So yesterday I had my daughter's hippotherapy evaluation, for which I paid $175 so four ladies could fit Hannah with the smallest helmet they have (ump-de-ump times, since her head is so small she needed a lot of pads stuffed in) then pull her screaming from my arms and walk her around the ring on Tulip the pony while Hannah screamed bloody murder at the indignity of it all. All is not lost, however. After the session, she did smile when I asked her about Tulip, and she petted her nose and waved bye-bye. When I asked her about Tulip at home, she gave me a super large Hannah grin, possibly planning her next tantrum.
I think I can do a few things to improve our next session, which is a few weeks away, such as work with her on wearing a helmet, take her to places that do regular pony rides for $10, and let her feed and pet a horse through a fence and so on. But, um, holy shit. Everyone who is into it thinks it is the most effective technique ever developed, and few places will work with a population as young as Hannah, and only the National Ability Center is certified for hippotherapy in my state, so their prices are higher. But it is odd to pay that much to make your baby scream. I can do that for free, you know. I am highly qualified if not actually certified. The benefits my PT (the one I love, who got Hannah to crawl against the odds) wants her on a horse for development of the muscles of her trunk, and the OTs want her on a horse to benefit her use of her hand and along the way get self esteem, speech development, and a sense of accomplishment. But $3000 plus for this year, and a half hour drive each way?? I will do it, I am sure, as this time of zero to three will never be available to us again, with extra neurons just floating about waiting to get used, and a plastic little brain just itching to be rewired. But OW. Someone please tell me how full of the awesome hippotherapy is. Please.
Now, AFOs - those of you not in the special needs community - this means ankle foot orthosis. Ours is a just above the ankle sized boot, and it makes her foot bigger enough that she cannot wear regular shoes. Shriners gave us some Skecher type shoes that are like Frankenbaby shoes. I cannot bend the soles with my hands, I don't know how her skinny wee legs could possibly make her shoes flex and I can't believe anyone - hemiplegic or not - would walk better with feet that don't bend anywhere. I bought some expensive baby sandals from the expensive baby store, and they can adjust enough to cover the boot and give her a soft flexy sole but is there another option? What about in cold weather? Help? Ideas?
See her casually push a toy to the play kitchen using two hands, then get ready make some play soup? That's my girl. And more proof she is my girl: when she cooks pretend soup, she slurps some out of the ladle to sample it while cooking.
Hannah has been taking a few steps at a time for weeks, but she just doesn't stop well. I've been trying to post a video of her walking at Shriner's therapy using a walking toy to support herself a couple weeks ago, but something about that video just fails to upload. so instead, I give you her at school today, when she walked to one of her teachers while I videoed the event.
We took my girls to see my sister graduate with her doctorate of nursing practice. Claire sat on my niece's lap for awhile during the ceremony, then turned around and said "Is this important?"
Hannah is so close to walking that you could call her a walker, but what she doesn't do well is stop. When she gets this piece down I will post videos to you heart's content.
My daughter has become addicted to the Tom Petty song "The Waiting" and makes me play it over and over. Her dad gets fed up and won't do it but I generally will because I still experience the joy of doing that myself. I just uploaded a bunch of my old CD into iTunes so I have 350+ "new" old songs I have loved for years on the iPod. When I cam across the Smiths "Ask" today I had to play it three times in a row. The Smiths were one of those bands for whom the lyrics of my favorite songs often bore no relationship to my life bit I liked the sound so much I couldn't stop listening. And in "Panic" they stated it perfectly: because the music that they constantly play, it says nothing to me about my life . . . hang the DJ! hang the DJ! hang the DJ!
My day began in an OK fashion and ended with me vomiting out the door of my car on my way to pick up the kids, presumably from the virus one of my stepsons had last week and brought home or possibly from food poisoning from a top ramen noodle thing I ate for lunch. Not that I am done both shivering, aching in inexplicable places, and sweating as if I were exercising, and now that I have many medications and 16 ounces of liquid taken in very small doses on board, I am going to bed.
I realize this stream of consciousness post bore less resemblance to a jet stream and more to an El Nino pattern, but it is all I had in me, given that one of my eyes is closing in a neurological fit of disgust with the state of affairs, and that I am only sitting up to increase the odds of my test food staying down. I will now leave the land of the semi vertical with a stock pot in bed for deposits should they be necessary, and just try lying all the way down to hope for the best.
I can't believe how far I've come, to let things go this far downhill, but I can't take it anymore, and I am now formally and fully committing myself to losing weight and getting more fit. Will I be thin, in the end? Probably not. But it would be nice to match my miniature people somewhat. And I clearly need to reduce in size to be able to adequately chase Claire, or take Hannah down a slide in the guise of therapy. I think if I had not had to move about helping Hannah get mobile I would have been able to ignore this state of affairs a bit longer, but the strain on my weak neck from crawling about made my neck ache, my head pound, and my middle big and squishy. OK, maybe the middle was already squishy, but anyway . . . The last six months have made it apparent that I simply have to make changes and I really can't afford to wait anymore, for Hannah and Claire and for me. I went back to physical therapy two months ago to work on my neck specifically, and found that PT exercises for necks have changed a lot since right after my neck fusion surgery thirteen years ago. Although I was given exercises to do after my surgery, I did not get the breadth of information that I got this go round. I make faces and blow raspberries at the therapists, just because I can, and when I've had days where I couldn't turn my head to the right I blamed them but soldiered on. I have been faithful about stretching every day, and then working on strengthening my neck and all the supporting muscles of the upper body. For years I have been going to a gym, where I walk on a treadmill or use an elliptical trainer and I always tell myself that I am just getting back into exercise, so I shouldn't or needn't work too hard. I have been playing this mind game now since before Claire was born, and the upshot is that I barely sweat at all when I "work out" because I've really not been working very hard. So, last week, I saw a Jazzercise sign out in front of a community enter near me. I went to Jazzercise three to six times a week for about ten years, and although I wasn't thin, at least I was fit-ish, and my neck really caused me very little pain, unless I raked too many leaves, or paddled too hard on a river trip, or did something one sided or extreme. I called the number, got the schedule and this week I went back to Jazzercise. As I huffed and puffed my way through the first class on Wednesday I shed a few tears of joy to be back. I'm certain no one saw the tears through the sweat that soaked my face. I have not exercised hard enough to sweat into my eyes like that in going on five years. I went back on Friday, and today, and signed up for the whole summer. And right now I can barely move. I am pounding pills, taking fish oil and cal-mag, doubling up on vitamins and tonight I am going to bed kinda early and considering a massage for tomorrow. I had no idea my lower back was so weak, and adductors? I guess I haven't had much call to lift my leg sideways lately. So now I can't stick out a hip to park a child on it, without pulling on twenty different sore muscles. I keep thinking of that Far Side cartoon, where the cowboy is all shot full of arrows and says "Yeah it hurts Jeb, but it's a good hurt." This, by the way, is a joke that will not translate to your physical therapist if she is from Ukraine and did not grow up getting a Far Side book every Christmas. If I get through the next week then I am home free. But did all ya'll know there are muscles in your ribcage that seem to connect to both your hips and your neck? This baffles me. Maybe there is a supplement for that.
My sister made a point to tell me Happy Day for Claire's birthday, and told me she always feels extra special on her kids' birthdays. I felt special but sort of bitchslapped too, so much so that I ended up crying at the bakery when I picked up Claire's fancy cake for the family party. I thought of how I'd brought home a cake from that bakery when Claire got home from the hospital, and how much bigger it was than her tiny wee head, and how addicted I became to that buttercream frosting, making her at least %25 butter for the next two months when I stayed home with her, trying to fatten her up.
It had already hit me some on Saturday, with her party coming up and me racing around doing party prep errands on a sunny spring day, high on my SECOND Starbucks Venti Caramel Macchiato, blaring Tom Petty in my minivan, and feeling the love. Jason had said something like "I wish I'd gotten this much when I was a kid" and I said yes you do, everyone should be so lucky to be as loved and cared for as my dear girl. It all came together in some weird "I won't forget this moment" sort of way, with the pleasure of giving her a great time and making her feel cherished and important, and the sun was shining and then came the juxtaposition of some of my old punk rock playing on the iPod, followed by Tom Petty with me screeching along with "oh baby don't it feel like heaven right now, don't it feel like something from a dream?" Yes! It is heaven! I get this lovely creature to spoil and fawn over and cradle in my arms, and then I remembered how I almost didn't get her at all. Once it hit me I couldn't let it go - how close I came to not getting to have heaven on earth. My doctors had no idea my baby was struggling, since I measured normally and the heartbeat was strong, but she is only alive because I asked for that extra test, just because I felt that I didn't feel enough movement. As soon as they slapped an ultrasound on me it was apparent the baby was not growing and needed to come out and be fed. When I asked how they could have just been willing to let me go home from the clinic that day, and what would have happened had I not sought extra testing, the doctor looked me straight in the eye and said "stillbirth."
I am normally a glass half full kind of gal. My glass has pretty well stayed on the full side except when it comes to motherhood. I should be able to just revel in the result, because the results I have are indeed astounding and glorious. Not for nothing did I make up a song like "Claire the Magnificent" to croon to her at night. Something about motherhood brings out the naked part of my soul. Any of you read the Narnia books as a child? When a character who has done wrong, really wrong, meets the Powers That Be and the all powerful Aslan rips through the extra bits right down to his soul, all naked and slippery? That is about how this motherhood gig goes. I am tooling along with just the joy, on a sunny day, in my minivan, and smack here comes the other side of it all, the fear and the worry and the oh-shit feelings. My people tell me how wonderful I am to have noticed and taken action, and saved the day for Claire, but it doesn't always look that way inside my head, through the PTSD. They tell me this too in relation to Hannah, that I noticed the signs of her CP before her doctors, before her father, and jumped on the therapy bandwagon at the first possible moment. I keep remembering how shocked I was that there was a problem for either of my kids, how inexplicable it all seemed, how close I came to not getting that first baby at all, let alone the second. I think sometimes how if I had not planned to breastfeed my second baby, despite all the motherfucking pumping and hassle with feeding Claire, in fact probably because how hard that all was I was determined to breastfeed baby number two and get it right, but if I had chosen to just formula feed, Hannah might not have CP at all, because she would never have dipped too low in calories learning how to nurse. Am I a good mother? Well, of course I am, but on the inside, I doubt, I wonder, and I feel guilty as hell. And then here comes that joy again, when I snuzzle them on the backs of their necks.
Twice this week total strangers asked me for advice about the big parts of motherhood, how to pick a day care and whether to use a day care for a medically fragile child. My name gets given out as an example of someone in the know. Fuckity, fuck, fuck I say! I don't know anything!! Of course I give advice but still, on the inside, I am full of self doubt. I keep wondering if I'll get caught faking.
Claire now has a new favorite song, because we played The Waiting for her on the way to the party. And now the poor girl at Mrs. Backer's bakery thinks I am insane since when I ask her to prepare a cake for us, I find myself telling her why I have to have a Mrs. Backer's cake on the actual birthday even though Claire would be happy with a Costco cake or even one of lesser quality, but I must have the buttercream icing that says "Claire came home" to me, and always will.
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.