Murphy's Law-Because Of Course...

Sweet little K turned four on Saturday. As most parents in the developed world can tell you, a birthday means a well-child doctor appointment. K had his today.

Hearing test: Passed.

Weight: Gained.

Height: Gained an inch.

Vision: Pa-failed? Wait, what?

Yup, K failed his vision test. He now has an eye appointment on August 13. Looks like he needs glasses.

Because of course there can't be one single inch of him not affected in some way by some medical calamity.

How on earth is this child still functioning!? 

Forrest Gump Lied

Life is nothing like a box of chocolates, folks.

Chocolate is a snack, a treat used to bribe small children and romance your partner. Full of sugar and sometimes caramel.

Life is a crazy, never-ending, all over the rails ride. Things go very, very well, and then they go horribly wrong. Sometimes, life seems to coast along at an almost (dare I say it?) normal pace-nothing out of the ordinary occurs, everything goes according to plan, etc. Life, for everyone, is full of a combination of those times and many more that I don't have the time to classify.

It's nothing like a box of chocolates.

One day, we're coasting along-doctor appointments, work, school, life in general-and all is going as it has for months. The next day, I'm racing to the hospital in the middle of the night, my four year old in the front seat next to me, not breathing. Two days later, he's home again, as if it never happened.

He'd had a seizure, which brought on an asthma attack, which depleted his oxygen levels, which caused another seizure, which closed off his airways, and at some point pneumonia decided to rear its ugly head.

And two days later he was fine again.

So, we're back to coasting along. And everything is going as it should. And life is grand.

And then Byrd is diagnosed with epilepsy. And my world comes to a screeching halt again. Now, I am stumbling through the process once again-why is this happening? Is there something else wrong with him? What do you mean, you don't accept his insurance? His insurance told us to come to you!

And yet he is still Byrd, still happy, still silly, still unbelievably cute. But now I know, when he stares off into space and nothing short of an earthquake (and maybe not even that) will get his attention, he's not simply lost in his own world-the network of nerves in his head is malfunctioning.

If life is a box of chocolates, then I guess I now understand why I never liked chocolate to start with.

Murphy's Law Revisited

Yesterday, I dropped a perfectly healthy little boy off at school. My neighbor picked a perfectly healthy little boy up from school while I was at work. I picked up a perfectly healthy little boy from my neighbor late last night.

At one in the morning, I found myself rushing a not so perfectly healthy little boy to the ER.

I had tucked them in last night around 11:30 after I got home. K was still awake when I checked on them about an hour later. He was fine. No cough. No congestion. No fever. No sign that anything was wrong.

I was playing Candy Crush at around one a.m. when I heard what sounded like K gasping for air. At first, I thought he was playing. (Believe it or not, he's done that.) Until I walked into his room and watched his eyes roll back into his head, vomit everywhere, unable to breathe...and don't ask me in which order I realized all this, because I slipped into panicked Mommy mode too quickly to be able to tell you for sure which order it came in. All I know is, I nebbed him twice in an attempt to get him breathing. When it didn't work, I bolted out my front door and pounded on my neighbor's door for them to take Byrd. Being from a rural area originally, my immediate instinct was not to call an ambulance, but to throw my seizing, barely conscious, hardly breathing son into the front seat of my truck and speed off to the ER myself.

We got there and were immediately brought back to be seen, where they realized more was wrong than just an unusual (for him) seizure. My mom showed up, and we waited together to find out what was happening to my boy.

My perfectly healthy child was admitted to the pediatric ward of the hospital at four in the morning with pneumonia, with no symptoms prior to the ones that brought us into the hospital.

He is on steroids, antibiotics, and oxygen, with a 30% lung capacity at the moment. We don't know what happened. There were no signs, and with the build up in his lungs...there should have been. He is now sitting up and talking, with oxygen off and on, and the hope that the steroids and antibiotics will kick whatever invaded his shot system. My boy has no immune system; sneeze fifty miles away, my boy will catch the plague. I don't know how this happened. I don't know why he showed no signs of illness before those terrifying moments last night. All I know is, hug your babies tight. Run to them if they make a strange sound in the middle of the night. Because if I'd written off the strange sounds I heard coming from his room late last night...he'd be dead now.

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.