Archive for March, 2009
Every once in awhile, there are those days where I get a glimpse of how life with a typical child would be. It’s like being on another planet, really, and Husband and I raise our eyebrows at each other repeatedly throughout the evening as if to say, “Who is this child and what has he done with OUR child?” C stays on topic, asks how my day was (!), and says things that seem so darn normal, I hardly know how to respond. It’s always interesting, but I’m sure after awhile I’d be completely bored. While it lasts, however, it’s pretty entertaining.
Yet C capped off the evening with something so astounding that I feel as though he’s going through a real growth spurt. After C had a bit of a tantrum at bedtime, Husband and I said goodnight to him without the schmoopiness we usually provide. A few minutes later, after C had calmed down and started his evening chat with his stuffed animals, I went back into his room to give him a kiss. “I’m really sorry for how I behaved, Mommy. I was just really mad,” he said.
I’m pretty sure I wouldn’t appreciate or treasure these moments nearly as much if they happened all the time. As it is, I will remember this unscripted, unprompted, and completely empathetic sentence – most likely forever. In the way that only these very special children can do, C managed to bring me hope, joy, and wonder all with only a few words.
I have a picture on my bulletin board of a kid sitting at a high chair with spaghetti covering much of his head, face, and arms. This is my inspiration. C’s first feeding therapist told me if we ever got him to go as far as to smear food in his hair, we’d be done with her. I’ve sort of given up on the spaghetti in the hair fantasy, but I’d settle for C’s eating spaghetti with sauce (instead of shaped pasta dipped into ketchup – we couldn’t possibly put the ketchup on top of the pasta, of course).
Still, I’ve long had visions of C wearing birthday cake like most one year olds do on their first birthdays. Yet even on his first birthday, C didn’t touch cake, and he definitely didn’t eat it. It was no different on his 8th birthday, where he actually requested cupcakes like the other kids would have. I found gluten free, casein free, egg free cupcakes with frosting, and surprisingly, they didn’t taste like cardboard. He still wouldn’t eat them at his party, but he did blow out the candles. The next day, however, without the audience of 15 of his friends, he decided to try the cupcake…and proceeded to eat the whole thing.
I think 8 is going to be a very big year.
As I reflect on the last eight years, I am astounded at both the long road behind us and the longer one in front of us. We’ve come through things I would never have imagined we could face, and I wonder what waits ahead.
Eight years ago today, I was on bed-rest, drinking as much water as I could to help replenish low amniotic fluid. Over the next 72 hours my life would change in an even more dramatic way than I could have ever contemplated. I am thankful I didn’t know what was coming. I went to my OB’s office the morning of the 28th of March to do yet another ultrasound to check the fluid level. I wasn’t scheduled for a c-section until April 10th, two days before Husband’s birthday and two days after my own. We hand-picked that date after an immovable breached baby dictated a c-section was necessary. In our remote town, far off the grid, they scheduled c-sections instead of waiting for labor to commence. Upon looking at the ultrasound results, my doctor sent me to the hospital for an immediate c-section, as the amniotic fluid level was dangerously low. What we didn’t know at the time was that there was also a blood clot in the umbilical cord and the placenta was deteriorating rapidly.
I remember little about C’s delivery - only bits and pieces of things here and there. I don’t remember even seeing C after he was born, as he was taken away almost immediately and put on a respirator. Even then I didn’t realize the gravity of the situation. Whether it was the anesthesia or denial, I’m not sure, but I wasn’t particularly worried.
I didn’t see C until he was almost two days old. The first night, I stayed up all night, jittery from the anesthesia drugs, and still not comprehending what was happening. My next vivid memory was a day later – of the nurse rushing into our room at 2 in the morning, asking permission to perform surgery and insert a chest tube. C’s lung had collapsed, she said, and they had to save him. That’s when it hit me. This child could die, and die before I would ever even hold him.
C’s breathing didn’t improve with the chest tube, and the decision was made to med-evac him to Denver, where he could be in a Level III NICU facility. The next morning, in the midst of a blizzard, we prepared for his departure. A minister was brought in to bless C as he lay in his little incubator. I couldn’t hold him, but at least I could touch his head, which still sent all the bells and whistles off while his overloaded system processed the touch.
They arranged for Husband to fly down with C, and we anxiously awaited the arrival of the jet. Upon landing, they had to drive an ambulance 20 miles through the storm to reach our hospital. In came the flight nurses, bringing a life saving drug that was only recently approved for use and was only to be used by one hospital in the state. They started C on nitric oxide right away, and his breathing stabilized somewhat. As they wheeled him out in his little space box, all this equipment attached to him taking up more space than the people involved, I was astounded at the life-saving measures they were able to employ. I watched them go, racing down the hall to the waiting ambulance. My eyes met another parent’s eyes through the window into the family lounge, and we connected through that look. Months later, at a “reunion” for NICU babies, he told me he knew something terrible was happening and was praying that it would be okay.
I thought, during the long and worrisome weeks and months that followed, that C would recover from all of this and we would see it as less than it actually turned out to be. That didn’t exactly happen, but frankly, it’s amazing he survived, and when doctors read C’s history and then look at the child standing before them, they declare a miracle. When I look at it from that perspective, C’s journey through life takes on a different tone. This child, this amazing miracle child, is destined for greater things. I have no idea what his future holds, but whatever it is, I’m sure it will be as incredible as his past.
Yes, autism lives here. This is a line up, in order received, of all C’s Thomas videos. The missing ones? The ones he wanted, but didn’t get. In their proper order, of course.
I planned on being one of those moms who never fed her child sugar, bologna or french fries. I’m pretty sure it’s my cosmic karma for saying “never,” that I have a child who had to be coerced into eating each of those things (see here) and have now found myself grateful that C eats at least two of those things. I continue to hope he’ll actually want a cookie someday.
Also on the “never” list included toy guns, and as it turns out, I have a child who scares so easily that he can’t even watch previews and commercials without freaking out and having nightmares. When C first decided he might be interested in guns, I answered his slew of questions as calmly and without judgment as possible. I didn’t want to encourage what was already quickly passing the fear stage and heading into the phobia stage.
One day in the store, C found his way to the Nerf part of the toy section, which features some toy guns. After much consternation, discussion, obsession and thought, which occurred over a period of several months, C decided he might like a Nerf gun because he “couldn’t hurt anyone with that.” Once again reveling in “normalcy,” I reversed my earlier position on no toy guns and purchased a Nerf gun for him for Christmas. It was a definite hit, and now he wants another one.
This seems to have been a good way to get him over his not-so-completely-irrational but completely-overboard-fear (you ASD mommies know what I’m talking about) of guns, and for that I am grateful. He is still very much afraid of guns, but it’s more of a normal fear. Despite the fact that his fascination has lately bordered on the obsessive, to the point of trying to define and categorize each and every type of gun, I know he’ll level out like he always does.
I, of course, being the Mommy that I am, have visions of him getting a gold medal in skeet shooting in some future Olympics. It would probably be my penance to pay for saying “never” on toy guns. But I’ll gladly take that punishment. Bring it on.
Every once in awhile, I am reminded of how challenging it is just to be C. He courageously tackles demons most of the rest of us don’t even consider a threat. To face those fears on a daily basis requires a certain kind of strengh above and beyond the normal.
C’s big fear? Food. It’s all tough for him, from the earliest retching when we’d open the fridge to now swallowing the gag when he looks at unfamiliar foods. If he could just skip eating completely, he’d probably be a much happier kid, but nature calls, and eat he must.
Last week he helped his class win a pizza and ice cream party, and he was probably the most excited of his classmates. Yet he doesn’t eat pizza and ice cream – can’t eat pizza and ice cream, but more telling, doesn’t even want to eat pizza and ice cream. He’s never had cake, pie, pizza, soup, casseroles, or a salad.
The night after the party, when he asked if he could try some ice cream, I jumped on it. He wanted to try the sorbet in the freezer, and I popped out a spoon. Try it he did. What most people won’t understand, however, is the massive aligning of the planets it took to actually get that sorbet in his mouth. No setting down a bowl in front of him. First he had to look at it, and I was careful to cover up the chunks of fruit on one side. He then had to smell it, with my enthusiastically stating how much it smelled like strawberries, his favorite. I got out a spoon, scooped out less than 1/8 of a teaspoon, and slowly glided it into his wide open mouth so as to ensure it didn’t touch his lips.
Then started the reaction. Eyes scrunched shut fighting back tears, jumping up and down, and what I call the “closed-fist hand flap” motion to distract himself. This was followed by his covering his ears. This all took place in the span of the three seconds it took him to swallow the sorbet.
This was a mild reaction, believe it or not. I immediately responded with, “Wasn’t that great? Want more?” Sure enough, he did. Five more spoonfuls, and a request to have it for breakfast the next morning.
Last night was the 2nd grade play at C’s school. As “Bug #21,” he had a speaking part, wings, and a jaunty rainbow bug hat. He’s known the entire play, including everyone else’s speaking part, all the cues, and every song, for weeks. I don’t think anyone had as much fun up there as he did, carrying out his choreographed hip wiggles and claps with perfect precision.
It wasn’t nearly as fun for us as C’s Kindergarten play, where, as a pumpkin, he literally stole the show. Shouting out “HI MOMMY! THERE’S MY MOMMY!!!” (which he also did last night, incidentally) made everyone laugh. Shaking off his headpiece repeatedly and missing the curtain call, leaving him alone and laughing on the stage after everyone else had stepped behind the curtain, he had the audience in hysterics. People stopped me in the halls for days commenting on his performance.
But it was as near a perfect night for C as there could be. Surrounded by people he considers friends, in front of an audience, and with his family watching his every joyful move, he was in his version of heaven. He cried on the way home, insisting he never wanted to leave school again, and could he please sleep in the car???
From C’s writing journal at school, where the teacher gives them the first part of the sentence and they go on from there:
The saddest day of my life was when…I had a very bad dream. Then I woke up.
When I am twenty-one…I will go to Wheel of Fortune alone. I want more money. I will maybe get a car. I might get one million dollars.
A boy or girl who can’t keep a secret…should keep one.
My family is…very nice. My family is very smart. My family knows everything.
A family with no TV…should have one. They may not want one.
A stowaway on a spaceship…is someone that could not go on. They are not allowed on. They don’t go on. They shouldn’t.
A struggling band…is a band who doesn’t work good.
An amateur spy…is someone who is starting to spy.
A foreign exchange student with his/her host family…would be a person that lives with somebody that lives in a different language.
A person shrunk to one-tenth of his/her size…would be boring.
A clerk…gives you money at the store and you buy stuff.
A boy with a magic baseball cap…can turn into anything.
We both ended up in the same section of the bookstore and found ourselves reaching for the same book. Your face was tired and the sadness hung heavily around you as you said to me, “Do you ever look at all those other parents out there and wonder if they know how blessed they are?” As you told me about your son and how he had just been released from the psychiatric ward at Children’s, my comment back to you was that your son was certainly lucky to have you for a Dad.
My heart broke as you told me how challenging things have been for your family, searching for answers and a diagnosis of something no doctor seems to have ever seen. I recognized myself in you as you talked about how worried you are that you and your wife will be hit by a car and die, and then where will your son be?
You thanked me for listening as you left - thanked me for the shoulder and ear. I left too, tears in my eyes having heard what you so clearly needed to say to someone. To be able to pass right into such a personal, intimate conversation so easily, and with immediate understanding, is a gift I think we’ve all been given as parents of special children. I left wondering at the bonds that tie us parents together in our own special tribe, and felt thankful that sometimes we are able to find each other and offer ourselves.