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