It's Been Two Years: Our Make a Wish Journey

Today, Facebook reminded me that two years ago, Anthony received his welcome package from the

Make a Wish Foundation.  It was an emotional day for all of us.  Anthony got an envelope full of booklets and fun things to help guide him in choosing his wish.

Since then, we have met so many amazing people with some of the biggest hearts in the world.  From the Make a Wish team, to other Make a Wish families, to the RCMP personel who surprised Anthony with fishing gear and other gifts, to all the volunteers and donors at the fundraisers we've attended... we will never be able to say thank you enough times or loud enough to show how much gratitude we feel.

Now, because of Covid, all of the Make a Wish fundraising get togethers had to be cancelled.  We were

scheduled to be at at least one of these to share our story.  Because we can't, I decided to share the speech I was set to give here in hopes that it reaches some people and inspires them to also become a part of the Make a Wish family, whether is is in form of donor or volunteer. For more information the the Make a Wish organization itself, head over to their website HERE.

Hello everyone,

I’d like to start by thanking Allyson for inviting us to tell our story tonight. Anthony's journey started 5 weeks earlier than it should have. We were fortunate to have an easy delivery and no subsequent complications. We started life as new parents hopeful and completely in love with our little man. It turns out, no book out there could have prepared us for what was about to happen.

The first 18 months of his life were hard, but we were told by our family doctor at the time, normal. A

lot of new babies don't sleep. A lot of babies scream 10 hours a day, it’s just colic. When Anthony failed to hit any of his growth and advancement markers like sitting, talking, walking, we were told, well, he's a boy. He'll catch up. (Side note, we got a new family doctor)

When he was 18 months old, Anthony died. What started out as a fun family visit at his gramma and papa's turned into every parent's worst nightmare. We had laid him down for his nap. He was crying, which was usual, when suddenly he stopped. Not his usual calm down to a whimper then fall asleep cry. Just stopped. We checked on him and saw he'd thrown up. After cleaning him up, we noticed he wasn’t himself. He didn’t seem to be seeing us in front of him. His eyes rolled back into his head and he stopped breathing. Now, my husband Kyle is the best driver I know. That afternoon, you’d have argued with me over that statement. I don’t think it took us more than three minutes to get from his parent's house to the Victoria hospital. I remember passing someone on the wrong side, going over a corner when traffic stopped. I remember my baby turning blue in my arms.

When we got to the hospital, the nurses grabbed Anthony from Kyle's arms. There is no describing the feeling of watching your child get whisked away and them not letting you in the room. Of hearing the words Pediatrics to the ER. Code blue, code blue. There is no room more terrible than that little room they put you in while you wait to find out if your son will survive

Thankfully, the staff at the hospital that day were amazing and we will forever be grateful to them for bringing Anthony back to us.

The next couple of years after that day were filled with diagnoses and information overloads. But it didn’t matter, because Anthony was alive and we were finally getting answers. MRIs, EEGs, and specialist galore later, Anthony was diagnosed with cerebral palsy with autistic tendencies and an uncontrolled seizure disorder. With his cerebral palsy, he has partial left side hemiplagia which means he is partially paralyzed on his left side. As for the autism, he hates new places, big crowds, loud noises… so events like these are pretty much his worst nightmare. But he’s a trooper and I’m so proud of him for being here. Uncontrolled seizure disorder pretty much explains itself. We can never stop them all. All we do is try to manage the worst of them.

There have been many trips to the ER and overnight hospital stays but thankfully, none

as serious as that first time. Now that we know what to watch for, what triggers the seizures, what affects his medication, and what we need to do when they happen, we’ve managed to catch them before things get as extreme as when he was 18 months. We learned he'd been having seizures since he was born, but they were the small ones we weren't able to see. Just like right now. With medication keeping away the worst of the seizures, Anthony's most current EEG shows he still has 6 to 10 seizures per minute.

Because of this, concentrating on things is hard. It has made speaking a challenge. If you have the pleasure of meeting Anthony, you’ll find a compassionate young man who wants to be friends with everyone, but is hesitant because of his speech impediment.

One thing he will tell you is that he loves the power rangers, paw patrol, his animals, his xbox, the raiders, the color red, anything to do with police officers and police dogs, and most of all, above all else, he loves fishing. Fishing is his peace. His happy place. While he is fishing, things are quiet. There isn’t a lot of talking. It's just him and the fish. And he is good at catching those big pike.

I was encouraged to contact Make a Wish by another mom of a boy with cerebral palsy and epilepsy I met online. I filled out the application and then didn’t think much about it.

To say I was shocked and excited when they contacted me to let me know Anthony had been approved would be a gross understatement on my part. We made plans to meet with Allyson. All the while, I was nervous. Anthony had decided on his wish, but all the wishes I heard of were for trips or to meet people. I was scared that what he wanted wasn’t something he would be able to get.

I mean, how in the world would the Make a Wish team be able to get him his own fishing boat? And not just any fishing boat. A red one.

When Allyson and Aissa sent me the pictures of Anthony's new boat, I cried. They had done it. Somehow, these amazing angels had found some equally amazing people at Rally Motors and they had come together to get Anthony a red fishing boat.

Since getting his boat, we've found that Anthony has been more willing to talk to people he doesn’t usually talk to. All we have to do is bring up his boat. Oh, and he will be quick to make sure you know that that is HIS boat. If he catches his dad doing any work to it, he is outside in a flash to supervise and make sure he approves what's being done to HIS boat. Want to hear him laugh? Ask him how the first time he and his dad took out the boat Anthony untied the line so when his dad went to pull the boat in, the rope came and the boat floated off. You guessed it. Dad had to swim after the boat and was all wet for the ride home… funny story for Anthony, not so funny for dad.

Anthony will never drive a car, own a house…. Won't have the usual ‘future' other kids his age will have. But what he does have, is his red fishing boat, and we will eternally be thankful to everyone who was involved in making this wish become a reality for him. It may seem like such a small thing, but to us, to Anthony, it is everything.

So thank you again, Allyson and everyone at Make a Wish and to all of you who came today. Without people to support and donate time, funds and resources, there is no way these wishes would be possible.

Thank you.

Exhaustion

There are so many ways to feel tired.  Mentally, physically, emotionally, spiritually... being tired is never a great feeling.  When you're tired in all these departments, you're not tired anymore. You're exhausted.

Today, I woke up after two hours of sleep completely drained.  My body hurts, my head hurts.  My heart hurts.  I am without a doubt, exhausted.  I know a lot of people follow along with Anthony's story and while I always try to post positive, happy, and funny things, every once in a while, I'll pop a negative tidbit in there.  I mean, let's face it.  My kid has not just one, but three health conditions.  Life isn't always going to be roses.

About a month ago, Anthony started to have dizzy spells.  Some minor.  Some major enough he would fall and sometimes throw up.  We did some blood work, but his medication levels seemed to be where they were supposed to be.  The only thing out of the ordinary was a low white blood count. Now, before you panic, one of his medications can cause this.  It can also cause dizziness. Because his med levels were normal, his neurologist sent us to our family doctor (neuro is an hour and a half away in a different city) to get checked out.

One physical later, and Anthony was given a clean bill of health, minus the dizzy spells.  Our family doctor decided that the best way to rule out the carbamazapine was to lower the dose.  If he was suddenly showing two side effects of that medications he'd never experienced before, then maybe it was the culprit.  Of course, that meant that with a lower med level in his system, we'd have to watch for seizures.

I'm not going to lie.  I was hopeful.  I thought, well, if the medication is making him feel like this, then maybe he doesn't need to be on that high a dose.  Maybe the rest of the meds he was on were enough to keep the worst seizures away.

A week after we lowered the dose, the dizzy spells went away.  I thought, "Awesome!".

A week after that, and we started to notice small changes.  He had more trouble sleeping.  He was quick to get upset. 

It's been one more week since that second week and there's no denying it.  He's having more seizures.  Not the ones where he loses conciousness and stops breathing, but the ones he has right before he has those bad ones. He's not sleeping because of them which leaves him exhausted and moody, and just not in a good place.  He has to stop what he's doing multiple times a day because of them.  There's nothing like your teenage boy yelling "mom" in a panicked voice as he runs to the nearest bed so he can lay down in case he falls.

It's been an exhausting month.  And yes.  I know I'm using that word a lot.  I'm too exhausted to think of a different one.

Last night, we gave him his higher dose of medication.

This morning, I woke up crying.  Because I'm tired.  Because I've only gotten a couple hours of sleep per night the past month.  Because now, Anthony is going to feel gross while his system gets used to the higher level of medication. Because it's going to take at least a week for the higher levels to help bring down the number of seizures.  Because, after all of this, was it even the carbamazapine that caused the dizziness?  Did I just put my son through three weeks of mental and physical hell for nothing?  I don't know.  I have no fucking clue.

In two weeks, we have an appointment in Saskatoon with his neurologist.  Maybe the dizzy spells will be back by then.  Maybe they're gone forever.  Until then, we'll just try to rest and stay positive.

Anyway.  That's my Anthony update for now.  And don't worry.  I'm sure something cute or funny will happen soon and I'll be sure to let you all in on it.

Have a good week and stay safe. <3

Me: It's Been a While Since my Last Massive Panic Attack... Life: Hold my Beer.

Now, had this been five months ago, I'd have drank that beer and gone to buy another case. But it's not five months ago and I've been sober that long.  (Yay!) I'd be lying if I said it was easy to get here.  Truth be told, the first little while was pure hell.  I was crabby, cranky, rude... well, you get the point.  And while staying sober would be hell on the best of circumstances, I picked summer to do it. 

Yeah.  You know.  Bonfire, sit in the sun, have a beer camping season. Oh.  And then I traveled to Ontario and Quebec to visit all of my family and attend my brother's wedding. 

I spent the first three months avoiding social events and if I found myself at one, I sat away from everyone, usually in a different room. (fun times)

The first three months, I also had zero control over my anxiety.  Though my meds had managed to keep things in check while I was drinking, they did nothing while I detoxed and fought the cravings.

BUT! I pushed through that three month mark and things got easier. I got the anxiety under control and I started becoming the wife/mom/person I had been before I let the alcohol poison my life.  I never could have made it without my support system. (my husband, my family and friends, and my kids)  They're phenomenal.

So, most of you know the story with my oldest son, Anthony.  He got handed a shitty hand when he was born with cerebral palsy with autistic tendencies and epilepsy.  You've seen my twitter, instagram, and facebook posts of seizures, horrible nights, and behavior issues.

As I write this, I'm laying in bed with him and we're watching Rescue Bots. 

But life with Anthony has been life for the past 13, almost 14 years.  Holy shit, he's almost 14 years old!  Anyway, even though we have our stressful moments, it's our normal and we're used to it. (though, he does like to throw us a curve ball every once in a while. lol)

A little while ago, I made the mistake of thinking to myself that things were going great and I forgot to knock on wood.  ALWAYS remember to knock on wood.  Because if there's one thing life knows, it's that if it wants to mess with me, the best way to do it is through my kids.

Since then, I've had to watch my princess go for bloodwork and a renal and bladder ultrasound to see if they could find what is causing her to have multilple infections a year.  She was a trooper and thought it was cool she could see her insides on the tv and thankfully, no abnormalities were found. She's now going to be seeing a pediatrician, though that's not until January. I'm not sure what the next step he'll suggest will be, but like I said, January, so I'm trying to not think about it too much. (yeah right)

Two weeks ago, Emery came home from school, crying because his back hurt.  It turns out he was playing on a play structure at school and fell from five feet up onto his back.  We rubbed him down, let him soak in the tub, and when that seemed to help, we chalked it up to sore muscles from the fall.

A week later, ( a day after Ashtynn's ultrasound) he was still in pain and a trip to the doctor was made.  There, we were told there was a possibility he might have a fracture on one of his vertebrae and he was sent for xrays. 

A few days later, I saw my doctor's number on my phone.  Now, some people might think, oh well, but our doctor only phones us if something comes up in the tests that were taken.  Go for bloodwork, no phone call, you're fine.  Xrays, no phone call, all is good.

So, I took a deep breath and answered the phone, all the while wondering if I was getting news about Ashtynn or Emery. 

It was Emery.

It turns out he doesn't have a fracture on any of his vertebrae.  What he does have is Spina Bifida Occulta.  To my doctor's credit, he assumed I'd heard of Spina Bifida and rushed on to say that it is also called closed Spina Bifida and that it is the mildest form of the condition.  After easing my worry (I'm not going to lie, as soon as he said the name I imaged Emery's spinal chord ripping through his back... even though I knew it was something he'd obviously been born with and has lived with for eleven years with no issues whatsoever) he told me to bring Emery in and he'd explain more of what would happen next.

This morning, we went to the office. Some of Emery's vertebrae did not form properly while he was developing, therefore, he has a space which exposes his spinal chord. Though Emery hasn't had any symptoms (other than his back getting sore much more often then his siblings), there is a possibility that as he grows he could start having problems such as leg pain/ numbness, as well as other things.  He is now being referred to a pediatric specialist in Saskatoon where they will do more scans and decide what our game plan is.  Thankfully, because he doesn't have any symptoms, the chance of surgery is very small (pretty much non-existent) at this time. 

Now, I thought I was handling things well enough.  I did have an hour or so after the appointment where I felt a bit overwhelmed, but that passed and well, life.

It's funny how one tiny thing can set off a panic attack.  All it took for me was to look at my calendar and see I had to take Anthony to his Neurologist on Wednesday. 

Done.

I managed to get to my room and hide under the covers before my breathing went to shit and my chest contracted to the point I was sure I was having a heart attack.  I'm not sure how long it went on (it always feels like hours), but I finally remembered to do all my "it's a panic attack, it will pass" exercises.  I'm actually pretty happy with myself, I didn't even take an ativan (evil, tiny pills, they always put me to sleep). 

And even happier with the fact that I didn't even think about having a drink.

So, that's pretty much it.  I've had my meltdown and now it's back to business as usual because, well... this blog wouldn't be called Life and my Retreating Sanity if life was all rainbows and unicorns. :)