tag:blogger.com,1999:blog-1818914211173551172024-03-21T19:54:10.677-07:00Ruby TylemmonsKerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-181891421117355117.post-29965393585129937662014-08-19T08:43:00.000-07:002014-08-19T08:43:32.004-07:00One Year Ago Today...We're just about coming up to that time. You know, that time when I'll CONSTANTLY be looking back at what we were doing "one year ago today." I can't help myself, and I'm sure that all of you parents who've been through traumatic events with your children do the same thing. OK so it's probably not limited to just those of us with sick children, but you have to admit we are probably looking back at the not-so-happy times more often than the rest of you ;)<br />
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So..."one year ago today" (or maybe "right around now" would be a better end to that phrase) Dan and I were getting ready to celebrate my birthday. We don't really do much usually just go out to eat and enjoy time with family. But last year I was hoping against hope that my birthday present would come in the form of a stinky little ball of joy, i.e. Ruby. Well, little miss didn't decide to grace us with her presence on that day but she did follow 5 days later on the pleasantly round date the 20th. Those of you that know me really well know I have a thing for numbers--specifically that they be round, or better yet divisible by 5, or better still divisible by 10. So wasn't it kind of Ruby to oblige my OCD? I think I'm getting off topic...actually where was I going...</div>
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Oh yes! I was talking about "one year ago today." Right, so what I wanted to write about was Ruby's birth...a rare pleasant memory, at least for me, of that category. I could go on and on about this because it was clearly a pretty big deal--birth of my child and all--but I'll try to stick to the actual nitty-gritty. Don't worry that doesn't include gore ;) Wow, I am really rambling, huh? FOCUS! Anyway...I went into labor on a Sunday morning. Thankfully I had very mild contractions throughout that day. I called the midwife, took a nap, walked over to a friend's house to watch a movie and eat some pizza. What movie did we watch you ask? Predator...that's right Predator. In the evening my contractions were finally becoming more regular but were still spaced far apart. Unfortunately they did become pronounced enough that I couldn't sleep but I encouraged Dan to do so because I figured that we were in for a long day tomorrow! And sleep he did...until around 3am when I woke him up to rub my back :)<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUm9Hgm2-BXIQwH0D9g1HYZZslUmPOVfTw8SaQFsgIR0L5P2TzRvUcULChsZzpc2MeuuS5VU5d7qF9h1QSjBGLvZzL45qrcBt7vkmh_RZsvsf0mICYtyROVuCPJtW2uxd_3grSY49WxH0o/s1600/100_3498.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUm9Hgm2-BXIQwH0D9g1HYZZslUmPOVfTw8SaQFsgIR0L5P2TzRvUcULChsZzpc2MeuuS5VU5d7qF9h1QSjBGLvZzL45qrcBt7vkmh_RZsvsf0mICYtyROVuCPJtW2uxd_3grSY49WxH0o/s400/100_3498.JPG" id="BLOGGER_PHOTO_ID_5493599365484578210" style="cursor: pointer; display: block; height: 400px; margin: 0px auto 10px; text-align: center; width: 300px;" /></a>View of my feet before Ruby vacated the premises</div>
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An hour or two later after timing my contractions we realized they were around 5 minutes apart so we made another call to the midwife and headed to the birth center. No hospitals for me, or so we thought. Now I had been going to a doctor as well as the midwife to make sure that everything was fine with the baby. I was OK with birthing in a hospital if there were any problems but none had been found and so all natural it was. BACK to the story...It was probably around 5 or 6am by the time Dan and I started driving and we stopped at a gas station to pick up some juice and donuts. I think I took 2 bites before I realized that was not happening. At the birth center things went pretty smoothly for a long time. I was having intense contractions but kept my focus and was handling them pretty well. Until I hit transition and 9 1/2 cm. I'm hoping I don't have to explain all of the birthing stuff but if anyone has questions there is this remarkable tool called "Google."<br />
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OK...Transition: HELL! But my husband--oh let me tell you about that man. He saved me time and time again. Now I can't attest to what he was truly feeling but when I was in doubt and in fear that I would not have the strength to carry on, I only had to look in his face to find strength. He looked at me as though he knew I could do this. His face beamed with pride and confidence and in him I found power. And not only did he provide me with this invaluable emotional support but physically he was present as well. Continually massaging me and holding me. Providing hours of counter-pressure to my back while we sat in the birthing tub. In a word he was...wonderful.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wcx7aN6SMcRbcRc5YedXQzG2qFTSDgPKsbAAgSFzvrF31iEj-FA10XfBRtR2DDIOJ6omB7IDnzNJStnLm7f5AJwVbEuz199g0g96K0YueA_2WnanYOnWyKPKnhskdKIJFX2ipBtd47rb/s1600/100_3496.JPG" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wcx7aN6SMcRbcRc5YedXQzG2qFTSDgPKsbAAgSFzvrF31iEj-FA10XfBRtR2DDIOJ6omB7IDnzNJStnLm7f5AJwVbEuz199g0g96K0YueA_2WnanYOnWyKPKnhskdKIJFX2ipBtd47rb/s400/100_3496.JPG" id="BLOGGER_PHOTO_ID_5493599359344334514" style="cursor: pointer; display: block; height: 400px; margin: 0px auto 10px; text-align: center; width: 300px;" /></a>Dan getting ready to catch :p</div>
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Another player in this little show was my sister. Her role during the birth was also invaluable. She would tag team with my mother who was also there. She also supplied the updates to the rest of the family in the waiting area. In addition to this she was a ROCK! She was calm and present 100% of the time. My mother (who I will get to later) was not so calm...albeit very present and absolutely necessary. But when I needed to feel as though everything was going to be fine, I had my sister to reassure me. She would run from task to task with a kind of assertive confidence that still impresses me to no end. I only hope I can help her in the way she helped me when little Croissant makes his entrance :)<br />
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Now, I must have been 9 1/2 cm for 5 hrs...at least it felt that long. I was pushing periodically throughout this time but no progression was being made. Well, except for my blood pressure which was climbing higher and higher. It was to the point that the midwives were on the phone with my doc asking if they needed to take me in. I insisted that I wasn't going anywhere and decided that as soon as I hit 10cm I was going to get that baby out! And I did :) It took lots and lots of pushing (so much that I broke some blood vessels) but come she did. After around 36hrs of labor she was born. My absolutely perfect baby girl--who throughout the entire pregnancy I was convinced was a boy--came into this world!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmn961k4Lyqdju5k4nYS4GioOXgtfBBvbHSWNwJDW4DSkwYGRIURMyXV2mLKXCRDfciL4MbpQ1XZKGcmmYN4ZzdqrBYEDUII2fTrWDfvnmNoaAjczipyMFArIZ0DrxbCZPjmqprlD83AjM/s1600/IMG_0193.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmn961k4Lyqdju5k4nYS4GioOXgtfBBvbHSWNwJDW4DSkwYGRIURMyXV2mLKXCRDfciL4MbpQ1XZKGcmmYN4ZzdqrBYEDUII2fTrWDfvnmNoaAjczipyMFArIZ0DrxbCZPjmqprlD83AjM/s400/IMG_0193.jpg" id="BLOGGER_PHOTO_ID_5493599365601223026" style="cursor: pointer; display: block; height: 360px; margin: 0px auto 10px; text-align: center; width: 240px;" /></a>First Moments</div>
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(Sorry for the quality it's pulled off of Dan's FB)</div>
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It was the greatest moment of my life. To feel her coming out of me, it was nothing short of miraculous. I kept crying tears of joy. In between sobs I would look into my mother's eyes and say, "I'm going to be a Mama!" Sometimes the phrase was repeated as a question but in that moment I've never felt closer to her. My mother looked into my eyes as my child was being born and I knew--I finally knew what that meant. That look she'd given me for so many years. And I was finally able to appreciate the love she had for me because I felt more complete than I ever had before. Immediately after Ruby made her entrance, in spite of the pain I turned to my mother who was holding me and I said, "I want to do this again!" I ignored her look of, "ARE YOU NUTS!?" and insisted that indeed I did!<br />
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So now Ruby was here, and at first things were very scary. She wasn't breathing, she was blue. I was terrified but Dan tried to keep me focused on him. Eventually my midwife had to give up on collecting cord blood to help her assistant with Ruby. Unfortunately we didn't collect enough blood to save, but clearly Ruby was the priority. After what seemed like ages Ruby started to breath and cry...but her cry wasn't right. It still isn't I guess. I've been told by my friends that she cries oddly--kind of muffled and quiet I guess--but at the time I just shrugged it off as wet lungs or something. I didn't really care. I was in heaven. My baby was here and she was alive.<br />
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We were awarded some very precious hours with her before the, pardon the expression, shit hit the fan. She breastfed, snuggled, and slept. Everyone slept actually, except for me who was still in a state of bliss as I lay in bed with my child. I will always remember those quiet moments as the last time before...how do I say it?...the last time my life was on the track I had anticipated. Before I became I mother to a child with exceptional needs. Before pulse-oxes and CHDs and 22qs and scars and pain and G/J tubes and pallet concerns and speech delays and low muscle tone and respiration rates and CHOW and on and on and on... For a long time I couldn't think back to those moments without breaking down. I hated looking at her birth pictures when she was in the hospital all those months because it reminded me of what I'd lost. Finally, I can look back with gratitude. I am so thankful for her birth and every detail of it because it was the one thing that actually went right...besides Ruby of course, who in spite of all of those things that I became so familiar with, or perhaps because of them, is still perfect :)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUwcfThSDmHnqG4Vqgv1XBr44jEyi1vPMr9nbOuVpOTD-lgAyv4yrVGWYEz-de20zS4mQphehlvbAGUQse00PnVhfI-wyujS37N-G6ZjMMd-XXljZsn4gA18Na9DKTM8QBIDOkoJY7OQlu/s1600/IMG_6023.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUwcfThSDmHnqG4Vqgv1XBr44jEyi1vPMr9nbOuVpOTD-lgAyv4yrVGWYEz-de20zS4mQphehlvbAGUQse00PnVhfI-wyujS37N-G6ZjMMd-XXljZsn4gA18Na9DKTM8QBIDOkoJY7OQlu/s400/IMG_6023.jpg" id="BLOGGER_PHOTO_ID_5493602516927345634" style="cursor: pointer; display: block; height: 360px; margin: 0px auto 10px; text-align: center; width: 270px;" /></a>This is what Perfection looks like...in case you were wondering</div>
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Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com2tag:blogger.com,1999:blog-181891421117355117.post-87290877009825224362013-11-08T19:27:00.001-08:002013-11-08T19:32:07.848-08:00Just an UpdateThis is a directionless post...consider yourself <span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">informed. Life is still wonderful. Even when upset occurs, this is still such a very good life I'm living. I feel so lucky, and I think Ruby does too. Nearly everyday she announces, "This is a beautiful day! Isn't that right, Mama?" Rain, cold, wind, fog...nothing can disturb her view of the world. Isn't that delightful? I'm so grateful to live in peace with my daughter. So proud that her world is simple and beautiful, that even when things stink we find a way to see through it and be happy. </span><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></span></div><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); ">Ruby is just a peach these days. Being four completely agrees with her...and me. She is still entirely contrary at times. Still fierce and stubborn. This is good thing, it is who she is and so could never be bad. She challenges me to be a better parent; a better person. Having a child, and being present with them every moment of the day, forces you to examine yourself. It forces you to empathize in ways you'd never needed to before. It demands every bit of your skill, your love, your diplomacy, your kindness, and your patience. </span></div><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); "><br></span></div><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);">So yes, Ruby is still brimming with sass...but she is also so kind. So loving. So concerned with others and remorseful when she feels she's hurt someone. Most delightfully she also seems to have realized that adults can be boring. For weeks now she's been actively seeking out peer interaction. She ADORES her cousins. To outsiders who are unfamiliar with Ruby and her plethora of anxieties it might appear as though she is overly sensitive when she is with them, or with any other children for that matter. And perhaps she is, but she has come so far. She begs to see Ronie and Kai, constantly...like every hour of every day constantly. Luckily they are only a flight of stairs away. And not only this but her fear of being touched by them has vastly diminished. She still wants control of the situation, but is willing to let go more and more. She trusts them more, and recuperates from upsets much quicker than before. She chases them around our basement, and even snuggles with them in bed. She willingly kisses and hugs them!! To the parent of an average child this probably seems standard, but to our family...it is nothing short of miraculous. I nearly cry every time she reaches out for Ronan, or when she doesn't recoil at Kai's touch. Basically this is all a very very BIG deal ;)</span></div><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);"><br></span></div><div><span class="Apple-style-span" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.292969); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469);">I guess that's all for now. Sorry for my abruptness, but I'm tired and happy and ready for bed. So off I go. Good night friends.</span></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO2wgXjQc0ZFS5uk1wy6zqb3P3zsUF4QF2azJaz9pMgCvCVezWU4WhlHwbFFIkPSf_qaYdorKyWVXtGZNF3T1ovrbVO4zVSTIgTzu81H-NueXlc1L8uex1iCEdiJOincoaJ6EjgX7mlyol/s640/blogger-image--741412590.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO2wgXjQc0ZFS5uk1wy6zqb3P3zsUF4QF2azJaz9pMgCvCVezWU4WhlHwbFFIkPSf_qaYdorKyWVXtGZNF3T1ovrbVO4zVSTIgTzu81H-NueXlc1L8uex1iCEdiJOincoaJ6EjgX7mlyol/s640/blogger-image--741412590.jpg"></a></div><div class="separator" style="clear: both;">Funny Bunnies</div><div class="separator" style="clear: both;"><br></div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOg6aI29HGKkVZy_Oic-ArYLdpy26tCZDJLn0cklx2vxhJ4jGIvU0y_qXUI6ZZOpNNNtkTGZx4aoXUhVAymh6yLUk8JAS5u6lprdun0UKmzFPMWAt5lDViP1qIp9oCST3AT38YonKrQEck/s640/blogger-image-675468832.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOg6aI29HGKkVZy_Oic-ArYLdpy26tCZDJLn0cklx2vxhJ4jGIvU0y_qXUI6ZZOpNNNtkTGZx4aoXUhVAymh6yLUk8JAS5u6lprdun0UKmzFPMWAt5lDViP1qIp9oCST3AT38YonKrQEck/s640/blogger-image-675468832.jpg"></a></div><div class="separator" style="clear: both;">Ruby with her string cheese :)</div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-910161956728408102013-09-17T22:31:00.001-07:002013-09-17T22:34:36.674-07:00Life is GoodThe past four years have felt like a raging river. I've been grasping on, struggling to keep upright in a tight raft not meant to traverse tumbling waters. Up and down, over boulders and falls large enough to capsize my vessel. And now I've come to this eery calm. The stream has somehow flowed into a glass lake just when I felt myself slipping beneath the surface. The water began to consume me and then...nothing. Serenity and peace. The quiet I had always sought became attainable. And here I am.<div><br></div><div>Life is so good right now it scares me. During the past four years I've faced what could only be described as a bizarre amount of challenges. First I was gifted a child whose needs surpassed what I felt I could give. Not only her development but very existence seemed all too tenuous. And then my marriage...now thankfully gone...fell victim to a series of problems which shall remain unnamed. In the wake of these troubles I find a foreign state of being. What I can only assume is happiness.</div><div><br></div><div>Ruby is four years old. She is so smart it kills me. She is brave and strong. She is passionate and loving. She thrives in school. She is healthy for now. She is miraculous. And I have become such a good mother. I don't say that to sound vain but when you find the thing you were put on this earth to do you know it. And I know it. I may not know much else but I KNOW I was meant to mother to my child. And frankly I rock at it. Maybe not 100% of the time but I'd venture only slightly less. I am a good mom. This is not the life I would have designed for my daughter but it is oddly enough the best one she could have. What's that phrase? It's only through the darkness that you can see the stars? For my little family, how true.</div><div><br></div><div>And so what else can I really say? For a brief moment on this journey the water is placid. Its smooth surface a much appreciated reprieve. The rapids may come again, most certainly will come again, but for now all is well. And so I will relish in the peace. Secure my vessel for whatever comes ahead and for this small moment enjoy the beauty that surrounds me.</div><br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgos_wY2bGE_PBcme67XsHMJ-81LOUamJRzs5B0iyIHCWXz76f-BMJrBoE23wAzR-RlrKMv_esLP6KvwLm_2l6_8NOjsASUACCDb7SJOuSBPv_3Mbu66SzsPiepwbSLLfmXlLZiBJoAQYgX/s640/blogger-image--768083731.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgos_wY2bGE_PBcme67XsHMJ-81LOUamJRzs5B0iyIHCWXz76f-BMJrBoE23wAzR-RlrKMv_esLP6KvwLm_2l6_8NOjsASUACCDb7SJOuSBPv_3Mbu66SzsPiepwbSLLfmXlLZiBJoAQYgX/s640/blogger-image--768083731.jpg"></a></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-74093226056257161942013-06-27T19:40:00.001-07:002013-06-28T07:07:33.879-07:00ThanksThere are people in this world who we catch on. Snag an arm, a leg, a vail of fabric, as we wisp past in our trenches. And sometimes they stick. This is for all of the people who have stuck in my life.<div><br></div><div>My strength of character is not an innate essence. My strength is pulled from you all. Sucked up through the web of vessels that connect us. Drawn from you and passing to you. This is why I can do anything. Survive anything. And thrive through it all. I am able to breathe because I have your arms to collapse in at the end of the day. I am sappy and overjoyed and powerful because of you.</div><div><br></div><div>It is you who have given my daughter the best version of me. I have waded in some things that seem so incredibly heavy, so darkly solitary that it would have been the easiest gift to float away in the hot tar of black and never return to myself. But I could not. You wouldn't let me. Deeply you scraped into the pit and ripped me into the world of living. Forcing me to move and think and feel. Throughout it I have been safe and protected. Shielded from judgment and cruelty by the armor you have forged. Safe and wanted, and so incredibly fulfilled. </div><div><br></div><div>And so, to my personal army, I love you. I thank you from whatever piece in me speaks most truth. You are valuable and honored forever in my heart. Much love.</div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-72205840579463369422013-06-01T21:00:00.001-07:002013-06-01T22:34:57.145-07:00Ruby TubiePlease bear with me for the next entry...I have a ton to say and I doubt in my excitable state it will be very coherent. Expect lots of these "..." and maybe some of these "--". Superfluous punctuation seems to occur more often when I am passionate. On to the post...<br />
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Don't ask me how, but I discovered this video on YouTube tonight. <br />
http://www.youtube.com/watch?v=NelpARXhoZY&feature=youtube_gdata_player<br />
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Ok, it 'might' have been discovered after surfing the internet for a good 3 hours while Ruby is with her dad tonight...or ya know something else that makes me seem less pathetic. It's from a British reality program I think. Anyway, *TUBE FEEDING PARENT ALERT* if your child has a tubie WATCH IT! Trust me you will find it fascinating...or infuriating...either way it's worth seeing. It's 45 minutes long so I know friends of mine minus tubie children won't have time to watch it so I will summarize:<br />
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A young girl (7 or 8 years old I think) is exclusively fed with a G/J tube, a tube you probably don't recall that Ruby used until she was over a year old. It goes directly into the intestine and requires a feeding pump (no gravity bolus) because the intestine can't expand like a stomach. Anywho...this girl has esophageal atresia I believe, and although anatomically is able to swallow/ingest food after numerous surgeries, has an obvious and crazy severe oral aversion and eats nothing. And I do mean nothing. No liquid. No solid foods. Absolutely nothing. Clearly her mom is awesome and devoted and loving. The girl seems happy and oblivious to the fact that she is missing out on anything. But mom is worried that her baby will never lead a normal life; never know the awesomeness that comes from pigging out on pizza or ice cream, etc. <br />
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Trying to keep this short we'll skip to mom finding a clinic in Austria that specializes in getting tubie kiddos to conquer oral aversions and eat eat eat. They succeed. Apparently 100% of the time. Mom is clearly relieved to have any possible way of getting her kidlet to eat and after getting an acceptance letter they fly to the clinic to begin the 3 week "treatment."<br />
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Now at this point you might be thinking, "Yay! Happiness and joy! Kid will learn to eat! Normal normal normal, yay!" But oh no! This is a starvation clinic! Yay?! Absolutely not "yay". Instead its all, creepy gaunt children and psychological stress. Belittling the mom-child bond. Suffering and manipulation. Eww eww eww!!!!!<br />
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Were you to observe me watching this show of a happy healthy special needs grade schooler morphing into an exhausted, starved, and traumatized ghost, you just might have witnessed me throwing up my hands and shouting in disgust at the doctors...maybe even flipping them off while wearing a really menacing scowl. I'm probably exaggerating what I saw due to my own very personal feelings on this matter, but it was crappy. I felt awful for the mama who clearly loved the stuffing out of her baby, and super awful for the kiddo undergoing the treatment.<br />
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Ok...so that sort of summarizes it...oh I forgot! Duh, you probably want the conclusion! The little lady did end up learning how to drink over the 3 week program, and is starting to taste solid foods as well. Obviously this is wonderful progress, and I'm not going to sit here and try to dispute that. Nor will I try to say the program didn't work, because it did. It got her to eat...but my God at what cost!?<br />
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So here's where I want to get into the meat of this post...that's right all that was merely context...sorry! Here's my 2 cents on the whole weening kids off of the tubie dilemma. And I will only speak to my experiences with Ruby because that's all I have to go on. If you've had totally different experiences and are reading this and thinking, "What is h*** is this lady talking about?" Well then I apologize, but we are all pretty trapped in our own brains so there you have it.<br />
<br />
Right...me and Rubes. Every 3-6 months Ruby, me Ma, and I go to Ruby's truly amazing GI doc to "check on her progress." I really do love her doctor...we went through a passel of GI docs to find him and he is the best there is. Still...he's a doctor...and doctors are always "the ends justify the means" kind of people. They have to be. I get that. They see a problem, they want to fix it. Mamas, on the other hand (and in Ruby's case Grannys, Aunties, and Granddads) are constantly doing this balancing act of making sure their kiddo is happy and healthy. Note the word 'happy.' Happiness is a HUGE factor for us. <br />
<br />
Here is a rough list of my priority concerns regarding Ruby:<br />
1) How can I keep her alive with minimal discomfort and pain<br />
2) How can I keep her psychologically happy and stable<br />
3) How can I help her to become a good person<br />
4) How can I help her to develop social relationships<br />
5) How can I help her to grow and learn to the best of her abilities<br />
<br />
See!? The fact that she is on a feeding tube does not fit into ANY of those concerns! I honestly don't care that much that she has a G-Tube. I KNOW she doesn't care. Sure it'd be great if she didn't need it...one less hassle I guess. And I'm not trying to imply that Ruby's situation is identical to the girl's in the video, because it isn't...I don't know her whole story. And it's true that Ruby, in many ways, has a far less severe oral aversion at this point than the young lady did at the start of the show. Ruby is eating a great deal of food these days, she will barely touch liquids, but I see progress continually. She is getting the majority of her calories from the food she eats, which is a true miracle in many ways.<br />
<br />
But seriously!? To starve a child and try and severe the mama-child bond or whatever...excuse me but that's total bullshit. All this isn't to say that Ruby and I don't work damn hard to overcome her oral aversion everyday. We spend a MINIMUM of 5 hours a day working on feeding...to be honest it is ridiculously time consuming and on both our parts sometimes incredibly frustrating. But we do it...I make sure we devote time to feeding therapy because of course it would be lovely if she was completely self-sustained, but that's as far as I'm willing to take it. Her mental health and her trust in me is paramount, and I would never be ok with her suffering just to get a tiny piece of plastic removed.<br />
<br />
I think the reason this all hits so close to home, is that in the last year or so I've had increasing pressure from the GI team to enlist Ruby in the hospital's feeding team program. From other parents stories it seems like a toned down version of this Austrian program. It seems as though force feeding may also occur. And frankly I'm sick of hearing about it. Ruby is a person that has intense control issues. She feels threatened when people tickle her without permission, or when someone touches her arm without her being prepped. And she has overcome so many of these aversions due to patience, kindness, and support. I am not about to throw her to the wolves simply to get some 'results.' <br />
<br />
I say screw those results. I'll take a happy, and still perfectly healthy, child who trusts me explicitly over one who is tube-free any day of the week. In this case, the ends don't justify the means...sorry docs but this mama tiger is going with her gut over your expertise. <br />
<br />
Seriously...does this look like a child whose life is lacking in any way? I think not!<br />
<br />
<br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFP0BxQCVa_5Igz8nH7vv1onfY7yBx6RmycEo94xjtRl3Ed18RRhZGXzlDOdWhFrr3tLJo2NUJIW_CWTiSRyHzbI4XINR1LvvPDpRJvaN_hsZ1yHx8yUHgsnL3rf0GcFTBZ-HjknUZuL1q/s640/blogger-image--532825819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFP0BxQCVa_5Igz8nH7vv1onfY7yBx6RmycEo94xjtRl3Ed18RRhZGXzlDOdWhFrr3tLJo2NUJIW_CWTiSRyHzbI4XINR1LvvPDpRJvaN_hsZ1yHx8yUHgsnL3rf0GcFTBZ-HjknUZuL1q/s640/blogger-image--532825819.jpg" /></a></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-36579262008818774722013-04-20T14:28:00.001-07:002013-04-20T16:16:49.788-07:00The TalkAs nearly all of you know, Ruby has a over abundance of terms to describe her medical conditions. Velo-Cardio-Facial-Syndrome or VCFS, 22q11.2 Deletion Syndrome, and occasionally (however inaccurately) DiGeorge Syndrome are used to describe her genetic condition. In addition to this Ruby's heart defect can be described through a myriad of labels that mean very little outside of the CHD community. Tetrology of Fallot (ToF), Pulmonary Atresia, major aortopulmonary collateral arteries (MAPCAs), and a Ventricular Septal Defect (VSD) are the specific medical defects of her heart.<br />
<br />
So...rewind a little over 3 years. These terms were all defining. I mean, they weren't in the sense that Ruby was, and is, my beautifully unique baby above all else, but still...they were all I had to go on as far as what to expect. So I treasured them. I became obsessed with them, like most parents of children with exceptional needs do in the beginning. I couldn't foresee the kind of child Ruby would become so I depended on these terms to give me the insight I so desperately needed. I would prattle them off to anyone who looked sideways at my child. Mostly because I was so proud of all she was in spite of these labels. They were so present in my mind. Always sitting forefront, ready to spring into action whenever I needed them. I was adamant about their proper usage and felt it my duty to spread awareness to every stranger I met.<br />
<br />
But as time passed they became less important. I began to barely think of these terms in regards to Ruby. At medical appointments I occasionally struggled to recall some of the specifics, not necessarily about these phrases, but about her g-tube size, the date of her last surgery, the name of her old feeding pump, etc. I simply didn't recall the details. Ruby grew and became so much more than these labels. She became so many wonderful and crazy and normal things that my poor brain just didn't have room for all of these obsolete medical facts when it thought of her. She was just Ruby and all of the terms didn't seem to matter that much anymore.<br />
<br />
Whether that lapse of attention to her terminology was good or bad I have no clue...it's just what happened. But now...now she is much older. With her age comes her big growing brain and all of its questions. Perhaps not exactly questions, but certainly a more sophisticated ability to understand who she is and what makes her unique. Now I have never been a person to shy away from open and honest explanations of all things biological with children. For example, Ruby knows where babies come from (at least an age appropriate version). She knows what makes males different from females, and so on. In fact she loves all things scientific and anatomy is no exception. We have books on the body and so forth and she thinks it's just awesome. She loves to explain to me how her food goes, "In my mouth, I chew it. It goes down my phosegus [esophagus that is] and to my belly!" So she is certainly able to grasp basic concepts.<br />
<br />
Anyway, this means that I feel the need to explain, and very often over-explain, her heart condition to her. Sometimes these discussions are prompted by her noticing her scars, or her g-tube. And for whatever reason I've found that bit of the medical mumbo-jumbo easy enough to explain to her, even with my momentary lapse of attention to her plethora of labels. Obviously I don't get into the specifics of what MAPCAs are and whatnot, but she kind of gets it. And I suppose her heart condition has always been mentioned to her over the years, in spite of it not being a central issue, because she does see a cardiologist. Likewise she sees a GI doctor and her "tubie" gets plenty of attention so we've talked about why she has it. But...that whole VCFS discussion...I guess I kind of forgot about it.<br />
<br />
It's not really an issue in her life. It's not like she sees a VCFS doc, or even goes to genetics because I learned really quickly how useless those appointments are. And it's not like she has a scar from her "VCFS surgery." She doesn't get purple fingers from it, or tire easily from it. She doesn't get bolus feedings from it, or get it snagged on her shirts...so it's not exactly a tangible thing to a 3 year old. And I suppose because of those reasons, I hadn't really mentioned it to her. In fact, I probably would have gone another year or two before having a talk with her about it, merely because it hadn't occurred to me. <br />
<br />
That is until few weeks ago. Because around that time she found a pamphlet in an old diaper bag with VCFS printed on it with giant letters. Smart and nosy girl that she is, she shoved it in my face and asked me what it was. <br />
<br />
Without really looking at it I said, "Uh...a pamphlet."<br />
<br />
"What does it say?"<br />
<br />
I finally looked at what she was holding and replied, "Oh. It's about VCFS."<br />
<br />
"What's CVSS"<br />
<br />
And then it hit me that she had no idea what VCFS was! I had completely dropped the ball! I never got how parents whine about having "the talk" with their kids until then. Sex? No big deal. Reproductive organs? I got this. Even heart defects? Sure, bring it on. None of these topics were even an issue because she has known about them forever. We never had to have "the talk" and hopefully never will because I think it's best to gradually mention all this stuff in increasingly appropriate language as a child grows. But I had totally forgot about the fact that I probably should have mentioned to my child that she has a genetic condition. I can't believe it never occurred to me!<br />
<br />
So I basically fumbled the whole conversation since I was taken by surprise. I'm pretty sure she can't understand what chromosomes are, but in my state I sure blathered on about them.<br />
<br />
"Uh, well you see, we all have chromosomes...uh...and we have a whole bunch of them...in fact we have pairs of them...you get one set from me and one set from your dad...uh...and they help to determine certain things about us...like...what color our hair is...and..." <br />
<br />
As you can probably guess she stared at me with a vacant expression. She then flapped the brochure around in the air and said, "look it's like a bird!" <br />
<br />
But of course I felt crappy for never having mentioned the phrase VCFS to her before, so I pushed on in a slightly more coherent manner.<br />
<br />
Eventually I simplified things for her. I said something like, "You have VCFS. It's why you have a heart condition, and why you see so many doctors. It might be why you sometimes have a hard time around other kids. It might mean you learn differently from other people. There are tons of other people who have it, some people have it and they don't even know. Even I could have it."<br />
<br />
Worried that I'd been too negative, which I certainly didn't mean to be, I amended, "It's not a bad thing. It just means you are that much smarter and stronger than everyone else because you are so amazing even with a tiny piece of your DNA out of the picture!"<br />
<br />
She listened as well as any pre-schooler might, said, "Ok," and went back to making the pamphlet fly like a bird. But she must have processed some of what I said because when she found the brochure again the other day she declared proudly, "I have CVSS!" <br />
<br />
So, did I totally suck at this!? I mean, I'm sure it's not that big of a deal because she is only 3, but I feel like I could've handled this better. Maybe I should be happy I fumbled with this now, so that I can have a better idea of how to broach the topic with her as she grows. I just feel like there is a lot riding on how she views herself, based on how I frame VCFS to her. Am I crazy? Is it not that big of a deal? I really don't know... I would hate to think that she thinks any less of herself because I screwed up a conversation about biology. I mean, VCFS isn't "bad." I guess the issue I'm struggling with is how to define it. Do I describe it as a disease? Because it's not. And that makes it seem so "bad." I want to explain to her that in some ways it's no different from a person who is genetically predisposed to diabetes, or having long toes, or sinus infections, or for having a giant genius brain that can do complex mathematics in 0.2 seconds. It is a part of who she is, and because of that could never be "bad." I just hope I will be able to help her see that someday. That she will view VCFS as a component of who she is, without being defined by it.<br />
<br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjczOIXcwyEEbG6T6oAozTJT8U4vWTdrrs662tmDSPMLj9SuccVDFe0BfOHlSEXrBSjV_N_XOsodxGs0-FaDFMFSmIfMFFLaAxKRQB_O-vDYQT67y4lc5SjO28QCSYsQSNGGPxfMikFBRC-/s640/blogger-image-1124582531.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjczOIXcwyEEbG6T6oAozTJT8U4vWTdrrs662tmDSPMLj9SuccVDFe0BfOHlSEXrBSjV_N_XOsodxGs0-FaDFMFSmIfMFFLaAxKRQB_O-vDYQT67y4lc5SjO28QCSYsQSNGGPxfMikFBRC-/s640/blogger-image-1124582531.jpg" /></a></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-71071386465769688452013-04-14T19:39:00.001-07:002013-04-14T20:08:27.941-07:00ChangeChildren change everything and nothing. In many ways I am the same person I was 5 years ago. My neuroses has sadly not left my side, nor my occasional lapses of self-doubt. I still adore Mexican food and watching old movies. I am still surrounded by the same circle of close friends. Life continues to forge a path that rises and falls. Minutes turn to hours, hours into days, days into months. I have the same feelings. I value the same things.<br />
<br />
And yet...I am reborn. Having a child forced me to examine things in my life that I had merely glanced over with a blind eye. My life was not good before. I was a broken person and completely unwilling to recognize that. <br />
<br />
Ruby didn't 'heal' me. But being responsible for her did. I could no longer live in the environment I had, at the very least, allowed to take root. Perhaps I didn't plant the seed, but I never weeded the damn garden. That probably doesn't make sense... Sorry about that, all you get are bad metaphors. My point is that I had been a passive spectator in my cluster**** of a life until Ruby came along. Once I had her I ceased to care about the false sense of security I had convinced myself to accept. That meant nothing. My own comfort, the comfort of people I had been wrongly protecting for far too long...it was all pointless. The only thing that mattered was, and is, Ruby. This perfect little being's life was in my hands, and I could no longer rationalize away the dysfunction in my life. Because it was up to me to create a home and a family that was worthy of her, and if doing that meant rocking my fragile universe, then that's exactly what I was going to do.<br />
<br />
And so, I did it. I changed my life. I am a better person for it. And most certainly a healthier person for it. It has been hard, it will still be hard. But she has gotten what she deserves. She has a loving and stable home, and you know what? So do I. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBBSFBmghFGBjj2q18E9NLBDUcAKvnc9KjYMJf5WeYD_fwS4dzLpCZzgS1xTILRIoa-TL3j3sY-tZw6yfqpvoGrgkBkJAGoC1EUw9AYd5pTXPQQx8BtopPZqSeA5w3Qcjhv214LHf_31nI/s640/blogger-image--1200218001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBBSFBmghFGBjj2q18E9NLBDUcAKvnc9KjYMJf5WeYD_fwS4dzLpCZzgS1xTILRIoa-TL3j3sY-tZw6yfqpvoGrgkBkJAGoC1EUw9AYd5pTXPQQx8BtopPZqSeA5w3Qcjhv214LHf_31nI/s640/blogger-image--1200218001.jpg" /></a></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-843828692443619962013-02-23T18:51:00.001-08:002013-04-14T20:07:53.652-07:00GuiltGuilt. All encompassing guilt. When it runs unchecked it overrides all of the senses. It often renders me immobile. Frozen under its oppressive weight. As a woman, and specifically as a mother, it is constant. I hope by making this generalization I don't offend. It has merely been my observation that guilt is ever-present in the lives of the women that I know. Whereas men seem more content to accept what is and not worry about what they could have done to alter their reality...women seem plagued by their choices. Perhaps because women feel responsible for Every. Little. Thing. I know I do...even when that is completely irrational. I feel as though I should be able to provide stability/happiness/compassion to everyone at all times. And frankly...it is exhausting.<br />
<br />
I should have done the laundry today, why didn't I just do it? Now Ruby will be living in squalor. I yelled at her yesterday when she was screaming in my face. Why did I do that? Now she will be scarred for life. She cried on Thursday on her way to class. I couldn't do anything to help her. Her confidence will dwindle and she will feel helpless and alone. I must be a horrible mother. I couldn't get her to eat enough this morning...and we didn't eat at the table. "Real" families eat at the table, right? Why am I failing her at every turn? Why have I made the choices I have? Will she resent me? Will she need a therapist to sort out the issues her parents have burdened her with? When she faces her next surgery will I be the mother and the advocate she needs?<br />
<br />
See?! I'm already feeling guilty for what I might or might not do in the future! Crazy! Oh how the mind works, eh? I once told my friend that everything we are responsible for causes us to feel guilt. She laughed and agreed. <br />
<br />
Before I became a mother, I was a worry-er. I would over-analyze and fret over the smallest of things. Thinking I had not done enough to help, or afraid I had not studied hard enough for a test. I frequently felt that my best was never enough, and guilt ensued. AFTER I became a mother those feelings grew like weeds. Strangling out the semblance of a garden that was my mind. Now, there are days when every other thought is centered around what I perceive as my failings. <br />
<br />
When you have a child, your emotions are suddenly not your own. It is a startling effect, to feel so connected to another human being that when they hurt you feel it too...actual empathy. Real and true. When Ruby cries I feel torn inside. I feel a pull to comfort her that can not be expressed fully with words. When she is upset, or frightened I feel it with her, through her. Those early days in the hospital were particularly harrowing. After being stabbed with needles for an entire afternoon she would flinch at a gentle touch. I felt like I was pierced as well, my skin broken as hers <br />
<br />
So...when you feel that much for someone, and when you are responsible for their life. Their health, their happiness, their education, their diet, their social abilities, their everything...that leaves a wide net for you to maintain. Every time you fail a hole in that net tears. And while you try to repair the damage you've done there...another 5 holes appear. Some of these rips are your own doing, and some are caused by snags in the sea but either way, some days it feels like all you are doing is patching holes. Being responsible for life is amazing, and rewarding, and joyful, and triumphant, but as I said before...it is also damned exhausting.<br />
<br />
So deep void...what to do about this guilt? How can a person overcome it? How can I know I've really done the best I could have done for my child? Hello void? Any answers? Cause I'm fresh out of ideas...Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-85231002201305652112012-08-10T21:14:00.001-07:002013-01-03T22:58:39.453-08:00My HeroI finally feel ready to write again. This blog is pretty much exclusive to family and friends. It would have been so much easier to write this past year if I knew those closest to me wouldn't be reading it. Anonymity goes a long way some times, ya know? But since that isn't the case with this site I held off. Biding my time until I felt able to share my thoughts and feelings about raising Ruby without unwittingly letting go of certain details that should not be expressed to the masses. Undoubtedly I will be walking this line with a slight waver in my step, but I do feel more practiced in my ability to balance as of late so...here goes!<br />
<br />
Ruby is...well for starters Ruby is three!! Can you believe it!? I know I barely can. She is becoming the most ridiculously bossy little fiend. And she is so funny! I have never known another pre-schooler with such intentional comedic timing. The kid is a riot and she knows it. She loves toy cars, rocks and fossils, cars, reading books with me, cars, Finding Nemo, and oh yes...cars! Seriously, the kid may be an addict. In truth though I can't believe how absolutely deliriously happy she makes me everyday...even on the really crappy days. Even those days where I can barely function, and can't seem to escape the curious gravitational pull my couch has. Even on those days when she's acting particularly fiendish, and can't seem to stop screaming or whining. Maybe that seems paradoxical, just like every other facet of parenting, but it certainly is true. <br />
<br />
This year has brought on intense challenges for Ruby. Very profound changes have rocked her little world. Most of which, quite frankly, make my gut wrench. But she is still standing, still precocious, still very much loved. And then there are the smaller battles. The ones that passerby can't detect. She faces fear everyday and overcomes it. She is terrified of loud noise, of the unpredictability of other children, of being separated from me (even for brief periods of time), and of a variety of other worries that fall under the blanket of anxiety. Whether these issues are a result of her chromosome deletion, our family's seemingly genetic predisposition to anxiety problems, her painful experiences in the hospital, or simply her innate personality I couldn't tell you. What I do know is that she struggles everyday to function in a world perceived by her to be full of chaos. I've borne witness to her panic and frustration many times. <br />
<br />
But I have also seen her triumph. Oh how far she has come! This small person; so sensitive to movement and sound and touch...she now thinks nothing of striking up a conversation with a new adult as long as I'm within arms reach. She runs around my friends' houses as if she owns them. She embraces dogs ten times her size. She goes to the movies and doesn't cry at their volume. Heck, she goes to school...WILLINGLY...with a classroom full of CHILDREN and no Mama!! She is my hero. This little person who once found all of those things so paralyzing at one point now does them with only minor reserve. I think she must be the bravest person on the earth. Can you imagine living in a world filled with things that frighten and frustrate you? Where nearly everything seems a threat? Some days I think that's how Ruby must feel...but she is stronger than those fears. She is just so strong. Just think, all of those strangers, who've been lucky enough to have a chat with Ruby, have spoken to an actual hero...and they don't even know it! Not to mention Ruby's whole surviving-a-life-threatening-heart-condition shtick! She is amazing!<br />
<br />
So maybe that all sounds incredibly sappy and false. I'm not sure. Don't get me wrong, Rubes has her fair share of sass...okay she has three scoops of sass with a side of stubbornness, and extra opposition on top. Sometimes she couldn't share with her cousins if her life depended on it! And occasionally she is a complete wild child, who screams when we are out to eat or throws EVERYTHING practically EVERYWHERE in a comical act of defiance. But all of that? That's just being three. I can handle that...even when I feel like I can't. Because as you might have deduced, I have a hero for a daughter. <br />
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My Tough GirlKerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com2West Allis West Allis43.003411 -88.004937tag:blogger.com,1999:blog-181891421117355117.post-18339522037000881042011-11-18T20:56:00.001-08:002011-11-18T21:53:10.723-08:00Bad DayToday I had a bad day. Don't get me wrong I've had a lot worse, but today was hard. I'm a bit of an emotional wreck as of late and find myself acting like a crazy person at completely inopportune times. I don't really want to elaborate on this but trust me...today contained one of those moments. <br /><br />Perhaps it's because I'm sick, a sinus infection appears to have me in it's grips...yet again. And so my brain has been rather fuzzy. I can't seem to compartmentalize emotions as well as usual. Sadness sometimes spilling into my motherly duties when I least expect it. So frustrating to not be in control of one's faculties. But like I said, I am sick...so perhaps it's best to chalk it up to clogged sinuses.<br /><br />I'm not so sure how much of this is making sense--in no small amount due to the afore-mentioned fuzziness. I'm also typing this on my phone, which makes for impulsive and disjointed thoughts. Probably small paragraphs too...or not...so hard to tell on a phone.<br /><br />But I digress! Bad day...yes I have had a bad day. I feel quite horrible. The tv did a lot of babysitting I'm ashamed to say, because for much of the day I was planted on the couch contemplating just how much sinus pressure my frontal and temporal facial plates could actually take before fracturing (apparently something from h.s. anatomy has stuck). At least with each groan of pain I found myself promptly greeted with sloppy toddler kisses in a vain, albeit appreciated, attempt to kiss away the owies.<br /><br />In addition I am doomed to witness the entropy of my home as I sit suctioned to the couch cushion. The house seems to have turned from it's relatively clean state to a complete disaster...all because I haven't been on top of my game for...what? Two days? Yes...I guess two days is all it takes for a change of state to occur in domestic matter.<br /><br />But...tomorrow is a new day...or whatever cliche fits best. I have antibiotics, antihistamines, and nasal spray, and so armed I will face the dawn. Tonight I will cuddle my squirming child, who really should be sleeping and not swatting at my phone, and think about what delightful mischief we can get into tomorrow. As long as my poor sinuses grant us permission, of course...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXLWssPysbe4NccP2G16ZW_8u8xyO25t8zfYUNxLrqB6JM_lybVycK60uyuq1Jv5b1u4MrRsG6kMnIunc1cKx5tjai7SywbUTCUyxU1jejRmQibWZi-1uaCCMdj4YxxIfYddijKk6nR8eu/s640/blogger-image--55608416.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img style="width: 526px; height: 394px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXLWssPysbe4NccP2G16ZW_8u8xyO25t8zfYUNxLrqB6JM_lybVycK60uyuq1Jv5b1u4MrRsG6kMnIunc1cKx5tjai7SywbUTCUyxU1jejRmQibWZi-1uaCCMdj4YxxIfYddijKk6nR8eu/s640/blogger-image--55608416.jpg" border="0" /></a></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0West Allis West Allis43.019224 -88.004736tag:blogger.com,1999:blog-181891421117355117.post-81347526464616214402011-10-29T10:09:00.000-07:002011-10-29T11:13:56.749-07:00Saying Goodbye to the Green-Eyed MonsterJealousy. Oh how I HATE jealousy. It has been an emotion I have had to deal with since the day we found out Ruby was never going to have a "normal" life. I remember feeling jealous of my friends with healthy children; jealous of other families in the NICU with children who were "better off" than Ruby; jealous of my sister and her healthy baby, jealous of something I would never have...or more to the point, something Ruby would never have. It's one of the most deplorable emotions to live with. Mainly because I know it to be an irrational sensation. It accomplishes nothing. It only serves to distance me from the relationships I need. And it clouds my mind to the pain others around me feel. It encourages selfishness--forces me to become a person I do not like at all. <br /><br />One of my best friends was pregnant when I was. We went through it all together, and at that time I felt closer to her than I ever had before. And then the babies came. She had a beautiful healthy daughter and a month later I had Ruby and all Hell broke loose. For almost a year every time I saw her or her daughter I felt physical pain. A tightness in my chest. Anger, sadness, and so much jealousy. Every time after seeing them I would break down in tears. I hated feeling that way. I pushed her away because I simply couldn't stand the hatred I felt. And even now as I recall those emotions guilt unmistakably follows. I didn't want to feel that towards my friend, and especially not towards her sweet innocent baby...but I couldn't help it. Jealousy blinded me to her needs...and I became a pretty crappy friend because of it. All I could see was how easily things came for her daughter. Sitting up, walking, talking, Hell even eating was something Ruby couldn't do. I so desperately wanted those things for my daughter.<br /><br />With every family I met, every old friend who posted pictures of their happy healthy children on facebook, it seemed that everywhere I turned I was slapped in the face with jealousy. When I spoke with other special needs parents they told me they experienced similar things, but that in time it faded. When the tumult of the early days dimmed into the background and emotions were less raw they ceased to feel that way. They said that once they began to see their children grow and develop, at whatever pace they could, that the feelings of jealousy were replaced with pride. I didn't think I would ever get there. At the time I knew I was proud of Ruby. Proud of her every breath; proud of each smile and laugh. But I couldn't imagine not feeling jealous of the life we had been denied. The life my child <span style="font-style: italic;">should</span> have had. <br /><br />I can't say exactly when it started changing. A shift in how I looked at my friend's daughter. All of a sudden she wasn't an enemy. She was an amazing and delightful resource. My child's friend. My child's <span style="font-style: italic;">best</span> friend. (I'm crying now as I type.) All I see when I look at my friend's daughter is this amazingly bright and strong child who loves my daughter. Someone who accepts her differences with the ease that only a child can. I really can't even begin to describe how wonderful it is. <br /><br />Even as my jealousy faded for my friend and her daughter I still struggled with it for others. But slowly that too began to dull. Ruby started doing all of these amazing things. Crawling, walking, and even talking a little...not to mention the wonderful personality she began to develop. And all of a sudden I stopped comparing. Stopped noticing what Ruby wasn't doing and started seeing what she could do. At each milestone I found myself beaming with pride! It didn't matter that she walked at 18 months versus 12. And it won't matter that she'll start talking in full sentences at 3 or 4. Or that she'll start to eat more regularly when she's 4 or 5. It just doesn't matter to me anymore! I know she'll get there and I don't really care when. Everything she accomplishes is just icing on the cake. She's my child and I love every single thing about her. I don't love that she will have to go through more pain as she faces medical intervention throughout her life but I love the person she is...and she is that person in part because of her "special needs."<br /><br />It is so freeing to feel this way. The weight that has been lifted was so very heavy and I finally feel like I can enjoy everything Ruby has to offer. I feel pride whenever I see her struggle to do something other children already can. Because now where I once saw her suffering just to get by I see her determination and strength. And when I see other children who are clearly healthy or gifted I don't feel that pang of jealousy, I simply see children--and maybe potential playmates ;)<br /><br />There is some quote that always flies around the internet...something along the lines of, "Being a good parent means loving your child for the person they are meant to be, and not for the person you want them to be." And although I always loved Ruby I think I finally truly FEEL that...that total acceptance and pride in whoever she is. And now that the veil of jealousy has been lifted it seems so easy! After all...Ruby is such a flipping amazing person exactly as she is!Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com3tag:blogger.com,1999:blog-181891421117355117.post-75911194861980572242011-10-04T19:24:00.000-07:002011-10-04T19:55:49.090-07:00GratefulTime for another post on here. I haven't written one in a while...again...but I've just had a glass of wine and Ruby is sleeping so here goes!<br /><br />The other day I was hit by the door of realization that I would assume is quite familiar to parents of children who are "medically fragile." Ruby had just woken from a nap and was characteristically cranky and cuddle-y. As she snuggled against my chest I stroked her head and sang to her as usual. But unlike our average post-nap cuddle I began to cry. My mind drifted to thinking about how she would not be with me, just like this, in nearly any other time period. Were she born 100, 50, or even 20 years ago she would have died. Or in a best case scenario, have been sustained on high levels of oxygen and in a much more delicate state. I couldn't help but imagine all of the amazing doctors, children, researchers, nurses, scientists, parents, animals, and so forth who have created a world in which my daughter can not only survive but thrive. Truly thrive! The countless variables that have played a role in her ability to live are mind-boggling. And because of all of those steps. Because of all of those pieces of the puzzle I am beyond the luckiest person that lived to have my child cranky and sweet nuzzling her face into my chest.<br /><br />My life may be difficult at times. And Ruby's will undoubtedly be even more so...but all of that chemistry of universe will amount to something. Because she is here and with me. She laughs everyday. She smiles everyday. She reads with me everyday. She colors. She plays. She learns. She cries. She grows into an evermore admirable person everyday. All because of a hundred-thousand moments in time that led to her having a surgery that saved her life. And she gets to live it! I am simply in awe of this. And I will NEVER take it for granted.Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-74424108612224695002011-08-30T22:04:00.001-07:002011-08-30T22:44:21.433-07:00Chaos and HappinessI have always tried to use this blog as a vehicle to vent the obscenely abundant amount of stress I seem to have and that usually means a strict code of open honesty...but there are some things I simply can not part with. So, needless to say my life has been in upheaval lately. While things are still not completely settled I have been reassured that I have the best family and friends on the planet, who will undoubtedly be a support system for Ruby and me forever and ever, AMEN! Sorry to remain a bit clouded on my absence from blogging but that's the best I can do!
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<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDE0487xIT8Sz3VfuESVQOWBKyEhD8xyJNKci4l9qpFtF0RGdgzR4xArIBXdrnUsq6wFn-jtXWMn01Y6ROFXPuJC-Vso7NxdAzoxc-ZMF2Oos7p32ocAJCJiPGuPXGrBzcTWePwIcARRfu/s1600/287943_534841028468_133700170_30954174_6266286_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDE0487xIT8Sz3VfuESVQOWBKyEhD8xyJNKci4l9qpFtF0RGdgzR4xArIBXdrnUsq6wFn-jtXWMn01Y6ROFXPuJC-Vso7NxdAzoxc-ZMF2Oos7p32ocAJCJiPGuPXGrBzcTWePwIcARRfu/s400/287943_534841028468_133700170_30954174_6266286_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5646890750452602098" border="0" /></a>
<br />Ruby is...well Ruby is just flipping awesome! I can not even begin to explain how much I adore that little kid. She is turning into the most precocious, sassy, sensitive, affectionette, adorable, kind, silly, imaginitive, ball of love that has ever been! She is my salvation! Each day, as I struggle to move from my wickedly comfortable bed, we go on an adventure of some sort. Parks, bike rides, museums, lunch time, camping, even car rides to Target are a hoot with her. She is simply a delight. I would struggle to count how many complements she has recieved for being well-behaved and charming these last few weeks. Don't get me wrong she still has her moments ;) She is still not the biggest fan of Ronan, for example...although her terror for him seems to have given way to a kind of tolerant annoyance :/ But overall she really is doing magnificent!
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<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnJxZC7kNZ5ySQ2dB2UV3CJUkbgh-6S3fv67-aWz1fQyqwXUQSLNDghCTtbHXV4J5e238fyjl1bQdBqvCxY8CpNXWGPlY8Mqzyc2hUOTLnsSd1KYrEkNkSD20t6oO06_U_YGDv8g6eT5I/s1600/291079_534742451018_133700170_30952816_2844600_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAnJxZC7kNZ5ySQ2dB2UV3CJUkbgh-6S3fv67-aWz1fQyqwXUQSLNDghCTtbHXV4J5e238fyjl1bQdBqvCxY8CpNXWGPlY8Mqzyc2hUOTLnsSd1KYrEkNkSD20t6oO06_U_YGDv8g6eT5I/s400/291079_534742451018_133700170_30952816_2844600_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5646890749218825170" border="0" /></a>
<br />Other news:
<br />I've become addicted to buying used children's items on craigslist, resale shops, rummages, etc. Seriously. It's becoming ridiculous. Our tiny Stallis backyard looks like a cheap daycare.
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<br />My butterball of a nephew is turning one this weekend! I can't believe it! He has brought so much joy into everyone's life, even if Ruby can't acknowledge that yet ;) I love him so much.
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<br />Ruby and I went on a little mama-daughter camping trip a couple of weeks ago. It was wonderful. We played, relaxed, and just enjoyed every second of each other's company. We even met another "special needs" family and bonded instantly. I must say that although this is a "club" I never would have willingly joined, I love the immediate sense of knowing and comradery that comes with meeting other moms who are walking this same path. It's a lovely thing to feel connected with someone, even if that someone is a complete stranger.
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<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPOvur0hwlrSVhYXqw7-Efl0L6m_44iWJ8jVP-t-K648Bn14T1fFnmybZ1vUzMx6_dbI_G62ptlSGSx_yToAck2Kd6uyrJZnFW5qGHZTebZOYxk3DoJPuO8Q3B9g6yKxTN2vd79KrYIc4p/s1600/288806_534701762558_133700170_30952186_714267_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPOvur0hwlrSVhYXqw7-Efl0L6m_44iWJ8jVP-t-K648Bn14T1fFnmybZ1vUzMx6_dbI_G62ptlSGSx_yToAck2Kd6uyrJZnFW5qGHZTebZOYxk3DoJPuO8Q3B9g6yKxTN2vd79KrYIc4p/s400/288806_534701762558_133700170_30952186_714267_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5646890757535867266" border="0" /></a>
<br />We also have a very special wedding coming up in two weeks. My dear, dear friend is getting married and Ruby and I are both participants! She is a flower girl and I am a bridesmaid. If you know me at all you know I am NOT a romantic person, but that I LOVE me some wedding mush! I will undoubtedly be sobbing throughout the entire service. I am just so geeked!
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<br />I think that's all for now. Thanks for not forgetting us!
<br />Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-30951377880208862812011-07-27T22:08:00.000-07:002011-07-27T22:53:49.239-07:00Ruby-Ronan TroublesI haven't felt like writing much lately. But I'm going to try to push through this...<br /><br />Ruby has experiencing some intense anxiety lately. She has always had severe issues when she is in a medical environment (understandable), with loud or piercing noises, with strange textures, and with large groups of people in a confined space. We have been able to manage most of these episodes through avoidance and comfort but recently her anxiety has presented itself in a way I have simply not been able to quell. Ruby has become terrified of her almost-11-month old cousin Ronan. (I thought of writing this as a faux monster movie description, i.e. The Screecher, but am just too bummed about it all).<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcHq8cGUh3d3gjxSmLlIHFtycjDhzNOqWdzvndy6lTAl9Eyus0MIxiQyhUPCi5Aiw_Zedx32iWkujirkkG8geuNmdHnVXmA5kyYwXxjfTnmlxm6R9nVhlDsD1B47BCcGGjtWe4_2ZbvHzE/s1600/270898_532760662538_133700170_30916398_2817863_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcHq8cGUh3d3gjxSmLlIHFtycjDhzNOqWdzvndy6lTAl9Eyus0MIxiQyhUPCi5Aiw_Zedx32iWkujirkkG8geuNmdHnVXmA5kyYwXxjfTnmlxm6R9nVhlDsD1B47BCcGGjtWe4_2ZbvHzE/s400/270898_532760662538_133700170_30916398_2817863_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5634275183801927378" border="0" /></a>See that creepy baby glare...pure evil (according to Ruby). And I'm TOTALLY kidding in case you have no sense of humor.<br /><br /></div>More seriously, for many reasons this is just so sad. First and foremost she has always loved Ronan. She has loved petting him, feeding him, seeing him, and interacting with him on any level. Ronan clearly reciprocates this love, which for him means he often squeals with excitement when he sees Ruby. The squealing has Ruby so scared that once he utters a peep she refuses to sit on the floor with him or even look at him. I have been watching Ronan a few days a week so this has made things even more difficult. Nap time is impossible and my usual recourse, of taking the kiddos for a car ride to sleep, ceases to work because Ruby is especially frightened when in an enclosed and inescapable space with him.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglxkDWEcphEtyuldYyAvksPT0S3OXujhsFlafHZnnWVzMakp6YufFrNL4WcDt44wodIP3B8TB8hHWWS6PGvVlMoYhtASSDxpqJcm4Mm3XmsvbWRMP9045BXaHfgUile1gnPu4gqj7LtNGY/s1600/210291_527091812958_133700170_30866027_7587144_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglxkDWEcphEtyuldYyAvksPT0S3OXujhsFlafHZnnWVzMakp6YufFrNL4WcDt44wodIP3B8TB8hHWWS6PGvVlMoYhtASSDxpqJcm4Mm3XmsvbWRMP9045BXaHfgUile1gnPu4gqj7LtNGY/s400/210291_527091812958_133700170_30866027_7587144_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5634275160951932962" border="0" /></a><br />I am at a complete loss. I have tried ignoring her behavior and treating it like a tantrum, but this seems to only enhance her panic and her fervor escalates quickly. I have tried pushing through it with distraction and assurances but this only works temporarily, until he squeals once more and sends Ruby over the edge of reason. I have talked with other parents and tried a few different remedies from their arsenals. I have tried exposing her to images of Ronan and she merely smiles at his pictures and videos and goes right back to screaming in his presence. I have talked with her OT about the problem, and operating under the assumption that this is a sensory issue, we have tried to resume brush therapy. I haven't watched Ronan for a week or two but tomorrow I am so that will be the big test, but I fear the worst.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbxgiqN6j8T20MzoJM4VqfjBiYhgARuIE-lrzBDjhGcQKFIEFJTedFJb4RCxi9vSBlQPd_eI4WzGIINWYQbjLpJqPv-Q9crXbJCySpyrWht2pg0iQP-43niF4C3Aary8AEQsF5Y6tanRpL/s1600/227121_527697933288_133700170_30874976_235371_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbxgiqN6j8T20MzoJM4VqfjBiYhgARuIE-lrzBDjhGcQKFIEFJTedFJb4RCxi9vSBlQPd_eI4WzGIINWYQbjLpJqPv-Q9crXbJCySpyrWht2pg0iQP-43niF4C3Aary8AEQsF5Y6tanRpL/s400/227121_527697933288_133700170_30874976_235371_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5634275169257208946" border="0" /></a><br />Ruby's doctor recommended she see a child psychologist, and while I generally think therapy would help a child with such a problem, I worry that adding new medical personnel to Ruby's ever growing list might only do more harm than good. (Not to mention that Ruby is still mostly non-verbal and our insurance would most likely refuse to pay for treatment). I am beginning to really worry that this is a more severe problem and not merely a phase. And while I know Ronan WILL grow out of his screaming, what if Ruby does not grow out of this intense fear? What if she can not handle interaction with her peers in a normal fashion? How will she ever attend preschool if she can't deal with the noise and unpredictability that is other children?<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieL6Bbxf7GWuTW7ZlTUo-uct1E4aHnnRCTocweXKj6Mh5USGvldbgpleAW4mA1MFgLiQs7rv_7h_lGDwdLU5wsFYfeTzH5CSkTAFWZSFD0S3wn3L6wIATSEsMVzazp7XwgbwRnQ42OgB1T/s1600/255953_528935423348_133700170_30891976_3504395_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieL6Bbxf7GWuTW7ZlTUo-uct1E4aHnnRCTocweXKj6Mh5USGvldbgpleAW4mA1MFgLiQs7rv_7h_lGDwdLU5wsFYfeTzH5CSkTAFWZSFD0S3wn3L6wIATSEsMVzazp7XwgbwRnQ42OgB1T/s400/255953_528935423348_133700170_30891976_3504395_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5634275175238557058" border="0" /></a><br />I miss my sister. I miss Ronan. I haven't really been able to see them much since Ruby has had this reaction to him. I just want this to be over so that we can go back to enjoying each other. I miss our movie nights, dinners, and trips to the domes. I don't know what to do. And I'm so sad about that.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdjUIXrMiZZB8qpQus17owXRs67DAFtvFeGtS3c6xuUVjtPvmM8_89BinEG-l6RPZIdLNUVdM5ThQOVwz4-VVeqpe4fe5VrY00DDwCOk8-INkoqggvYXLpJpWj9foBgl9N3xSaampn_1K7/s1600/270832_532443513108_133700170_30911320_2461205_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 298px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdjUIXrMiZZB8qpQus17owXRs67DAFtvFeGtS3c6xuUVjtPvmM8_89BinEG-l6RPZIdLNUVdM5ThQOVwz4-VVeqpe4fe5VrY00DDwCOk8-INkoqggvYXLpJpWj9foBgl9N3xSaampn_1K7/s400/270832_532443513108_133700170_30911320_2461205_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5634275179164497234" border="0" /></a><br />There are so many crummy things that have happened lately and I just want life to get a little bit easier...just a little bit. I know I shouldn't complain because there are so many families out there who have lost their children, and they would give anything to have their baby here in this life to worry about, just like I am. But I am really tired. I wish Mary Etta were still here--what was it her dad used to say about wishes? I wish Dan wasn't so God-damned depressed. I wish I didn't feel like everything is a continual state of entropy...including my family. I wish I could see my friends more. I wish my governor wasn't trying to repeal every source of medical assurance we have for Ruby. I wish Ruby were "normal." I wish I were normal...whatever that means.<br /><br />Please universe!? Just a break? Just let one thing go right? Or am I too blinded by all of the bad things to see the good? I will try harder. I will keep trying harder. It must be that I am just not doing something right. If I could only figure it out and change I could make it better.Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-69639701122687583452011-06-30T23:03:00.000-07:002011-07-10T20:55:13.535-07:00The TruthThe Truth: Life is a giant pile of shit. Life is hard and messy and so damn complicated I feel like throwing up most days. Life is survival. We like to pretend we are separate from the rest of nature but our lives are simple. We fight every day for our right to breath and exist on this planet. Sometimes we get eaten, sometimes just maimed, and sometimes we escape death. Mostly life sucks.<div><br /></div><div>So why, oh why, do we do it? Why do we wake up everyday and go to work, or clean the house, or try to teach our children that the world is a magical place? Because despite all of the hardships life is wondrous too. The will to survive, thrive, and ultimately procreate is so strong that we are able to overlook most of the horrible things that surround us and drown in moments of pure joy. We take pause to witness the look on our children's faces when they learn something new about the world and all of the misery and pain fades. </div><div><br /></div><div>That is why I move in the morning. That is what keeps me going. Because most moments all I want to do is die. Most moments I hate my life so much that I want to carve into my own skin to break out of the panic I feel. Most moments I have to fight for every breath. But the moments that are brilliant shine so brightly that the scary thoughts are pushed aside. I lock them in a tiny box that sits somewhere between my throat and stomach and tell them to back the Hell off. And I try to dwell on the good. I look in my daughter's eyes and know that all of the pain is worth something. </div><div><br /></div><div>She deserves so much better than I can give. But I will keep trying. Even if it destroys me and even if it's not enough. Because I am a mother.</div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-50997190987146475372011-06-09T20:30:00.000-07:002011-06-09T21:23:54.979-07:00Taking RisksAs I navigate the waters of parenting a child with "exceptional" needs I find myself faced with all sorts of decisions I had never anticipated. Perhaps that's not entirely true--most of the crossings are the same, but my concerns are a bit different...more exaggerated. I paddle along in my parental canoe and down one fork in the river lies a safer calmer path. Down the other lies rough and exciting waters. Other paddlers in other canoes come to this break in the river constantly, but my boat is...different. It is not "meant" for the rough waters in the same way the others are. It is more sensitive to the bumps and turns that the more thrilling path entails. Ok, so I know this analogy is cliche but it works ;) <div><br /></div><div>I often envision this theoretical journey as I make choices in Ruby's care. I am now fairly in-tune with the special needs community and I find it easy to place parents of such children in two categories. Now I'm not saying that there are only two types of ways to parent a child with special needs. Every parent is unique, and most obviously, every child and their set of concerns is unique...hence the term "special" or "exceptional" or whatever label gets placed on children who don't fit perfectly in the box with the big 'ol NORMAL sticker on it. What I mean to say, is that I see many parents who approach their child's differences and medical concerns with extreme caution--with what amounts to an astounding degree of diligence, care, and protection. And I see many other parents who seem to risk a bit more in order to allow their child more freedom...the same freedom that "normal" children are awarded with less deliberation. (My there are a lot of quotes in this post!)</div><div><br /></div><div>Does that make any sense? Calm safe waters=exceptional diligence and protection. Exciting rapids=risk for the sake of freedom. Before I go any further I don't want to come off as denigrating either style...but I do want to work through my own thoughts on why I often choose to paddle down those rough waters with Ruby by my side.</div><div><br /></div><div>About a week after Ruby was born it became clear how different her life was going to be from the average child. And I remember vowing to my mother that I would do everything in my power to give her the most normal life possible. Upon reflection I think I should have said the most fulfilling life possible. I certainly hope Ruby does not have a normal life, I hope her life is exceptional! I hope it is full of joy and excitement. I hope that she can look back on her childhood as if everyday was an adventure...just as I do because that's what my mother gave me. And to accomplish this I feel as though I sometimes put her at risk.</div><div><br /></div><div>Ruby gets sick more than many children, and when she gets sick it certainly hits her harder than most kids. Part of this is due to her chromosomal deletion and her T-Cell count being on the "lower end of the normal range" as immunology put it. It also has to do with the fact that her pulmonary arteries, and therefore lung profusion, will never be as large or function as well as a person with a normal anatomy. But I refuse to deny her the same childhood experiences that so many other children have. I take her to museums, the zoo, and playgrounds. She interacts with other children constantly, and some of them are fighting colds when we see them. Hell, I even let her play in one of those disgusting ball pits at a Dairy Queen! We still take more precautions than some parents. Hand sanitizer and wipes are always close at hand. And I never knowingly expose her to people with serious illnesses. But I am aware that we do things that some parents with a child of similar challenges as Ruby would deem far to risky.</div><div><br /></div><div>So why do it? Because life is worth living. Her life is worth LIVING! Ruby's life needs to contain a certain amount of danger if it is going to be worth anything. She has ALREADY paid in more blood and pain than most adults can comprehend for her chance at life. And so she deserves the right to risk a bit more in order to receive all that her life has to offer. As her mother I am going to see that she can take those risks. And I will be there to minimize them. And I will be there to nurse her when she is sick. And I will be there to console her when things turn out badly. But I will also be the one to see that nothing-less-than-brilliant shine in her eye when she experiences a moment of pure joy, learning, excitement, or accomplishment. Because that my friends is a worthy life. That is a life I can be proud to give her...a life she can be proud she risked.</div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-83348057863059891502011-06-03T12:56:00.000-07:002011-06-03T19:59:36.898-07:00Camping, Signing, and Social Skills<img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDBaeQgP9aXEB38xYNScnrLsZOJjGgJWo6NkJlK5RfijiYGHlDA-mOruAO0YuNMRiEWsafPkx7C_-iU33d2J8TE6Zki2rKZ4p2NmC2pTLIh_09KT1AbZBQXNh9YFjgdWIw54pNeIG_ekVv/s400/240407_528615040398_133700170_30885985_4718756_o.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191762892906722" /><div style="text-align: left;"><br /></div><div style="text-align: left;">Mauthe Lake was wonderful. I'm happy to report that Ruby is a natural camper. She was in love. The trees, the hikes, the animals, the tent...she couldn't get enough of it. This, of course, meant to world to me because as a parent you can only hope that your children will find joy in the things closest to your heart, and to have that hope realized was wonderful. I have always felt that the only time I am able to truly let go is when I am camping. Time ceases to exist. The biggest priorities are eating, sleeping, hiking, and reading. Being in nature is certainly revitalizing, and it would appear that Ruby feels the same way.</div><div><br /></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4KHkfjbPFoVm2GhEPfLZenY7CH3EUzz1KBtxFe-W_c2ndNfJKnqpJE-my3hMBoPNDLbd1y6cdKtsjBCcfVKtHjCs_bhvj3ieD-ZF7GwqcvrY1UrCTG5F7KU_0B9kh8n4K4TkVud2I00py/s400/230255_528371119218_133700170_30882048_4235765_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191506942918882" /><div><div style="text-align: center;"><br /></div><div><div>Anywho...we are back home now and settling back into the rhythm of our life. And although I long for the lake and the woods I am glad to be home. I really missed my friends and it feels great to be around them again. They love me and Ruby unconditionally and that kind of love is hard to come by.</div><div><br /></div><div><div style="text-align: center;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAE36mphCT3FXJcW295iwWtdxFNYgDpdu5QdoeEDBVhh8yEr6qqQzJx47dVkrUzQFdegYFJKdHqzvjMU71rl4GNfxcj07YdYSdE0AD_6GKrrMYFoXOw86bPDimsxt_jXPhDIX_J6WhVa_c/s400/240413_528594646268_133700170_30885515_2062404_o.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191768980722306" /></div></div><div><br /></div><div>In other news: Ruby is signing more than ever. I can't wait until she speaks, but for now the signs have alleviated much of the frustration she has been feeling due to her lack of communication skills. Every morning she wakes up and the first thing she does is to run through every sign she knows as Dan and I narrate for her. She is clearly so happy to be understood. Her speech therapist reiterated what a smart child Ruby is. She has said that her receptive language skills are at or above age level...it's just the expressive language that has got her down.</div><div><br /></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqySVfe982Q4NBS5PULEqfRmZLxbVXUgrvVFUHzXgFb7PTvUkjUq7u1aG4tDkVf6yrnO9QEr1SkAHdhDGXsdf6z2d5kXK0dX-2psIyIWrKIAb5JAFK05g7NQQck1n2ZwuGEN5BTRF534Qa/s400/230052_10100122807549748_26715396_47105378_7346208_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191499312379586" /></div><div style="text-align: center;"><br /></div><div>Ruby has also been doing fantastic socially. She is far more comfortable with strangers as long as she is not in an entirely new setting/situation. One thing we have all noticed is that she is partial to men. My thinking behind this is that most of the nurses that Ruby has encountered are women. And (sorry to say it) but the nurses are the ones who do all of the "bad" things to her. The few men she has encountered in the medical system are doctors and their role from Ruby's perspective is to pop in a room after she's been molested by a nurse, talk to mom for 15 minutes, and pop out again. I assume this is why she is so much quicker to warm to men. </div><div style="text-align: center;"><br /></div><div style="text-align: center;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuty9Vct8Z7z5sf3C84AQ5RVvbRYC9JVVckxO11NRyFz9UsdDBTvVtu7rUvDlN3luiMr9M5huGrjqpSnVMKth1-eP3f8HzE1EircWzzyFad_y_racSdP8zWu1StnleqQQok5UQ-NldnSpC/s400/222834_528371059338_133700170_30882046_5515115_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191469233967586" /></div><div><br /></div><div>I am so worried that all of the progress that she has made socially will be destroyed in the next few weeks. We have a barrage of appointments coming up in June, with an ECHO in two weeks :/ Although it is non-invasive it <i>is</i> frightening for Ruby and that is just plain awful. Anything that causes my kiddo discomfort or fear is bad in my book...even though I know it is necessary. I'll be keeping my fingers crossed for everything to go smoothly, and for a good report.</div><div><br /></div><div style="text-align: center;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq-BLqMwNcHgWRG2W3erNmWz1yXXXcPLXVc4LjG38GS9hpe93PAoF1hPA97nENOaMqysRnwGbgpZRIozmdLvmK35CzXMfFKvwK1F144F9afQDNZGppC7h2FJfl2hi6jkvGvH213wIAidAI/s400/227342_10100122808772298_26715396_47105421_8277803_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191473739298658" /></div><div><br /></div><div>Well, I had better go because I can hear Ruby fighting off sleep as Dan is trying to put her to bed. I'm guessing he'll want to be tagged out soon ;)</div><div><br /></div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-ps_KXuXKL8gqpb48S7CbUhyphenhyphentrz6uBWhze3RRnoVhMD_q21faTfYQa2bBsl5wJSHEkddp1iEcPC0A5LTXEBjvIUdX0qhasLh00cYbdk9AXUDSyFK9ofPCUo_iyvaYKEbH-D_2ka-pocdY/s400/228262_528491068838_133700170_30883664_577029_n.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5614191489576528354" /></div></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-3567599275037241702011-05-04T19:46:00.000-07:002011-05-04T20:00:03.734-07:00Wound UpI feel so tightly wrapped the last few days...correction, the last few nights. The days have been fine. I've been so incredibly busy. Doing what I need to do to get Ruby through the day. Having fun with her and helping her to advance in all those areas where she needs it. But at night I have been stuck in high gear. Like I can't let go of the therapies and the feeding sessions and the play and the learning and the teaching and I just can't relax.<br /><br />It's exhausting. I'm exhausted. I knew being a mother would be tiring but, well...not this much. I feel like I need a break from this routine. Wake up, cuddle with Rubes for 30 min. Then it's go, go, go. Shower and dress Rubes and myself. Mix up formula and draw up meds. Deal with my constantly messy house. Therapy of some sort for Ruby. Water bolus. Play and read books. Lunch feeding and then bolus. Nap time. Break for an hour...usually to do laundry and maybe eat lunch myself. Then cuddle a crabby Ruby as she wakes. Bolus again. Play some more and work on OT, PT, and speech goals. Make dinner. Dinner Feeding. Shove food in my mouth at some point. Dinner bolus. Play play play. Bedtime at 9 and if I'm lucky I can sneak out and try to unwind for an hour before it's bedtime for me...and that's where I have been getting stuck.<br /><br />I just can't feel at peace. I'm just thinking about what I have left undone. How that baby gate is STILL not installed at the top of the stairs. How the laundry is piled everywhere in the bedroom. About how in Hell I am ever going to get Ruby to talk. About getting her to eat. And about whatever new bug or GI issue is plaguing Rubes at any given moment.<br /><br />I need a vacation. Thank God camping is only 1.5 weeks away! Mauthe Lake...I need you!Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-44915709136653879312011-04-19T21:23:00.000-07:002011-04-19T22:07:32.935-07:00Toddler-hoodI haven't written in a while but I wanted to take the opportunity to describe the person Ruby is developing into. She's such a marvelous child so I thought I'd let you all in on some of the things she is all about these days.<br /><br />First and foremost Ruby LOVES books...no is OBSESSED with books. It's completely clear that she is the granddaughter of a librarian ;) She would be perfectly happy if all we did together was read. And that is not an exaggeration! She even goes to sleep cuddling her books! She is able to pick out most letters now, and I swear she is starting to recognize her name. What a smarty! We always joke that she is going to learn to read before she learns to talk.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8HfNEk67jH4jAJT_OYbMaRpIv47JHeDV2Ma2AY6uohssqkk_9POsLSjpmgx1n1rqCbIfNAm7aU8MGOFU19FaHna3fRKzcdyT9kH3BTAAleZkzagQGPxjt4ibhrgKLS27LbTxpbKP_AOrv/s1600/221753_526986084838_133700170_30864007_5437672_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8HfNEk67jH4jAJT_OYbMaRpIv47JHeDV2Ma2AY6uohssqkk_9POsLSjpmgx1n1rqCbIfNAm7aU8MGOFU19FaHna3fRKzcdyT9kH3BTAAleZkzagQGPxjt4ibhrgKLS27LbTxpbKP_AOrv/s400/221753_526986084838_133700170_30864007_5437672_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5597524686587830162" border="0" /></a>Reading<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxiyAyBpFPTMniKpBwLaZfqhyktveO9EQqLJpa2cgCmSSF5q8gP_j4zSboLUmbC9a24OgtSG_YEfS_7qCP7dBw60W6w_2vG80i1dI1UvGF-A-tSi86A99fn41r6LmdgBEtPLvPTBdSKYz/s1600/206348_526729963108_133700170_30859270_1054272_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiyxiyAyBpFPTMniKpBwLaZfqhyktveO9EQqLJpa2cgCmSSF5q8gP_j4zSboLUmbC9a24OgtSG_YEfS_7qCP7dBw60W6w_2vG80i1dI1UvGF-A-tSi86A99fn41r6LmdgBEtPLvPTBdSKYz/s400/206348_526729963108_133700170_30859270_1054272_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5597524695237957442" border="0" /></a>More reading<br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYwGNoYQy7KaZo8yX43D9dLjMORgjZ9rXx_O-HTNELUBer_fo8psk7m6qj-mi8TcIrSuVBE-OMnZAn6nwydvisl8IWSMAAeJeASolAKtdaaa0pbxpfr0Tc0fwJ90NT3ePPN0sqOmK2W6M/s1600/217420_526663750798_133700170_30858131_5446055_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijYwGNoYQy7KaZo8yX43D9dLjMORgjZ9rXx_O-HTNELUBer_fo8psk7m6qj-mi8TcIrSuVBE-OMnZAn6nwydvisl8IWSMAAeJeASolAKtdaaa0pbxpfr0Tc0fwJ90NT3ePPN0sqOmK2W6M/s400/217420_526663750798_133700170_30858131_5446055_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5597524683179896338" border="0" /></a></div><div style="text-align: center;">And of course she's got to have a book in the car :)<br /><br /><br /></div><div style="text-align: center;"><div style="text-align: left;">Other loves in Ruby's life: trees and all plants and flowers. Whenever we go outside she squeaks and points to every tree. She hugs them, pets them, and tries to kiss them. It's delightful. She also smells every. single. plant. Note that I say plant and not flower, she does not make too much of a distinction :)<br /></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF3Y-ruM1_ju0kI2flBtJZlts-k3zI4V7AzFGI3HS5OI8cNhnbwamNuH2GHggZswH7Q58b1N8dPkTTjN9dM6sZmQzTqGVUFyIXf0KVjv0FcbA_whKgkFHDd9UyLChXdqDseWyaaGo_tXBD/s1600/195943_522765398128_133700170_30846572_4599813_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF3Y-ruM1_ju0kI2flBtJZlts-k3zI4V7AzFGI3HS5OI8cNhnbwamNuH2GHggZswH7Q58b1N8dPkTTjN9dM6sZmQzTqGVUFyIXf0KVjv0FcbA_whKgkFHDd9UyLChXdqDseWyaaGo_tXBD/s400/195943_522765398128_133700170_30846572_4599813_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5597524673392158834" border="0" /></a>Loving the trees<br /></div><br /><br />She has been wanted to play outside a lot lately...even this crazy weather hasn't made her wary of the outdoors. She is more than willing to walk on grass now, and seems to love her ability to explore the world on two feet. She has been really into the slides and climbing aspect of the playground. Swings...not so much.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdAeoJgPflbVpGN0ClFu4R9LIKoGn-STuZTgGUw0V4jlUT5PF_yzlcnahmEoiiK47UTMv-DkNFp3-WovKlHelrYMiayOcz0PLPazFZ_TuMQ-tnFzo1oQkv8SGkY_W6LUS55YuAWZH847O0/s1600/193430_526404904528_133700170_30854774_6437779_o.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 299px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdAeoJgPflbVpGN0ClFu4R9LIKoGn-STuZTgGUw0V4jlUT5PF_yzlcnahmEoiiK47UTMv-DkNFp3-WovKlHelrYMiayOcz0PLPazFZ_TuMQ-tnFzo1oQkv8SGkY_W6LUS55YuAWZH847O0/s400/193430_526404904528_133700170_30854774_6437779_o.jpg" alt="" id="BLOGGER_PHOTO_ID_5597524667388318434" border="0" /></a>Playground fun<br /><br /><br /></div>Ruby is strong willed. She knows what she wants and will not be swayed from her chosen path. I LOVE that about her! She is just like Dan and I and although there are problems that arise from that type of personality, it is also the personality of a survivor. Ruby is most certainly a survivor. And it's great to see that she has an opinion about things, and that she's not afraid to express it. Believe me, despite her lack of language she expresses it VERY clearly. She is a very expressive child, although this can be hard for strangers to see because she is quite wary of them.<br /><br />Ruby is also very sensitive. She gets frustrated quickly when learning something new. She is shy around strange adults, but warms instantly to new children. She is at peace with her family and her home. But she is very willing to explore new places...as long as strange adults who want to interact with her don't come with them. She does not like loud noises, especially sudden loud noises.<br /><br />Ruby does love music though. One of my favorite things is to catch her jamming in the backseat while Pandora is blasting. She dances all the time. And very often can keep a beat with her hands, feet, or head. She is definitely going to be an Irish dancer :) We love to dance around the house together and she always claps after a song is done...even if there is no clapping on the track.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvCx1Lz3yuq9-hkmf9EPNF4aB6RjgXNjgJ_sNo8nUIdLsZZ7HdRwz7SLSRUtmHjba6dcTFVCdEZHpH9MpPismO24Jfsrbm-dafiWbezg1vrLKJSjybfPqY38L4INtoJYIaTQ690CsxmFt5/s1600/215607_527008769378_133700170_30864373_1149873_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 298px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvCx1Lz3yuq9-hkmf9EPNF4aB6RjgXNjgJ_sNo8nUIdLsZZ7HdRwz7SLSRUtmHjba6dcTFVCdEZHpH9MpPismO24Jfsrbm-dafiWbezg1vrLKJSjybfPqY38L4INtoJYIaTQ690CsxmFt5/s400/215607_527008769378_133700170_30864373_1149873_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5597525410591168706" border="0" /></a>Action shot! Totally an Irish dancer :)<br /><br /></div><br />She is signing a few words. Her favorite one is "bird." She signs this not only for birds, but for planes in the sky, flies, and butterflies as well :) She also uses the sign "fish" when she sees the moon. I have no idea why, but it's pretty cute. The other day Dan and I were out walking with her in the evening and it was like she noticed the moon for the first time. She couldn't take her eyes off of it! She was absolutely mesmerized. Now every time we go out at night she looks for her friend the moon and stares lovingly at it.<br /><br />Anyway...there's clearly so much more to my little girlie but that's a taste. She is such a miracle. I am loving every day she grows. Toddler-hood is a wonderful phase of life, and I am so grateful to be able to experience it with her.Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com0tag:blogger.com,1999:blog-181891421117355117.post-34580761398049757702011-03-14T00:48:00.000-07:002011-03-14T01:13:07.898-07:00Can't SleepAs I type it is 2:48 AM. I have not been sleeping well these past few days. Perhaps it is because of the sinus infection I've been fighting. Perhaps it is due to the fear that I constantly fight to keep at bay, knowing that at any moment our lovely Governor may make sweeping cuts to the programs that allow my daughter to live and thrive. Perhaps it is from the constant pressure, confusion, and frustration that comes from dealing with problem after problem that Ruby seems to be battling any given day or week. Perhaps I am just so relieved to have time to think and simply exist without the demands of being a good mother, wife, daughter, sister, friend, etc. that I refuse to relinquish such precious time to sleep. Whatever the cause. Here I type at what is now 2:53 AM intermittently crying and thinking and playing on the computer. <br /><br />Everything felt so heavy this last week. I felt like I had 2o lb weights attached to each limb, in addition to the most suffocating 50 pounder on my chest. The week before this had been wonderful. Despite the bug Ruby was fighting off that week I was on. I was keeping up with housework, enjoying every breathe my lovely daughter exhaled, and relishing in the happy moments of my life. And then last Sunday, one week ago, I felt the weights pressing down on me again. Suffocating. That dreaded wasteland known as numbness began to take over. And I smiled for my daughter and I played with her and I still felt dead. <br /><br />How is it that one week can feel so vastly different from the next? How is it that one day I am fine with all of the problems that lay before me and the next those same troubles pin me down with unrelenting force? I know this will pass. If I only smile enough and think less. If I can only will myself to take pleasure once again in the happy moments then the painful ones will feel smaller and less significant. But sometimes it is so hard to gather the strength to do that each and every day. But I will. Tonight I will cry and tomorrow I will smile. I will gather Ruby in my arms as she wakes with one eye glued shut and kiss her sweet face and I will smile. I will laugh at her joy and feel pride as she walks. I will read her books and take pleasure in every new thing she learns and absorbs. I will love her with every bit of my soul and feel her love for me returned. I will. I will. I will.Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-62452939594954427412011-03-02T16:56:00.000-08:002011-03-02T20:59:36.464-08:00New ShoesI don't want to write too much tonight. But I just wanted to say that in the midst of all these sickies that have been claiming our household, I find so much joy in raising Ruby. She has started to walk!!! Check out the video on <a href="http://www.facebook.com/?sk=messages&tid=1883110599169#%21/video/video.php?v=896322206218">Dan's FB page</a>. Today my sister and I took the babies to the mall to get Ruby her first pair of "real" shoes. As we walked out of the store Casey kept smiling at me. I asked, "What?" And she said, "You're just beaming!" And I was! I can't help myself! I am just so immensely proud of her! And somehow buying new shoes made her walking feel more official. ;)<br /><br />Walking opens up a whole new world for her. And the wonderful thing is that she KNOWS it! She is so happy and proud of herself as she toddles across the floor. So much frustration that she was carrying with her has been lifted away and I can tell that she feels free. It is absolutely magical! She is such a miracle. Such an amazing gift. I am so madly in love with her.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_vBUrM6wnUM_fVlBkX1pbDYoeSPGRRIWRzDYHlfazG1E-A1KlQ80Xr6A7VLqBwbnG_HjIqhP3laLGEjAMmaBHkfUvQSpbFM8IEFVBphRskTtMlyXK-wQ77-qIlSIk7QFEPJNW556L76r/s1600/183477_522262470998_133700170_30838421_6777750_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie_vBUrM6wnUM_fVlBkX1pbDYoeSPGRRIWRzDYHlfazG1E-A1KlQ80Xr6A7VLqBwbnG_HjIqhP3laLGEjAMmaBHkfUvQSpbFM8IEFVBphRskTtMlyXK-wQ77-qIlSIk7QFEPJNW556L76r/s400/183477_522262470998_133700170_30838421_6777750_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5579712632167262610" border="0" /></a>Who needs pants when you have awesome new shoes!?<br /></div><br />To all of you whose children do walk and have no special needs, remember to hold these milestones in reverence. They do not come so easily for everyone and are such precious moments. Be proud of every new thing your child learns and never take anything for granted. I know I don't!Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-48221782868017362812011-02-21T18:14:00.000-08:002011-02-21T18:46:45.494-08:00Politics...AgainIn Wisconsin Governor Scott Walker has declared war on its citizens. Some of them are aware of it, and some aren't. I am. I am aware because in this "Budget Repair Bill" there are quite a few items that threaten the life of my child. This bill, along with so many other heinous acts, allows for a very small and very conservative group of legislators, who have all but pledged their souls to Scott Walker, to exclusively make sweeping cuts to our state's Medicaid program. My daughter life is at stake. And that is one of the reasons I can not sleep at night.<br /><br />When I bring this up to others, I often hear conservatives say that, "cuts must be made" or "I am not responsible for your child." Here is the problem I have with that: If a child is kidnapped would we ask parents to shoulder the costs of a state-wide search? If a child is murdered, would we demand that parents pay to seek retribution? If a child is threatened with sexual abuse should parents pay for a task-force to rescue that child in order to prevent the psychological damage that would be caused? No. The answer is always no. We pay for police. We pay for the protection of our children and ourselves through our taxes. So why is my child's life less valuable?<br /><br />Undoubtedly when a child is rescued from such horror we rejoice. The media covers the events and all of the officers and political leaders involved are praised. I suppose that does not happen when a special needs child takes their first steps. Or when they say their first word. Or even when a special needs child is able to simply live because of their home oxygen equipment or their feeding pump. The parents rejoice these victories but the leaders of our city and state get no attention. And yet these are true victories. These things come to pass because the state supplements pay for the therapies and for the medical care these children need to live. The state does not allow these children to perish because a life is worth something! Not just to their family, but to society. We collectively value our children, just as we should value each other. We need to do this because it is the whole point of gathering together as a society...Otherwise what is the point?<br /><br />If Walker and the conservative lawmakers in this state get their way, Ruby will suffer. Her quality of life and medical treatment will suffer, make no mistake that is not an exaggeration. If you support Governor Walker you want my child to suffer. You would rather save yourself a $40 tax hike than ensure the life of my child. Are the lives of our citizens with special needs so worthless to you? What about the elderly? The poor? Are they worthless too? Yes we must make cuts...but somethings can NOT be cut! LIVES CAN NOT BE CUT! Find another way Scott Walker, or the lives lost will be on your head.<br /><br /><div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJZAGdbOo1lvG966Nic33ENKLJTYZ-cltAGM7SbwQCYJHFjqU1wonTokshyjK1s_TbDuPQ0cJ4PsXJoWjaJKUkJ7GuNt3m8rZcTiwdvXU02qDAHaGnqX6L8VRY-C3TnBLcMWjKpMuiShs/s1600/183488_521914198938_133700170_30834288_2266931_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRJZAGdbOo1lvG966Nic33ENKLJTYZ-cltAGM7SbwQCYJHFjqU1wonTokshyjK1s_TbDuPQ0cJ4PsXJoWjaJKUkJ7GuNt3m8rZcTiwdvXU02qDAHaGnqX6L8VRY-C3TnBLcMWjKpMuiShs/s400/183488_521914198938_133700170_30834288_2266931_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5576339380891059842" border="0" /></a>I mean seriously!? How could you not want this little girl to make it?<br /></div>Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com3tag:blogger.com,1999:blog-181891421117355117.post-55046405189591191542011-02-15T18:05:00.000-08:002011-02-15T18:20:16.778-08:00Cardio UpdateRuby had her first cardiology appointment in 6 months today!! That's the longest we've ever gone without a visit to them...it was a wonderful break. Today was stressful, as all appointments are. Ruby HATES going to the hospital and as soon as we pulled into the parking structure she started becoming upset. It's funny that she's fine with parking in the 15 min lot outside because whenever we park there we are just running into the pharmacy to pick up meds. She clearly knows that parking structure=appointments=her personal space being violated. Nothing invasive had to happen today, thank goodness, but Ruby still screamed bloody murder every time a nurse/doctor came within 2 feet of her. Poor kiddo...looks like diaper changes are going to be hard for a while. She always regresses after a visit to the docs and won't let me change her without being terrified I'm going to hurt her. So sad :(<br /><br />BUT the appointment itself brought good news so I will try to focus on that! Ruby no longer needs captopril! How awesome is that! Captopril is, by far, her most annoying med because we have to administer it 3 times a day. This will mean Ruby only needs 2 meds every morning. Truly a wonderful development :) Ruby will need an ECHO in 4 months and we will find out more about her heart function then, but for now...it's all good. Another good development is that Ruby gained some more weight! She is well over 21 lbs. This is actually a pretty big gain over the last 2 weeks so perhaps GI will tell us to feed her a bit less. I would welcome that because it would mean she might be able to come off of the feeding pump quicker. But that's all conjecture at this point so we shall see...<br /><br />See? I promised you a happier post and I delivered. Yay me :) Also, sorry for the lack of pics but I can't pull them off of facebook to put on here because my computer has no space! I'm sure there is an easier way to do it but I'm too lazy to figure it out. Most of you are friends with me on FB anyways so you can always go to my page and check out how cute Ruby is there ;)Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1tag:blogger.com,1999:blog-181891421117355117.post-46140198482340534752011-02-03T20:16:00.000-08:002011-02-03T21:43:12.498-08:00Mind Garbage*The title of this one tells it all. This is just the nasty stuff that's been rolling around in my head the last few days when it's late at night and Ruby is asleep. I apologize in advance.<br /><br />This blog has become invaluable to me, mainly in its purpose of allowing me to truly express how I feel about mothering an extraordinary and yet medically complicated child. I belong to several groups as a mother. I don't mean the card-carrying kind of groups. I mean that I place myself into categories as a mother. I am a mother of a child with a chromosomal abnormality, a 22q mom. I am a "heart mom." I am also a baby-wearing, co-sleeping, natural child-birth kind of mom. The other relationships with mothers that Ruby and I associate with have mostly grown out of these three categories. And I am thankful for the internet and the ability to connect with some of these other families that it has provided. And yet sometimes, as we all do, I feel so alone in my role as a mother to Ruby. While it is true that other parents share similar concerns for their children as I do in raising Ruby, sometimes I just feel so weighed down and alone in it all.<br /><br />From the internet we only see snipets of what other people's lives are truly like. Some people only share the best, and others share the worst. That leads me to make comparisons that aren't truly accurate or fair. This also leaves me feeling alone and inadequate. We are all so horribly trapped in our own minds, aren't we? No one can feel exactly what we feel and even when we try to bridge the gap between us we usually fall short. Words are such a limited way to communicate. Empathy is so difficult. The only person I've ever seen succeed in being truly empathetic is probably my mother. That woman cares so much...about everyone...it amazes me. But now I'm getting off topic...<br /><br />This blog is a way for me to bridge that gap. To let people into what I'm thinking and feeling, mostly for selfish reasons but also because I want people to know what I feel in the hopes that they will feel less alone. Perhaps they can relate to some small part of my experiences. I know that's why I read other parents' blogs. They give me hope and make me feel less isolated. Sometimes they do the opposite, because well...heart defects are unforgiving. They kill. And reading other children's stories sometimes remind me of that. It scares me so much. Sometimes the fear is paralyzing, as I'm sure I've mentioned before.<br /><br />Ruby has been coughing a lot at night and during her naps. That scares me. Would a "normal" parent say it's a cold and move on? Maybe not. Maybe they would worry about it like I do. But I know Ruby's lungs aren't great. They never will be. Her lung profusion isn't the same as the rest of the population and she will always be more fragile because of it. So every cough frightens me. Especially when it does not seem to be connected with an obvious virus. I plan on calling her ped tomorrow if the coughing persists. And it's probably nothing but we'll see.<br /><br />So I'm going to get right to it: I don't want my child to die. I don't want her to die before me, but I know that is most likely. I want her to make friends, and date, and get into trouble, and do all of those things. What will her life be like as she grows? Will she be significantly delayed. Will she be intelligent enough to know she is different and see how that difference separates her from her peers. Will she even get a chance to think about that? Will she die after her next surgery? Or the next one? I wish I knew. I know that probably sounds crazy, but if I knew she was going to die before she reached adolescence at least I wouldn't have to worry about those awful years. I wouldn't have to worry about whether or not to have another child. Dan and I talk about it with each other. And we both know we wouldn't want another child if we lost Ruby. I just don't think I could do it--to raise another child and have that child not know their sibling. I think I'm too selfish and that I wouldn't be able to adequately raise another child with Ruby gone. I would be to lost and I think that I wouldn't be a very good person, let alone a good parent. And yet, if Ruby lives and thrives as she is now, I want her to experience the joy of a sibling. And I would love to have a house filled with children, just not without her.<br /><br />I know how well she is doing at the moment, but I hear of so many deaths. And I know that my child is not exempt from the evils of her CHD. Some people seem to have the attitude that things happen for a reason or God has a plan, but I don't think that. I believe in God but I don't think He works like that. I just don't. And maybe that would give me solace and I'm glad it helps others, but to me...well my brain just doesn't allow that kind of thinking. I really hope that doesn't offend anyone because that is not my intent...just trying to bridge that gap. <br /><br />Goodness, so many things have been turning around in my mind lately that this is quite a jumble. There is more too. I've been angry. Angry that Ruby is different. Angry that she has to fight so hard for every new skill. Every milestone. Angry at other people for not understanding. Angry at other people for not trying to understand. All irrational feelings, because I know that the people around me love and care and do try to understand. But sometimes I still feel it. I am angry that for the first time I felt a pang of jealousy when my sister told me her son ate sweet potatoes for the first time and loved it. Not angry at him or her but with myself for feeling that way. I am foremost happy for her and him because I love him like he's mine, but I just wish Ruby could eat. If I did have another child and they were eating before Ruby I know would feel the same jealousy...how weird is that? I wish it wasn't so hard. That every. single. meal. wasn't so damn hard. It's so effortless for some and I know that my sister doesn't take it for granted because she feels Ruby's struggles along with me, and so when her son eats she knows exactly why she should be so happy and proud of him. And I feel that way too. Unfortunately there is that nasty pain in my chest that hits me back and reminds me that Ruby is different. Different. Different. <br /><br />And I just hate it. So much that I want to scream. And most of the time I don't feel like that but right now I do. It probably seems like a feel that way all of the time from the posts on this blog, but the truth is the only times I feel that way are when I write a post like this. Because sometimes it builds up to a point and erupts on here. Most likely this one is due to too much time sitting at home during these snow days with too much time to think. Don't get me wrong I've loved these lazy days, but I think tomorrow an adventure out of the house is in order. Because lately, I've been thinking far too much. Thinking about all of the times I have been out in public and given Ruby a bolus feed. People stare or they avoid. I don't know what I expect of other people. Perhaps just a smile and nod as you would to any mother feeding her cute toddler. I don't know. It's not their fault...it's just irritating. I often push back feeds to avoid the issue when at others' houses. I don't know why, because these people are my friends and they would understand, but it's sometimes just easier to avoid the look on people's faces when I pull out the tubes. A sense of guilt is washing over me for feeling that way. I should never be embarrassed. Ruby has gone through too much for me to ever feel embarrassed or uncomfortable. And if I feel that way now, what kind of self-value will that give her? Sometimes I feel as if all I do is fail her...even though I know that's not really true. After all, I'm human and susceptible to all of the same unwanted emotions that we all get from time to time.<br /><br />OK, that's enough negativity for now. Next post will be a happy one I promise ;) Just needed to vent. And so there it is. Sorry for being such a downer but if I get all of this out on here, then I seem to be able to function as a happier and more stable person in the real world. Thank you internet people for listening...or reading...or whatever :PKerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com4tag:blogger.com,1999:blog-181891421117355117.post-85301296208064167322011-01-26T11:17:00.000-08:002011-01-26T12:16:21.364-08:00As Always...Two Steps Forward, One Step BackI fear that the last time I posted with overconfidence on the subject of Ruby getting off of her feeding pump. Everything had been going along fine until we hit 8 oz boluses. We had been increasing the amount by 1 oz per bolus every week and she had NO difficulties. Then we hit 8 and she started projectile vomiting. After a few more attempts it was clear that it was not going to happen so we backed down to 7 oz. But ever since we tried 8 and she vomited, she has been grunting and straining to push the food back out of her stomach and into the syringe which have turned feedings into a complete struggle. So now we are back down to 4 oz boluses...where we started. And she still has some trouble allowing those feeds to go in smoothly :(<br /><br />All of this has got me down. Really down. I was so happy about her reaching the 8 oz goal. It meant no more feeding pump...EVER. But that is not the case. And worse it seems like we might have ruined the whole bolus feeding experience for good. I'm afraid this has worsened her oral aversion as well. She seems to think it a negative thing when her tummy starts feeling full, which was the exact opposite intention of switching to boluses. She has not been eating much at all these last few weeks. It's been a big deal if we can even get her to taste again. Sadness all around.<br /><br />I'm really really hoping these changes won't stick and that she'll get back on track with her feedings and with eating soon. It's so hard to see her falter and not know what to do to help her. I'm tired of it. Tired of every meal being a battle. Every feeding a nightmare. I know I should be grateful for the progress she has made and rejoice in things like her being off of the pump during the day, but right now I'm just bummed. It never seems to get any easier even when it does. She is dealing with food so much better than she was this time last year and yet the distance between how she interacts with food versus most other children still feels so very far.<br /><br />Anyways, I don't have too much time to edit this or finish off in a nice way...just wanted to explain what's been going on lately. Let's hope for better days soon.Kerry Tylenda-Emmonshttp://www.blogger.com/profile/10935025969252166465noreply@blogger.com1