Bad Day

Today 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.

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.

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.

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.

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.

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...

Saying Goodbye to the Green-Eyed Monster

Jealousy. 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.

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.

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 should have had.

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 best 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.

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."

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 ;)

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!

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!

Toddler-hood

I 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.

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.

Reading


More reading

And of course she's got to have a book in the car :)

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 :)

Loving the trees

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.

Playground fun

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.

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.

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.

Action shot! Totally an Irish dancer :)

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.

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.

Can't Sleep

As 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.

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.

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.

New Shoes

I 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 Dan's FB page. 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. ;)

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.

Who needs pants when you have awesome new shoes!?

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!

Politics...Again

In 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.

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?

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?

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.

I mean seriously!? How could you not want this little girl to make it?

Cardio Update

Ruby 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 :(

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...

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 ;)

Mind 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.

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.

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...

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.

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.

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.

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.

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.

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.

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 :P

As Always...Two Steps Forward, One Step Back

I 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 :(

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.

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.

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.

Sassy Toddler Syndrome

Last week was rough. Ruby became a toddler last Wednesday...seriously it happened that quickly. Because of her chromosome deletion I'm always on the lookout for behavioral disorders. And as much as I HATE to put her in that box and slap a label on the outside, it's so hard not to. I was so stressed those first couple days. And when stressed I become vulnerable. Susceptible to ideas like, "draw a hard line with your child," "set strict boundaries," "be rigid with discipline." But I know that I am not that mom. That's just not who I am. I am not a screamer. I am not strict. I am quiet...most of the time. And I am flexible. That is how I am going to parent my child.

Ruby is not quite 1 1/2 years old. She is in an odd stage of life. She understands desire, want, and pleasure, but has an extremely limited concept of self-control or patience. She can't even communicate her frustrations and I know she feels limited by her inability to walk and move the way her peers do. All of these things lead to minor behavioral problems. I see very clearly now that they are NOT abnormal behavioral problems. Ruby is simply a toddler.

I know that Dan and I were both demanding children. Actually Dan is still demanding :P We are very emotional, we are very contrary, we are VERY stubborn about certain things and as toddlers I can only imagine how these traits exhibited themselves. Undoubtedly Ruby is like us. She is very determined and insistent, and while these characteristics helped her to survive her first few months in this world they can make for a combative toddler. Thank goodness she is also incredibly affectionate, bright, compassionate, and adorable. :)

I feel renewed and freed by this realization that she is simply growing up. And I know I can handle it, because my mom could handle me, and Dan's mom could handle him--although I have no idea how! But here's how I plan to "handle" Ruby: I will love her. I will acknowledge all of her accomplishments and all of her good behavior. I will not sweat the small stuff or turn our house into a war zone where it's parent vs. child. I will keep things upbeat and positive and transition quickly out of discipline with distraction. And I will have fun with her! Because after all this is a very little person we are talking about. What good does it do to scream at or punish someone who can not understand what is going on. The only thing she will learn from that is to mimic aggressive and negative behavior and that is not who I want my child to be. I think that some people are too quick to use the word spoiled when a kid is merely being a kid. A child is not spoiled because they whine or throw a tantrum or two. They are a CHILD! That doesn't mean I will reward bad behavior or allow Ruby to hit or have everything she wants just because she wants it. It means that I will discipline her the way a 1 1/2 year old should be disciplined--with a whole lot of forgiveness and understanding for what she is going through as a developing human being.

Happy Holidays!

Hope everyone had fun during the Holidays, I know our family did! One Ruby plus one Ronan equals a whole lot of happiness for everyone. Both Christmas and New Year's Eve were relatively relaxing holidays for us and that was just fine by me!

"Uh, Ruby? You know there are presents under the tree, right?"

Ruby has been doing great. She hasn't had a cold for a week or so and that's been a big relief. Boy did we need a break form runny noses, coughs, and keeping ourselves in quarantine. It's been nice to be out and about like we usually are. We've made it to Discovery World and the Domes recently which were fun as always. Casey and Ronan joined us at the Domes, and both kiddies adored it. I really hope our babies have as much fun growing up together as we did. Every day was an adventure. :)

Some of the family at Christmas. I love these people :)

In other news I'm pretty sure Dan has gotten me addicted to coffee. I've always liked coffee but since we started trying to have kids I cut the habit so since then I haven't had much caffeine. But now that he's working from home there is always coffee being made and I inevitably drink some. And now I am dead to the world until I have at least two cups...bummer. I know this is not a Ruby update but I really miss being able to just wake up and go! Husbands...

Need I add a caption to this?

But speaking of a Ruby update: GI-wise she has been...well, she's like a different child! 75% of her feeds are done as bolus feeds during the day, with the other 25% still on the pump at night. This is AMAZING! It means that she does not have to be attatched to that thing during the day, a true joy now that she is so mobile and close to walking. It's also is a sign that her reflux is under control. Last year Ruby was on the pump for 20 hours a day, being fed into her intestine, and her stomach was still vented 24/7 into a sputum trap. What a lovely name, right? So much fun to explain that one to strangers. "What's that? Oh, that's her sputum trap. Those are just her stomach juices sloshing around in there...just ignore it." Sure... Anyways, now she is fed into her tummy, and is being fed in a far more "normal" fashion. I can honestly say I never thought she would get to this point, at least not by this age. I am so happy for her, and I believe she will be off of the pump entirely in a few weeks! Yay, Ruby!!

Passed out after Christmas fun

Other than that life's been good...normal good. Sometimes happy, sometimes sad. I'm looking forward to a good year with my baby. Hopefully it will be surgery free and we won't have any major hospitalizations. So wish us luck!

Happy New Year! And YES, she made it to midnight!