Rights and Other Rants

September 3, 2013.

The day Kelli Stapleton made a decision that she can never take back.

The day she, an advocate and blogger for autism and related issues, decided that she and her autistic daughter Issy would be better of "going to heaven."

I don't go off about these hot button issues often. I try to keep what I write about MY sons, and OUR life, not the choices someone else made, because I am not Kelli, and I do not know what drove her here, to the point she reached. I imagine she was scared, and desperate, and, much like those who are suicidal, felt she had no other choice. And I know she says she regrets what she did, and that she does not feel worthy to beg her daughter's forgiveness.

This post is not about her. Well, it is, but it isn't.

This post is about the condoning of what she tried to do. Let's put her aside, let's put her interviews aside, and let's focus on the bare facts: a mother tried to kill herself and her child.

And there are those who are condoning what she tried to do.

There are those who say it is okay, because Issy is disabled and that makes life hard.

No one is going to argue that it does, indeed, make life hard. No one is going to argue that fact.

But I'm going to argue this: if Issy Stapleton had NOT been disabled, would these people still condone what Kelli did? Would it still be okay?

And the answer to that is NO. The world would be disgusted, outraged, infuriated. There would be no forgiveness for Kelli, no "We understand" for Kelli. There would be mobs calling for justice, for her blood.

But because Issy is autistic, because Issy was aggressive, it's okay? It's okay to deprive her of the basic right to live?

Because Issy has rights, folks. Issy had a right to expect her mother to keep her safe, not hurt her. She had a right to expect that she could safely get in a vehicle with her mother and NOT wake up three days later in the hospital. She had a right to expect that she could fall asleep and wake up perfectly fine, as she has every other day of her life.

Most importantly, Issy has a right to LIVE.

Anyone who says otherwise...I pray you never have a disabled child, because I fear for that child's life if you do.

You who condone what Kelli did, you who decided that Issy does not deserve to live...

Would you condemn my sons, then, to death? Because neither of my sons are exactly "normal." This blog started for K. On Friday, Byrd was diagnosed with autism. Do they not deserve to live? Does Byrd deserve to live, because his only problems are ASD and SPD? Does K deserve to die because his problems run deeper, and are much more complex, and because is not as high functioning as his little brother? Do my sons deserve to die because they are not "normal?" Would you sign their death warrants?

Because by condoning what Kelli did, by saying it was okay because of the disability her daughter lives with, you're saying that MY children, who have the SAME disability, do not deserve to live.

And I am not okay with that.

Just like neurotypical children, Issy, my sons, the other children and adults living with disabilities, DESERVE TO LIVE. They have the RIGHT to live.

And NO ONE, be it a parent or a caregiver or a stranger, has the right to take that life from them.

Putting On My Mom Face

Yes, hello Dr. Frick. Yes, I know K has an appointment with your office in three weeks. Yes, I know we'll be discussing tibial torsion surgery. Yes, thank you, we'll see you then.

That's what I said on the phone.

Here's what I wanted to say, and probably will in person.

Yes, doc, I'm aware that we need to discuss K's legs and what we're going to do to keep them functional as long as possible. I'm aware that you are good at what you do. And I get that you care about my son and what happens to him.

I care, too.

I care that he remembers spending months in casts, that he didn't understand why he still had casts on after his surgery. I care that he views casts as a form of torture. I care that next year he'll be starting kindergarten. What kid wants to start kindergarten with his legs in casts and metal screws in his bones?

I care that right now, I have a little boy who can ride his bike, and walk, and run. He's used to his braces and wears them without too much fuss.

So, no, good sir Doctor Frick, I do NOT want to talk about his surgery.

I want to pretend, for a little while at least, that my little boy can have the life he deserves.

I want to forget, just for a little while, that life has thrown him a very rough hand indeed.

I want to watch him run and laugh and play with his little brother.

Because it wasn't you who had to deal with the aftermath of the first time he was cast, or the second, or the third, fourth, fifth, sixth, seventh, or even eighth. It wasn't you who had to deal with the fall out of his surgery.

It was me.

And I still can't shake the image of my son having a panic attack in the OR, because of course I sucked up my fear and my nervousness and put on my mom face and I went in with him. Until your nurse pulled me away from him because he couldn't breathe in his panic. And I went back to the waiting room, and collapsed into my mother's arms.

And I still can't shake the horror of seeing him in recovery. I have nightmares about his screams. The sight of my beautiful little boy in casts all the way up to his hips, screaming in fear and pain...the sound of those screams...the tears...the begging me to take it away, get the casts off him, take him home, get him his daddy who couldn't be bothered to come down when my best friend offered to bring him with her, because of course she was there...of course she was...she's never missed anything like that and never will if she can help it...

And I still can't shake the horror of the morning after surgery. The seizures...the sound of my three year old son's voice informing me he didn't want to live anymore...watching nurses restrain him because I couldn't help him...watching him lay there day after day, not eating, not talking, not looking at me...he didn't want to do anything. That surgery stole him from me all over again.

And I don't want to think about doing it again.

Because I'm selfish, and I'm scared, and damn it I'm only 24 years old, and he's only 4, and how is this fair?

I don't want to think about what you're going to do to him. What you have to do to him. I don't want to face it. And I certainly don't want to talk about it. I want you to do it. I want you to set it all up, and just call me like the day before and let me know when I need to have him to the hospital, because really I can't go through months of worry and counting the days and weeks and praying that he wouldn't bleed out on your table, because honestly, surgery on any child is a nightmare, but surgery on a child with a blood disorder can be a death sentence. And no parent want the guilt of knowing they signed their child's death sentence.

So, no. No, I don't want to talk to you, and no, I don't want to go to your office.

Because I'm selfish, and I'm young, and I'm scared, and this really just too much.

But.

But, I'll put on my mom face, and we'll be there, and we'll talk about it, and we'll decide what's best for him, and he'll sit there oblivious to what's going on around us because he's obsessed with your name tag and the way it snaps back to you on its little cord when he pulls on it. And I'll load him back up in my truck and take him home, and try not to stare at the calendar and count the days, and try not to cry every time I watch him walk, because one mistake and he's paralyzed. One mistake, and I won't be bringing him home again.

And the time will come, and I'll swear up and down I'm not walking him to the OR, because I can't watch it all over again, but we both know I'll be there. We both know I won't leave him alone for a second longer than I have to. And we both know you'll find me, hours later, in the waiting room, holding his Tow Mater pillow, probably crying into it, with my mother and my best friend, to tell me how it went. And we both know no matter what you tell me, you'll watch me cry some more, either out of joy or out of sadness.

And we both know that's just the beginning.

Mistakes Made, Lessons Learned

I noticed I turn to this blog at times of high stress or worry, or the occasional wonderful thing. Sometimes just an update.

Well, have another worried, high stress entry in the saga of this family. Because Murphy's Law, you know.

K cannot have gluten, dairy, etc. Not "Mommy jumped on the latest fad diet" can't have it-"it makes him hospitalization-worthy ill" can't have it.

And I've known that for two years.

But I got lazy. I was tired, and sick, and in a rush, and I got lazy.

I stopped ensuring he had his proper food with him when he went to other people's houses, because he is not their child and I don't expect that they'll have K-friendly food simply lying around. I started letting him have fast food every now and then, because I was in a rush, we had an appointment two hours away, and I forgot the cooler.

And I know better.

There are no excuses. There is no forgiveness for this.

Chalk it up to another failure.

I knew better.

On Monday, I woke up so sick I could hardly stand. I went to the doctor. He told me I had the stomach flu.

K had been sick since last Wednesday. I chalked it up to the stomach flu. But, just when I thought he was getting better, he got worse. So I called his doctor and rushed him the three blocks over to his office.

Six rounds of blood draws, two x-rays, and a lot of vomit and diarrhea later, K has an inflamed, enlarged colon and is quite badly dehydrated, with potassium and sodium levels severely out of whack due to the dehydration.

How did this happen, you might ask?

Simple: Last Wednesday, I packed him and his brother lunch-one for school, the other for the sitter. I switched the lunches on accident. K got Byrd's wheat-filled spinach raviolis. Byrd got K's chicken and rice. The first assault to his tummy.

That night, I had to work a night shift, so my neighbor took charge of my boys. I forgot to bring dinner, and they fed my little K gluten filled food, because they didn't have anything else and thus no other choice.

Saturday, I went out for the first time since moving back to FL-a date with my mom. My stepdad watched the boys. Once again, I didn't pack them food. My parents have plenty-why bother? Oh ya-because they are not responsible for K and thus do not have GF, dairy free food on hand. K had more food he couldn't eat.

Monday, sick as a dog and too tired to think about what I was doing, I gave in to K's demand for a cheeseburger on the way home from school. I got him a gluten and dairy filled burger from McDonald's.

By Tuesday, my sweet boy was sick as a dog, pale as Casper himself, and could hold nothing down. At this point, I knew I had the stomach flu. I assumed that's what this was. I didn't add up what he'd ingested until this afternoon, when all the test results came back and his doctor looked at me "Had you not brought him in, you could have killed him."

A well-deserved punch to the gut.

I know better. I know he can't have it, but because it is not like a "normal" allergy (it upsets his tummy-no big deal, right?), and because I had been so good about it for so long, I didn't think it would do so much harm. And one day probably wouldn't have. But his poor little tummy didn't have time to heal from the initial assault of the switched lunch bags before the next assault at dinner, and the next assault just a few days later, and the next...

Why? Why did I even allow that junk in my house? Knowing he couldn't have it, why did I continue to buy it for my other child? It's a) not a good idea, exactly because of what happened on Wednesday, and b) not very cost-effective. What on earth possessed me to forget to bring food that he can eat to the homes of people he does not live with, whose responsibility does not fall into making sure he has food his body can digest? Why, knowing what it is, would I bother to buy him a meal from McDonald's?

A million reasons-a tired, over-worked, sick single mother not thinking straight...it's easier...it's cheaper...so on and so forth.

And I wrought medical havoc on my little boy's tummy.

GF is not a fad.

Do not sneak little Johnny a piece of cake because "Oh, his mother just jumped on the bandwagon."

She might have.

Or little Johnny could be just like K, and you might be the nail in his coffin.

My little boy is going to be just fine.

I lucked out. We caught him in time to keep him out of the hospital and heal his tummy.

I threw out all the "normal" food in my house tonight. I will never buy it again. I don't care how much easier it is-I will stop at the grocery store and buy a box of GF crackers if I must the next time we've got an appointment and I forget the cooler.

I have no excuse. I knew. I knew, and I let him have it anyways. I got lucky this time, but I will not allow a next time.

Don't just assume a parent has jumped on the bandwagon of GF and dairy free. Don't just assume a child can have whatever yours can, simply because your child has no restrictions.

For God's sake, don't make my mistake.

You might not get so lucky.

Rite of Passage

Every American child knows that getting your first bike is a rite of passage. It is the first of many large, noticeable steps on the road to independence and earning your parents trust.

For his fourth birthday, K joined the ranks of American children who own a bike.

Knowing that he likely wouldn't be able to use it, and would possibly be upset about it, I chose to get him a bike (with training wheels!) anyways-what harm could it do? If he had it and couldn't use it, it would serve as motivation to learn to use it, to learn to use his leg muscles in ways that they were not designed for.

K will not watch where he is going. He stares instead at his feet on the pedals. He cannot get off the bike on his own. He cannot turn. He cannot stop himself.

But he can get his helmet and pads on himself. He can get on the bike himself. Best of all?

HE CAN PEDAL BY HIMSELF.

"I do not want you to help, Mom," he said to me, as he climbed onto that bike again. With a storm raging outside in the Florida heat, I had decided to allow him to attempt riding his bike in our living room.

Imagine, if you will, my absolute shock when, while draining the pasta for dinner, I turned around to find him seated proudly on his bike right behind me...and the jolt when he asked me to help him get off, at which point he turned his bike back around, clambered back on, and rode proudly off into the living room.

ALONE.

No Mommy pushing him, no adult running along behind him, ready and waiting to patch up his ouchies when he falls. ALONE. He crashed into a wall when he couldn't figure out how to turn to avoid it, a problem he wouldn't have encountered to start with had he bothered to look up from his feet on the pedals, and he cannot get down alone...

BUT HE CAN DO IT.

Children all across the US learn to ride bikes by the time they are in kindergarten without training wheels. K will enter pre-k in two weeks; his bike has training wheels. His bike will probably have training wheels for a very long time. The point is not how he does it, the point, my dears, is that HE DOES IT.

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.

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

How to talk to your autistic child about surgery

Step 1)
Determine what the surgery will be.

Step 2)
Determine when the surgery will be.

Step 3)
Have a panic attack.

Step 4)
Sit your child down. Open mouth. Close mouth. Walk away.

Step 5)
Sit your child down again. Open mouth. Close mouth. Repeat several times until your (undoubtedly very blunt) child asks you why you look like a fish.

Step 6)
Throw in the towel. Make the doctor do it.

Dear Kai

Dear Kai,

I love watching you run. And jump. And try to skip. And just...being an active, hyper little boy. I love it. There's a flash of pride, because that's my boy, and look what he can do! There's a bit of "Ha!" thrown in, because how many doctors said we'd never see the day you would walk on your own? And there's a bit of laughter as well, because you're so funny.

And in just over a month, I'm going to take that away from you.

I'm sorry.

Mom and the doctors aren't trying to be cruel or unfair, and I know that's exactly what I'm going to hear, wails of "Mommy, it not fair! Kai wants to play too!" And you're going to be in casts for three months, unable to walk.

And it's all because of a decision that's never been in your hands, and instead was placed in mine. I could have said no. No one would blame me-you're my baby, and surgery is incredibly risky for you. Even with medication for your blood disorder, it's still risky, as it is for anyone. But I choose to go through with it, because I think the outcome is going to be better for you.

You see, your feet and legs...they're not like Mom's or Taryn's, or even Lala's or Connor's. Your muscles, baby...they got hurt when you were born. And your bones didn't grow right, and your tendons, little things like rubber bands that help your muscles and bones work, they can't do their job right-they're not long enough. And there's some stuff going on in your head too that keeps you from being able to walk long distances without falling, or run without tripping, and it's why you can't skip and Connor can, and so much more, and there's nothing I can do about your brain. Not a thing Mommy can do to fix what happened to the connections in your head.

But I can fix your feet. And your legs. So much of what happened with you and to you, Mommy can't fix. I can never make it go away. And it's Mommy's job to fix things, and to give you the best I can. So I'm going to fix what I can-your legs and your feet.

And I know it's going to hurt. And I know you're scared. I'm scared too. I'm scared that it's not going to work. I'm scared that something will go wrong. I'm scared, terrified, really, that you won't come out of it. Oh, I am so scared of that. It's been my biggest fear since they broke my water the day you were born and there was blood when there shouldn't have been. Your whole life...I've been terrified something horrible will happen to you.

But we can't let fear control us, baby doll. We can't let fear keep us from doing things that might improve our lives or help us get further in life. The most courageous thing you can ever do is face your fears and push through. And you, my little Batman, have pushed through so much. When I lose faith in my ability to push through, I think about all you've done and how far you've come and everything the doctors said you'd never do, and I know I can keep going. You're not as "fantastic" as some kids, who've pushed through things much more horrible than you have-kids with cancer, kids who've survived horrific abuse, kids who were born with fatal illnesses or genetic issues that should have killed them who are still alive and pushing through every day-but you're still MY superhero, and you've come through a lot. I keep faith that you'll come through this too, no matter how scared I am.

So, baby, we're going to face this fear head on. Aunty Sarah is coming, Lala Lilly will be there, and you know Mommy won't leave that hospital without you. Never have, never will. We'll push through the pain together, and we'll learn to walk again...together. One step at a time, baby blue.

I love you moon back to pizza,
Mommy

Emote A Little, Will You?

Happy. Sad. Angry. Sleepy.

No, not the seven dwarfs. Emotions. Feelings. Those things that we all deal with every day.

It's like a foreign language for kids with autism, did you know that?

It's a fact I learned the hard way.

Kai doesn't understand emotion. His own or anyone else's. It's like being a foreigner in another country whose language you've never learned. (See "Welcome to Holland" poem for details.)

Conversations about emotions have always gone a little something like this: "It's okay, honey. Mom's just frustrated." "Oh. Kai fwustewated too, Mommy." "Ya? How come?" "I don't know."

It's not that he can't feel. He does. It's not that he can't empathize or sympathize. He does. He just doesn't know what it is. He has no clue how to identify any of the emotions.

After a lot of early intervention and therapy and feelings charts and discussions and play and LeapPad 2 apps, Kai has finally learned happy. He knows happy. He's GOOD at happy.

But human beings are not a single set dial on the radio. We are complex beings with complex emotions that reach far beyond the realms of "happy."

Understanding one emotion will not get a person far in this world.

Which is why I danced for joy in my front yard, not caring who saw me or what they thought, when Kai looked at me yesterday as he was helping my sister bag up the leaves I'd raked in to piles, and said "I'm mad! My shovel won't work. Kai is mad!"

His orange toy shovel had gotten stuck in the dirt of the front yard, and he couldn't get it out. He was angry.

AND HE KNEW IT.

I have never in my life been so happy to hear that someone is angry.

So time got away from me again...

Time got away from me again! We moved in October, not far, just across town. Mommy has a job!!!!!! I'm so excited! We were blessed to be able to buy a new vehicle with help from a donation from my boss, of all people! Kai is scheduled for surgery on April 15 for his feet-little nervous...okay, a lot nervous!

Kai was diagnosed January 14 with nocturnal epilepsy. Updated diagnoses stand at: autism, ADHD, ODD, being watched for bipolar disorder, nocturnal epilepsy, asthma, allergies, CP, Von Willebrand's Disease, clubbed feet, tibial torsion, hip dysplasia, sensory processing disorder (sensory avoiding) and mixed sleep apnea. And he's only 3 and a half.

On Wednesday, we go in to test for a new medication for his VWD. I'm so excited-if this works for him, he can play sports potentially! So keep your fingers crossed, folks!

Taryn is getting his glasses on March 10th. And he was diagnosed with sensory processing disorder (sensory seeking) as well, and is on the neuro waiting list for possible absent seizures. :-( My poor little baby. But he has one heck of a vocabulary on him! He's so smart! He will be two in May, and my little Einstein speaks in complete, understandable even by total strangers sentences.

I ended my current college semester with a 3.8 GPA. I am planning to take a break until after Kai's surgery.

And so to the point of all this: Kai's surgery.

April 8th, he will go in to get a set of walking casts to help stretch out his muscles and tendons. April 15th, we will go in to Nemour's in Orlando for surgery to transfer tendons from point A to point B, which they are hoping will help release the tension in his legs and potentially enable his tibial torsion to fix itself instead of having to surgically break his legs and turn the bones. He will then be in bent knee casts for up to three months, after which he will receive physical therapy in order to stretch his muscles and learn to walk again. All in all, we are looking at a rough few months, possibly a rough year!

To answer anyone who may be curious, yes, Kai is aware of all his issues. He doesn't understand most of them, but he does know he has them. He does not try to use them as an excuse, and on the rare occasion that he does, he isn't allowed to get away with it. He is also well aware of his impending surgery, and is scared out of his mind about it. He fears casts-he has the memory of an elephant and still remembers spending the better part of his first couple years of life in them, and he is utterly terrified of anesthesiologists after his surgery when he was two. Lala is taking the day off work to come with us, and Aunt Sarah will be there as well, so hopefully he will feel a bit better about it. I know I won't!

I know some people will tell me (and several have already done so!) that surgeries like this are routine on kids like Kai and that his doctor knows what he's doing. To you, I say I don't care how many times Dr. Frick has done the surgery-the point is that he's never done it on my baby. So, thank you for your attempt at comforting me, but until he can look me in the eye and say "Nothing went wrong when we did this on your son before, and I feel confident in our hematologist and anesthesiologist and myself and our ability to ensure it goes smoothly this time too," it's a moot point. :)