Grateful

Time 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!

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.

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.

Chaos and Happiness

I 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!


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!


Other news:
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.

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.

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.


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!

I think that's all for now. Thanks for not forgetting us!

Ruby-Ronan Troubles

I haven't felt like writing much lately. But I'm going to try to push through this...

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).

See that creepy baby glare...pure evil (according to Ruby). And I'm TOTALLY kidding in case you have no sense of humor.

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.


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.


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?


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.


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.

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.

The Truth

The 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.

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.

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.

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.

Taking Risks

As 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 ;)

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!)

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.

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.

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.

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.

Camping, Signing, and Social Skills

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.

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.

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.

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.

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 is 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.

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 ;)

Wound Up

I 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.

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.

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.

I need a vacation. Thank God camping is only 1.5 weeks away! Mauthe Lake...I need you!