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. :)