When His Dreams Are Bigger Than He Is

"I want to be a hunter when I grow up, Mommy! And a doctor and a singer man and a house builder man and a fireman and a policeman and a artist! I want to have lots of jobs when I grow up, Mom!"

At five years old, Kyle has a lot of dreams. He wants to do all sorts of things when he's older. And while I believe in him and support his dreams, I don't have the heart to tell him I don't know if he'll be able to. 

So what's a mom to do when his dreams are bigger than he is?

I could sit him down and have a long talk with him about how his medical problems and his mental issues and his cognitive delays mean he probably won't be able to do a lot of those things.

I could break his heart.

Or I could swallow the lump in my throat and blink back the tears and smile my biggest, brightest smile at him and say, "Of course, honey. That sounds GREAT!" 

Five years of raising Kyle has taught me he is an overcomer. I can't see it now, but maybe twenty years from now, he will be one or more of the things he wants to be.

Meanwhile, I'll just be happy if he remembers to turn in his homework on Monday.

Three Steps Forward, Two Steps Back

During our hiatus, on December 1, 2015, Kyle had a bilateral derotational osteotomy. For those playing along at home who don't speak orthopedics, this is a fancy way of saying he had the tibia bones in his legs (lower leg bones) surgically rotated to the correct positioning. Kyle had what is known as tibial torsion in both legs (bilateral). Now, tibial torsion is very common in young children. It's what gives toddler legs their bowed appearance. Most children either totally work out their torsion by about three years old or have had their torsion begin to improve to a degree that their doctor isn't concerned. Kyle's legs had been rotated to -15 and +5 degrees consistently since he was first looked at for it when he was 3 years old. They had never improved, and it was to the point where, after all the other procedures, interventions, and therapies we'd done to correct his clubbed feet, we knew the continuing issue with correcting his feet and thus enabling him to walk more correctly was the tibia torsion issue. Basically, your bones hold the muscles in place. If your bones aren't correctly positioned, your muscles, tendons, etc. won't be either. Untwist the bones and the rest will follow, essentially.

The day after his surgery found Kyle in thigh high casts (rainbow colored, because of course) and unable to get around on his own. The King was born on November 10, 2015 by c-section. I was still in recovery and not able to assist Kyle in and out of bed. We were still in the hospital. Kyle was a two person lift. His nurse, M, didn't wait for assistance and dropped him in full view of myself, my mother, and Kyle's doctor, who were speaking about his expected course of recovery and projected release at the time.

This left one of the pins in Kyle's left leg, which was holding his surgically broken bones together, bent.

To say this didn't bode well is an understatement.

Fast forward three months to today.

I took the kids to the park after we picked Kyle up from school. I had noticed a tendency for Kyle's lower legs to look red and splotchy since he came out of his casts about three weeks ago. Today, at the park, they were red, splotchy, swollen, and he was complaining of pain. To add insult to injury, the poor child had an asthma attack. Guess what we didn't have?

If you said a new inhaler, you're right.

So, I called his doctor and rushed him in to see her. (He has six doctors. I'm currently talking about Dr. C, his pediatrician, who is much closer than our beloved Dr. F, the orthopedist, although he did receive a phone call from both me and Dr. C.) After consulting and discussing and congratulating Mom for taking pictures of his legs, which already looked much better by the time I'd driven him the half hour from our town to her office (she is located in the town we used to live in and we adore her. When you're a special needs parent, you do what you can not to lose good doctors. I'll drive half an hour quite happily to see her.), so the pictures I'd taken allowed Dr. C to see what I had been seeing when I called her office to come in, we have figured out what's going on.

Kyle is allergic to pollen, first off. Let's clear that up. And it's spring, so pollen is everywhere.

Anyways. Kyle's legs were red, splotchy, and swollen because his circulation is absolute crap in his legs now. Dr. C believes the asthma attack, which he hasn't had in months, was triggered by a combination of pollen allergy and being too hot- although it was 80 outside and the child was bright red from the heat, he wasn't sweating at all. His sweat glands are damaged from all this.

Although Kyle has finally gotten his wish (aside from the scars and a lurching gait, he at last looks more like his friends), this puts us behind again. Three steps forward, two steps back. He looks better, but he now has chronic issues he didn't have before that we can't do much about.

Kyle says, "It's okay, Mom. I don't mind. More stuff to teach my friends about!" (That would be all of you, by the by. Kyle calls each and every one of you, most of whom he doesn't know, his friends.)

This entry has been read to and approved by Kyle.

Kyle, the week before Christmas, shared by his request

So Exactly What Happened?

So, as promised in my posting two days ago, Exactly What Happened? Why did I stop writing this blog? Where did we go for over a year?

The readers who know us personally  know exactly what happened, but those of you who follow us from around the world that have never personally met us have no idea why one day, we were here, and the next day...nothing for over a year.

Right before my final posting over a year ago, Mom met someone. And that someone...well, let's just say Mom should really just stay out of the dating game, because Mom is just NOT good at it.

As a result of that relationship, The Crew was left with no income because Mom lost her job as a result of "someone's" issues, and left homeless because Mom had to leave that relationship and had no income to pay the bills with anyways. We ended up living in a hotel for a little while before landing somewhat on our feet again in a town about twenty minutes from where we had been, with the help of family and friends.

Also as a result of that relationship, we welcomed The King into the world on November 10, 2015. Kai and Taryn are now the proud older brothers of a bubbly, healthy little boy.

During this "missing" year from our blog, we had a lot of other things happen, too.

Taryn was diagnosed with bipolar disorder and hypoglycemia. He is also undergoing genetic testing at the moment.

Kai underwent that tibial torsion surgery on December 1, 2015. We had a lot of ups and downs with that, which you can read about on our FB page, Life With Kyle, which we started in October 2015.

Taryn and I were in a car accident on December 22, 2015. We were hit by a semi truck on our way to Taryn's geneticist. We're still in recovery from that, with Mom in physical therapy and potentially needing further help with my shoulder and back.

Kai is now in Kindergarten and doing very well. His teacher and I communicate on a near-daily basis via notes in his agenda back and forth, and I adore the staff at his school. Mr. F, his assistant Principal, is one of Kai's all time favorite people. Mrs. K, his teacher, is wonderful with him. Kai has even made two very close friends, K and M. He's also learning to advocate for himself and not afraid to talk to people about his issues. He is still very sensitive about his scars, and struggles to understand what he's done when his classmates get upset with him- he has very little understanding of social rules and acceptable behavior, and this often causes problems for him with his peers. He's also been diagnosed with Oppositional Defiance Disorder (ODD) and formally diagnosed and in treatment for ADHD, and we've found he's dyslexic, which has caused some ridicule in class from his peers as he struggles with things they find easy. Kai is mainstreamed, as we felt it would be a disservice to him to stick him in special ed- he struggles, but is too bright for the work he would receive in a special ed setting.

Taryn was given developmental and intelligence testing in October and was scored in the top 2% of the population for his age group intelligence-wise. He's very bright and I look forward to his school experience starting next year.

The King is a bubbly, healthy baby who is the unequivocal ruler of the house at the moment. He is developing on target, and is wonderfully healthy. He is Mom's first full-term baby and the first to not need an extended hospital stay. He was released when I was, and has only needed the usual well-child check ups. Even at just barely four months old, The King has a personality and is lots of fun!

So, now those of you who don't personally know us are all caught up on just where in the heck we went for over a year except for the things that I don't feel comfortable discussing. (We're very open, but there are some things that are not up for discussion.) We don't plan to disappear again! We're very excited to welcome you to the new edition of our family blog and hope you enjoy the journey! 

A Rant on Cures

So, it's been a while. A long while. And I promise I will explain that.

Next posting.

This posting, I'm going to take a second and just...rant. I'm going to rant because the subject I'm going to rant about really, really, REALLY bothers me.

BLEACH ENEMAS TO CURE AUTISM.

Okay, first of all, I am NOT a supporter of autism as a disease. I do not view it as a disease- you cannot catch autism, you cannot spread autism if you are autistic, you cannot surgically fix or remove autism, etc. It does not fit the parameters of a disease. Autism is a DISORDER. A neurological DISORDER, not a DISEASE. As such, I don't believe it can be cured. I believe each autistic individual should be given all the tools they can possibly receive to lead the fullest, most successful they as individuals are capable of. I believe that no autistic person should be told they can't be independent or succeed at their own goals in their own time simply because of autism. (Naturally, there are autistic individuals who cannot live independently, but I believe that independence should be encouraged to each individual's specific abilities.)

Those tools, however, should NOT include cleaning agents as enemas! In what world does that make sense!?

"Bleach? You mean, like the stuff I use to clean my floors and make my whites whiter? Insert it into my child's body to cure them of a neurological disorder? That sounds like a GREAT idea! Here, take my money!"

The hell, guys????? Come on! I understand, I do, I really truly do, that there are parents out there whose children are non-verbal, who cannot self-care, who are aggressive, who encapsulate the worst traits of autism as seen in the media and described by books and articles- and I get that these parents are desperate to help their children. My  heart hurts for them, because Kai WAS that kid. He's STILL that kid in many ways.

But seriously, how on EARTH does inserting a cleaning agent into your child's body get even momentary consideration!?

There are so many other ways to help. There are controversial things, like ABA. There are proven therapies, like music therapy, occupational therapy, even art therapy. There are medications for those who are open to them that can help with the aggression. There are other forms of communication you can (admittedly pain-stakingly) help your child learn to use besides their voice! (As special as that is; as mom to a formerly non-verbal child, I totally get that!)

Please, people, PLEASE, for the love of whatever you hold to be holy, STOP INSERTING CLEANING AGENTS INTO YOUR CHILD'S BODY IN HOPES OF CURING THEM!

That is all.

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.