My darling girl, I have not yet made a habit of writing to you yet, or to your sister, and I should be doing so. I have filled my time with telling others of your exploits but I will make an effort to periodically record a moment of reflection for you, just about you, just to tell you of my love for you.
Two years ago today I sprung you from the hospital. For a little while I wondered if I'd get to, or if I'd end up taking you back over and over. As it turned out, your metabolic disorder, though terrifying to me at the outset, has been much less of a worry, while an absolutely unfair brain injury has plagued the two of us much more. I was worried we'd be getting IVs all the time, and then, after finding you didn't move as I expected you would, I started looking for reasons why, and after the diagnosis of hemiplegia at eight months, now we are constantly on the move getting you to every kind of therapy we think might help you really get on the move on your own. I'm sorry to keep you going so much, but I think you'll thank me later, or I wouldn't be so insistent.
My dear, you are fantastic. All your therapists are pleased with you, saying your the best at this or that they have ever seen for a girl with your level of CP. You are praised for the many ways you overcome or work around the disability caused by the brain injury you have, but more importantly, you are enjoyed by all who meet you. You may not like your first meeting with some folks, for others you do, but in the end, when you love someone or just feel like charming a receptionist, you sparkle and shine like the most brilliantly cut diamond. The volunteers at the center where we do hippotherapy thank me for letting them work with you, they enjoy you so much. I am fairly certain they fight over who gets to assist you.
Your winning personality shines through your every action. You've been practicing flirting for ages now, but now you are a star performer. I am delighted with you, my darling girl. You are the icing on my cake.
My little mind is all a jumble. We had the joy and excitement of Hannah's second birthday, which marks a major milestone not only in her transition from baby to toddler but also in that she has not been hospitalized for an MCADD related illness since her release from the hospital after her birth. We have made two nighttime rushes to the pediatric ER, but were held captive only a few hours and turned away. I'm proud! I'm successful! I don't suck! We've also now had the two year anniversary of her metabolic crash, a date which I believe marks the fatal drop of oxygen that bought us the CP of which we are so very, very fond. I spent that day, last week, hiding it from the world but I felt myself counting down the hours to the time two years ago when they charted she had signs of hypoglycemia, the time I know they did the first blood draw, tried to give her formula, drew the next blood for testing, and then waiting 45 more minutes to test again and place the glucose IV that saved her life. And where was I? In and out of the nursery between bouts of vomiting and diarrhea, but still, trusting in the nurses to pull it all together. We didn't get the MCADD diagnosis for days and there would be no way for the docs to know and anticipate that waiting on that glucose level would be catastrophic because of her MCADD, but still, in the textbooks, they say you always treat hypoglycemia in a newborn. Always. I wonder and I ask why, and I kick myself a bit and feel really angry with the universe because I actually love nurses and don't really want to blame them, since I actually credit them for getting people well. I know they waited for the nurse who is the best at newborn IVs. I wish they had given me second best on a faster timeline. I hate that Hannah has to battle to walk, to learn to use her hand, will have her good hand immobilized so we can motivate her weak one, will maybe need botox or surgeries, and mostly that instead of just enjoying her, every moment is a moment I should be teaching and encouraging her use of her body, even as I know my family has far fewer burdens than many others carry. I'm still pissed off.
And then here is Hannah, in all her Hannah-ish glory, who is making enormous progress in all her therapies and charming all her therapists and as far as I can tell having a pretty good time. She just learned to say her name as "Hnana" with her sweet girlish voice. She'll tap her chest and say it quietly, and smile at me, if I touch my own and say "Mama." She is so obviously delighted with her increasing mobility and strength. She runs! Somewhat crookedly and drunkard like, but she is moving quickly. I love to see her walk over to the window seat, and casually lift one foot halfway, standing as if balancing is no chore and her feet can just sit around looking dainty and girlish while she gets a toy or shares a laugh with her sister. She'll move into the group of kids closer to her age at day care in two weeks, possibly skipping the not quite twos and head for her age group, who passed her by when she didn't walk on schedule. Her therapists all agree on this for her cognitive and social development, and to show her a model of her movements on kids who are on target, and I do agree, except the part of me that says she is small, and light, and tippy, and will maybe have setbacks with growth spurts and therapies that will have her coming to school in casts or getting uncomfortable treatments. And then the day care administrator showed me the kids who she'd be with, who will be her kindergarten cohort, and I watched a girl maybe 8 months older than Hannah fly up the curved ladder of a jungle gym and felt my heart sink. She will do that, but not with her hand as it is now, not yet.
So I'm all mixed up. I'm up as can be and I'm down in the depths. Every time I sit with her and spend a moment on working on her opening and closing her hand, I see how far she's come. She likes to feed me blueberries with righty. I have to lick a squashed piece of fruit out of a questionably clean hand but she is learning to turn her hand up, so I eat the berries and it pleases her. I'm up, and light as air, and Hannah is a joy forever, and I'm dark, and guilty, and not even as guilty as I am mad that she carries these burdens. What should be a normal little MRI and a doubled up dental procedure for her will be a day of general anesthesia for her on Friday (I waited this long so I could keep her at home the day before and not admit her as a precaution to emptying her system of food before a sedative - Hannah will never have easy peasy outpatient surgery) and it literally took something like thirty phone calls and emails to get it scheduled only to have it all nearly dashed when no one wanted to be responsible to move her from one floor of a pediatric hospital to another. But today I heard that the dental suite scheduler pulled some kind of miracle together and I'll be bringing her sweet rolls so my baby doesn't go under twice just because "that isn't the way it's done, ma'am." An office administrator angel in disguise. Perhaps she'll let me sit by her and knit while the dental work gets done.
I wish my camera could do justice to the loveliness of this girl. She has learned so much about how to communicate, I think she doesn't talk much because she doesn't need to, but today she said car and moon on our evening walk. But better still, she can fairly talk with her eyes, her beautiful eyes and joyful smile. When she is awake.
This childhood of my darlings passes so quickly, too quickly. Bittersweet is the right description "more sweet than bitter, bitter than sweet." I want her bigger and stronger and yet to stay so perfectly sized to be held in my arms with her head tucked under my chin. It must cause mothers physical pain when their grown children can't fold up onto them anymore. I don't know how I'll stand it except taking comfort that I got them along in the world that far even when some of the battles were harder fought than was really fair.
Well, we need not have feared what Claire would learn watching Grease and hearing the entire crowd singalong, because the night was scuttled by the contracting of the fifth of classic childhood illnesses diagnosed by a distinctive rash, fifth disease, also know as "slap cheek disease" which sounds a little more like something I'd like to inflict. This is how Claire looked coming home from day care:
Normally Claire looks like this:
As Claire mended, I was felled, then Hannah, who was spotty from head to toe. I actually had one evening where I took to my bed then had the bonus symptom saved for adults, with aching arthritic joints that normally feel quite spry, like hips and elbows. So we lost days of work, days of day care fun, therapy and Little Gym sessions, took a lot of pain meds and fever reducers and generally had an ass kicking time. And a big who-hoo to that week, don't think you'll be getting some whiz bang Friday Haiku, because I have to get ready for an upcoming holiday celebrating the baby turning two. Bite me, stupid week. Wait, is that begging for trouble? Let's agree to detente, shall we? It's just a flesh wound and we'll call it a draw.
Mother of two, step-mom to two more. Married. Work in the theatre of the absurd, behind the curtain, and pulling the strings. First daughter was a preemie, new Baby has MCADD, or Medium Chain Acyl-CoA Dehydrogenase Deficiency (Mighty Crappy Aggravating Disorder) and mild Cerebral Palsy, because the fun never stops around here. Foggy mind. If I wore a button it would say: Lose mind now, Ask me how! Things you might find here: bits and pieces of fluff about babies with wacky disorders, mommying, knitting very slowly, and stuff I don't say at work. If you want to send me free stuff just email me at gingerbblog at gmail.
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