Operation: Overprotective

I am one of "those" moms.

I am one who, no matter how much my children show me what they can and can't do, will always worry. Always have panic attacks and anxiety when they are out of my sight. They'll be grown and have children of their own, and I'll still worry myself sick over them.

I don't do it as much with my little man. I love him to pieces, but the world won't be so cruel to him.

Today was my sweet big boy's first day of daycare/school. I worried all day. I took the day off from work just in case.

He had a blast. He was so good. The only thing I heard all day was "He's upset, and wants his chewie. Can you please bring whatever a chewie is?"

Then we got to the store, and I told him to pick out the backpack I kept forgetting to buy him.

He picked out Hello Kitty. I showed him all the other backpacks. He HAD to have Hello Kitty. I can just see the bullying begin. So I called my mom to tell her how the day went and about his new bag, and my fears over it.

And that conversation brings us to this post.

Yes, I am overprotective of him. He is my world. Him and his brother. But him...he's been through everything with me. I've walked through fire for him. He is my sweet, innocent little boy. I don't want his sweet nature and innocence destroyed anymore than it already has been.

I remember all too well the terror of his first days of life. And yes, he's so much bigger and stronger now. Perhaps it's the perpetual worrier in me that can never fully shake the first moments I held him.

I remember all the things the doctors have told me. And yes, so much of it he's overcome. But I haven't forgotten.

We've been homeless. We've had the shit abused out of us by he-who-shall-not-be-named. (Yes, I am a Harry Potter fan.) We've been broke, flat. He kept me going when nothing else would. He took a broken, frightened, lonely twenty year old and gave her something to live for.

And I don't want to see the light dim in his eyes again. I don't want the hope to go out of him.

I don't want this precious, beautiful little boy to turn into me.

I was broken. I was scared. I hated the world. I don't want that for either of my sons. I see the good in the world, the light in the world, through them. It was something I'd lost so long ago, I thought I'd never find it again.

I'm selfish. I don't want to lose that light again.

So yes, I am overprotective. Is it a bad thing? I don't know. Maybe. I learn to let go a little at a time, and yes, I know I've given him the tools to deal with it if he gets bullied. But no one comes out of bullying wholly unscathed.

He's been through enough.

I don't want that added to the list of things he has to overcome.

Sorry. My bad.

The Look

Dear New Mom,

You don't know me, and if you saw me, you'd probably never realize who I am.

I'm the mom who was pushing her son in the wheelchair through the mall today, the one whose eyes you couldn't meet, whose child you did everything in your power to look away from as you pushed your likely days old baby in a stroller.

I just want you to know-I noticed. I saw the look. And I don't blame you. I'm not angry. I want to reach out to you and calm you.

I've seen that look a million times-when he could walk, but his feet weren't right, when he has a meltdown in the middle of the crowded store, when he drops to the ground, claps his hands over his ears and rocks back and forth, humming to himself to drown out the sensory input he can't handle. I've seen it even more in recent weeks since his surgery and the start of our use of a wheelchair.

It's the look of fear, the look of "Oh God, that could be my child!" Also known as the "Oh thank God that isn't me, that poor mother and child!" look. The look of utter horror and pity mingled.

Do you know the odds of your child turning out like mine? To have all his issues rolled into one child? Astronomical. It's not going to happen, most likely. We hit the jackpot; that doesn't happen often.

The odds of an autistic child? One in sixty-eight.

The odds of a child with cerebral palsy? One in two hundred seventy-eight.

The odds of a club footed child? One in a thousand.

The odds of a child with Von Willebrand's Disease? Only 1% of the population is affected.

The odds of a child with brain damage resulting from loss of oxygen at birth? Again, approximately one in a thousand.

And that's just the main things he has, the "big problems." The odds that your child will turn out like mine? Slim to none. He's pretty unique.

So. Back to The Look. I know it well, and so does he. We talk about that look anytime he sees it. He doesn't like it, but he is slowly beginning to understand why he gets it.

"It's because I'm different, isn't it, Mom?" he asked me today.

"Yes, it is because you're special."

I hate that he knows that look. I hate that he understands what it means. But I don't begrudge you your fear. I don't begrudge you that look, that inability to look at him, as you say a silent prayer that whatever happened to my son (for how could you, a stranger, possibly know?) doesn't happen to your peacefully sleeping infant child. I was you, once. Before all this, before we knew, before all holy hell broke loose in my life. I was you, the one who thought it would never happen to me, until it did.

I just want to reassure you, even though it did happen to me and my son, it's not likely to happen to you and your child.

Peace in your heart, Mama; enjoy your baby. He'll be fine.

Me

The most beautiful thing I've ever seen

Today was the day. Your icky casts came off at last. You could hardly sleep last night, you were so excited. We bought you brand new Ninja Turtles tennis shoes to wear, to celebrate the end of this leg of your journey. We brought your brother to great grandma's house, and you and I went to Nemour's. You were so excited all the way there. You announced to all the cars that passed us and all the people we saw that you were finally getting your casts off.

The techs came into the room with the saw, and noise cancelling headphones for you. You played the handheld, computerized Yahtzee game great grandma sent with you, and they began the process of taking off your casts. I concentrated on you and refused to look until both casts were off.

And then they were.

And then I looked.

I never knew feet could be beautiful. For the first time in your life, your feet were straight. Your toes pointed straight up to the ceiling. They were covered in pus, and peeling skin, and dried blood under the bandages, and metal sticking slightly out of the bottom of one foot, and they were the most beautiful feet I had ever seen. 

I cried. 

There is nerve damage in one foot, and no telling when you'll walk again, but your feet are straight, and they are beautiful.

We got home, and I put you in the tub for your first proper bath that didn't involve a bucket and a sponge in two months. When I pulled you out, I got my first look at the scars you are left with. You hate them. 

"I'm ugly, Mom." 

Oh my darling. No you're not. I pray one day you read this blog, or my FB which turned into an unintentional Mommy diary, so you can see these scars through the eyes of the person who loves you the most: your scars tell a story.

I look at those scars, and what I see is my beautiful blue baby boy on the day he was born, and the strength he showed me even then. I see a little boy who fought against the odds and won, who wasn't supposed to walk but did, who wasn't supposed to talk but does. I see a fighter, a little boy who doesn't know the meaning of the words "you can't" and who doesn't believe in "you will never." 

I pray one day you see this, see your journey through the eyes of your mother, and that you are able to look at yourself in the mirror and say "I am wonderful. I am perfect. My scars are not ugly-they tell the story of the fight I fought that most of my friends will never know." I hope you are able to look at anyone who makes fun of you (and my darling, I'm so sorry-I know there will be someone somewhere who will, it's sadly inevitable) for your scars, and tell them "This is my journey. You didn't live it, and you do not understand it, but I am proud of the fighting spirit these scars represent."

Even if you aren't, I am. 

You are amazing, sweet boy. I don't deserve you, but I have you, and I thank whatever lucky stars aligned to have that happen.

You are the most beautiful thing I have ever seen.

Bad day, so here ya go

Autism means...

You know your letters, but not your ABC's.

You can take apart my laptop, but you can't turn on your toy computer.

You can successfully give me the history of roller skating in the 1920's, but you can't skate.

You can spell your name, but you can't hold the pen to write it down.

You can quote whole movies, but you can't tie your shoes.

Autism means....

You don't understand the differences between emotions, but you can finally give snuggles.

You are terrified of Big Bird, but you'll put up with him to make your little brother happy.

You don't like change, but you're learning to deal with it.

Your words came later, but they mean so much more.

You don't do things the way you are expected to, but you do them anyways.

Autism means...

You are different, and different is good.

You know you are different, and you don't like it.

You don't like it, but you learn to handle it.

You learn to handle it, and you smile while you do.

You smile, and my whole world lights up.

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.