The Story of Taryn

You like Thomas the Train, who you call "Thomas a choo choo twain!" And Veggie Tales (or "Tijjie Tales!") is a pretty close favorite. Although all bets are off when it comes to Scooby Doo (better known as "Dooby Cobby!").

You're silly and sweet. You're rough and tough. You're a bundle of contrasts and everything I never thought I'd have.

Your name is Taryn Michael. In eleven days you will be two years old.

So much has happened in your life in the twelve months since your last birthday.

You learned to walk. You learned to talk. You learned to drink from a big boy cup, to eat with a spoon, to get your point across, to make choices. You got glasses. You broke one pair and lost the other. You're learning to be you.

You moved from Minnesota to Florida, from one Florida town to another. You went from having your own room to sharing one. You went from being unable to participate in much of anything, to the instigator.

I called the day you learned to walk an ordinary, every day miracle, because thousands, millions of other families all over the world were watching children right around your age do the same thing for the first time, and yet it was amazing given what we'd gone through with your brother.

As I sit here tonight, I find that I was, somewhat, wrong.

That day was not an ordinary, every day miracle.

YOU are an ordinary, every day miracle.

You are amazing. I don't recall teaching you to use a spoon, yet you do. I don't recall teaching you to get dressed on your own, yet you can. I don't think I ever showed you where the garbage was, yet you're capable of throwing away your own garbage. I didn't have to take you to therapy to get you to walk and talk, yet you do both, picked it up all on your own. Just like millions of other children all over the world.

And it is amazing. It's a miracle, the miracle of childhood unfolding as it "should," as it is "expected," as is "typical."

You were born to a mother who can't always give you the experience the baby of the family usually gets, who can't always make you the top priority because 9 times out of 10 your brother needs to be. You were born with a big brother who will forever need more than you will. You were born to parents who had never experienced typical.

And I'm telling you, you are a miracle. For all the fuss made over your brother, you are AMAZING. You are...miraculous. Incredible. Astonishing.

The story of your life started on a September morning when I threw up cooking eggs. You are the author of where the rest of your story goes. YOU. Not me. Not a regiment of doctors, therapists, social workers, and home health aides who will guide, mold, shape, and ultimately help decide your brother's future.

YOU.

The story of you is about to be two years old, and we're getting to the part where you start to play a more prominent role in what happens to you.

I can't wait to see what the next chapter brings.

The Aftermath

"I want to die Mommy. I don't want to live. I hate my life."

Quite possibly the worst words any parent will ever hear from their teenager.

Except my kid isn't even four yet. And I've heard them several times a day every day since Tuesday.

This is not my child.

My child is happy. Hyper. Funny. Bouncy. Resilient.

The little boy who woke up in the hospital after surgery bounces between what my child is...and this depressed, despondent creature who won't get out of bed without force. It took four hours to get him out of bed this morning, and it had nothing to do with the cumbersome casts encasing his legs.

It had everything to do with him not wanting to be looked at, touched, spoken to, etc.

I get that this is a normal phase for anyone to go to after a life-altering surgery like he just had. He went from being able to get up and run about and go potty all by himself to being stuck in casts and a wheelchair, depending on Mommy and Aunty to take him to the bathroom and get him in and out of bed. His independence is gone, which is hard for an independently minded person to deal with, especially when that person is also autistic and depends on everything always being as close to the same as possible. I get that that is hard to deal with.

How does that translate to my not even four year old wanting to die? Where did he even learn to feel like that? Those aren't words we use in this house. Where on earth did he learn that?

To say that I'm horrified and worried is an understatement of vast proportions. I don't know how to make him feel better.

Yesterday (Easter Sunday here in the US), I took him to church for the first time since he got his casts. He was so excited to get to see his friends. Until we got there. Until people gave him strange, pitying looks. Until the kids wouldn't look at him. Then he cried and begged to go into the church with me. Where he cried and cried and cried because people looked at him sadly and asked what he did to his legs, which led to the explanation that he didn't do anything-biology did. Then we went to my parents house for Easter lunch. Where people pitied him and went out of their way to be nice. Which drove him crazy.

Kai doesn't like to be pitied. Most likely because he's never been raised to be pitied; I don't believe in it. He's shown that he's willing to learn to do as much as he can, so he will. There are times he complains that he can't do something because his legs hurt or his hands won't work. I make him show me that he can't before I'll help him. I want him to be independent, and he is. And perhaps I shouldn't have done that, knowing what the future held for him. Knowing that he would, at the least temporarily, be confined to a wheelchair, maybe I shouldn't have taught him to do so much for himself. Maybe I should have waited to instill that independence until after it was all over with. I don't know. I did what I thought was more beneficial to him at the time.

I thought I prepared him for this surgery, for the reality that is his for the next few months or longer. We watched videos of his surgery, talked to the doctor, read books, even looked at wheelchairs and explained that he'd be in one for a while because of his casts. I thought I'd done the best job I could of preparing him for this. It looks like I was wrong. He's in pain a great deal of the time. His sensory issues are going nuts from the casts. Every sense of independence I've instilled in him over the last almost four years has been shredded completely. He is once more at the mercy of those who care for him.

The hospital was awful for him. We were only supposed to be in there until Wednesday morning. I had to raise holy hell just to get us out of there...at 1:00 Friday morning. Middle of the night. "Oh we can't let you go because you don't know how to do his infusions." I call bullshit. I've done them since he was six months old. "Oh. Well we're waiting on his wheelchair." Which can be delivered to our house. Next excuse. "Oh. Well, we have to wait for administration." In that case, you have ten minutes. If your administration hasn't signed off on letting my child leave in ten minutes, I'm leaving with him whether you like it or not.

He wouldn't eat. He wouldn't drink. He wouldn't talk. He wouldn't do anything but lay there. The only time he was even close to normal was in the play room. And then he screamed and cried when we had to leave the play room so he could have his medicine (Nemour's policy-if they're in the play room, there is no medical anything. The kids are to be allowed to be kids in the play rooms). He doesn't understand that his casts can't come off, so he begs and pleads to have them taken off. He is terrified of anything going into his IV, so he fights anytime he has to get his medications. We're three days home from the hospital and I still can't get him to eat. He still won't play like he used to. He still doesn't want to be around people. Except his buddy Leo. He'll play with Leo for a while. He full on kicked Taryn in the face, so hard Taryn has a completely black and blue face on the left side. Just because Taryn wanted to lay in his bed with him.

I'm on the verge of doing the only thing I know to do-putting him back in the hospital. Where they couldn't draw him out of his shell anymore than I could. But I don't know what else to do. This can't go on. He HAS to eat. He has to get out of bed. He has to get back to his life. This isn't forever, although I know for him it seems like it is. My poor boy.

I'm sorry, baby.

Joining the Mom Club No One Wants to Join

Okay, so the mom club no one wants to join...well, there's a few of them. The one I just joined?

The Club of Moms Whose Children Basically Live in the Hospital.

Now, there are separate sections to this club. The particular section I just joined, we'll call "The Depressed Non-cooperative Patient Child Chapter of MWCBLH."

Kai pulled through surgery beautifully. His surgeon and anesthesiologist and nurses and all the other staff present in that OR yesterday were wonderful. He was given a teddy bear, allowed to take it and his beloved Tow Mater pillow in with him, I went back with him, he was given a sedative before they started his IV, then he got his IV, his Factor VIII and Humate P, his strawberry scented anesthesia...had a panic attack over the mask being on his face, and then I went to the waiting room to begin the...well...waiting game. When the surgeon came out to tell me he was fine and it was all over, my mom had to hold me up. Then I waited another agonizing hour to go hold my little boy.

I'm not sure what was more horrifying-witnessing his panic attack and choking on air during anesthesia, or the screaming wreck of my precious baby I found when they brought me back to the recovery room.

He wouldn't talk. He wouldn't look at me. He simply launched himself at me as best he could with his little legs all covered in bright yellow casts and screamed his head off. I couldn't put him down. Nothing we did made him feel better. It took hours to calm him back to himself again.

And then I thought he'd be okay.

And then five o'clock this morning rolled around.

I was sound asleep on the couch in his room when I was woken by the nurse telling me he'd had an accident in his sleep. I lay there for a bit until she moved him...and the screaming started again. Meltdown, classic autism mode again. Vitals showed a fever, and he wouldn't eat or drink anything. All the progress he'd made...gone. It's nearly one in the afternoon and I've gotten him to eat a single banana and take four ounces of juice. He still won't look at me. He's despondent. He doesn't want to talk. He doesn't want to be touched but he won't let me put him down. He doesn't want to be outside, his favorite place ever. He had no interest in the fish aquarium on the bottom floor. He doesn't want to play.

This is not my baby.

I want my baby back.

Twas the night before surgery

'Twas the night before surgery, and all through the house, not a creature was stirring...except for your mom.

I keep trying to clean the house before we have to leave in just over four hours. I started to pack a bag. I've tried to organize and remember everything that we'll need, and I can't do it.

I get so far, and then I have to stop.

I am terrified of what is about to come. I cannot even begin to imagine what's going through your mind. Do you understand what's about to happen to you? Do you know what Mommy gave consent for the doctors to do? I know we've talked about it, but do you understand? You, with no concept of time-do you understand what we've been going on about for months now, and what will come in the months ahead? You, with the blank look on your face-have you heard a word we've said? Or were you off in your own world, where it makes perfect sense to sing me a theme song in response to a question?

I remember when you were born. The mad last-minute dash to the hospital when your father and grandmother realized what was happening to your mommy...the terror because I knew something was wrong...the anger over how wrong it all went...and then your sweet little face. I remember checking all ten fingers and all ten toes and asking the doctor "Why do his feet look like that?" "It's just positional-he's a preemie, it'll fix itself."

Part of what I feel tonight is nothing but sheer anger, rage at that doctor. Had he done his job right four years ago...had he x-rayed your feet as he should have done...had he sent you to a specialist immediately instead of letting two young, inexperienced parents bring their child home with no further instructions than "Let's see him back in two weeks for a weight check," how different might it all have been? Would I be sitting here tonight, terrified of what tomorrow might bring? Would you be in your room asleep, aware and yet simultaneously oblivious to what is about to happen to you? Would this have happened long ago and be nothing but a bad memory I hope never to repeat?

So many things were messed up for you. So many mistakes made...so many things gone wrong...I failed you in that sense. I knew. I knew when you were born that this wasn't right, that there was something wrong, and yet I sat back and let doctors who surely knew more than I did run what was going to happen to you. Today, that would never fly with me-today, hell would have frozen over about six times before I took that first doctor's words to heart. I would have demanded that you be examined by a competent doctor who knew a little something about an infants feet. Four years ago...I was a frightened 20 year old who just wanted her premature newborn to be healthy. I denied and denied and denied what I KNEW in my heart and in the back of my mind was the truth.

And I failed you.

Today, I fight for you. I fight for you because you are my son and I love you. I adore you. I fight for you because you cannot yet fight for yourself.

I also fight for you because I failed you so miserably. I fight to fix what I allowed to go wrong, to go unchecked, untreated. I fight to fix the mistakes I'll never forgive myself for.

People tell me all the time "Everything happens for a reason" or "God knows what he's doing." I should hope God knows what he's doing, or we're all in trouble. Yes, everything happens for a reason. Neither of those statements make me feel a bit better for what I failed to do. Neither of those statements will save you from what is about to happen. Neither statement will save you if something goes wrong tomorrow.

"Relax, this is a common procedure for children like him. The risk is minimal." Until you add in your blood disorder. Until you add in your seizure disorder. Until you add in your asthma. Until...until...until. You are a walking medical nightmare. The risk is minimal for a "normal," healthy child. You are considered to be neither one. The risk for you is much higher.

Granted, the risk that the person who has to come tell your mother something went wrong will be themselves in need of a doctor is also that much higher.

I don't know why everything failed for you four years ago, and again two years ago when the first scheduled surgery for your feet fell through. I don't know what calamity you may have been saved from. I don't know what happened instead that might not have happened had things gone the way they should have gone. The only thing I know is that I failed you then. The doctors failed you. You fell through the cracks and went untreated far longer than I should have allowed. (I should have allowed not at all...)

You have my word-that is the final failure. I fought like hell to make sure your surgery happens tomorrow. Your doctors bent over backwards this time to get the ball rolling and make sure everything was green light. Never again will I allow you to fall through the cracks.

I am so sorry this didn't happen sooner. I am so sorry that I failed you, that the doctors failed you. I am so beyond sorry that there is no possible way you won't remember this. I just hope you forgive me.

I love you moon back to pizza and all the pepperonis, my little baby blue. Golden lights, my love.

Button the Bunny: Differences

Every parent who raises more than one child will recognize differences between Child A and Child B. Child A slept better at night, but Child B was sick less often. Child A prefers to be left to their own devices, while Child B wants constant companionship. Child A doesn't like peas, while Child B loves them. So on and so forth.

Now let's turn the tables a little.

The parents bring Child A home from the hospital. Child A was premature, so they expect delays. They do not expect Child A to still not be sleeping through the night at four years old. They do not expect that Child A will not crawl anywhere even close to on time. They do not understand why Child A will not play, or look at them, or respond to their voices, or follow directions, or walk. They expected Child A would do things just a little behind other children the same age. They did not expect to have rounds of tests and diagnostics and appointments to find out why Child A was not doing what Child A was "supposed" to do.

Then the parents bring home Child B. Child B was full-term. Child B sleeps through the night from birth. Child B crawled ahead of schedule, spoke in full sentences ahead of schedule, loves to play, knows their voices, follows directions, walked on time, and did everything they could not get Child A to do. This goes beyond the "expected" differences between siblings.

This is the life of a family whose first-born child is disabled. Every day, I am reminded more and more of how my son's are different.

I'm not going to lie.

I'm not going to tell you we celebrate all their differences. We don't. I don't stand up and cheer every time Byrd uses a spoon, and throw a party when Kai reads a book even though he still hasn't mastered eating with something that isn't his fingers. I encourage them to be themselves, certainly, but I see little point in celebrating these types of differences.

What prompts this? Well, two things: one, my irritation with friends and family who don't grasp that there is little to celebrate about my child's inability to do what his friends and younger brother can do, and two, my children's differences were at an all time high today.

Kai has no imagination. The world confuses him. I asked him today "What's your name?" And he told me all about his doctor appointment. "Yes honey, I know. I was there. Can you tell me what your name is?" And he proceeded to tell me all about his toy boats. "That's great, honey. That still doesn't answer my question. Can you tell me what your name is?" See, we've been working on teaching him his whole name just in case something happens. I spent half an hour on this today-asking him his name just to have him regale me with stories of his day...all of which I knew, because I was there.

Now, from my child who will be two a month from now, I got the following response: "Baby, what's your name?" "Tawyn Michael." That was it. Took less than a minute. (He knows his last name too, for the record.) I dug through my memory box today, too, and found an old stuffed rabbit. Byrd saw it and wanted it. "What will you name him?" "Button!" So. Wren gained a new friend-Button the stuffed rabbit. Kai found a rabbit in the Easter decorations that he wanted. "What will you name him?" "I'm not going to name him, Mom. He's a toy." Kai carried his toy (which, incidentally, he finally agreed to call...Button) with him. Wren insisted on Mommy sewing up a hole in his Button's foot, giving Button hugs and kisses good night, tucking Button in, giving Button a cupcup with Taryn, and singing a song for Button too. I went to check on my sleeping boys, and Kai's Button was tossed carelessly to the floor.

Taryn's is snuggled up with my sleeping baby, held tight by a child for the first time in over twenty years.

I try not to think about all the things that are "different" about my precious first-born son. Sometimes, though, they are so glaringly obvious (to me, at least) that I can't help but feel an ache in my heart.

Taryn and Button the Bunny

To my autistic son for Autism Awareness Month/Day

My baby,

They say autism affects 1 in 68 kids. One in 42 of those kids are boys.

You won the lottery, kid. You are my special 1 in 42.

You are considered high functioning. I hate that phrase. It sounds like someone's trying to sell me a new computer that still runs on Windows 95.

You straddle a line between two worlds: your world, where sounds and smells and tastes and sights and people and crowds are too much for you, and the world your brother inhabits, where you're expected to deal with it by people who don't understand. They see a little boy who can talk and seems friendly and don't see past it to what's in your mind. They don't see how hard you work every day to "fit in," how you fall apart when we're in the car because it was too much to expect from such a little boy for whom even the sound of the car door shutting is too loud.

They look at you and they think "Brat. Spoiled. Overly indulged." if they have the misfortune of watching you fall apart. If they've caught you on a good day, they think "Intelligent, but 'normal.'" They don't see what I see.

I see a fighter. I see a ball of energy rolled into one little boy. I see a little boy who had the odds stacked against him for so many things, and showed them all what the odds meant: exactly nothing. I see green eyes that look so much like mine, and dark brown hair that curls when we let it grow and makes you look so big when we cut it off, and a smile that lights up my world.

I see the little baby they laid in my arms the day you were born, and the handsome two year old who toddled into my kitchen for a cookie the day they took his casts off-the first time you ever walked, even when they swore you wouldn't, all because you wanted that cookie.

I see my saving grace.

You are beautiful in every way. Even on your bad days, I still, at some point in the day, thank God that you are mine.

I love you moon back to pizza, baby boy, and I will fight your fight with you until all the pieces fit.

~Mommy