Wrath Of Mom

I have been writing a few angry posts as of late, and I’m sorry about that…
But I am beyond livid. My son, just like hundreds of thousands of other children that have any disabilities, is getting left behind.
In previous posts I have discussed the “free” health care that is not working for my son including not receiving therapies that he desperately needs. Now we have submitted forms to get some coverage(75%) for an AFO to assist my son in walking and hopefully correct some (if not, all) of the muscle weakness in his left side…
Now, I had these forms completed and sent in over 5 months ago, just waiting on a diagnosis letter. When that finally came in, I sent it immediately, weeks later I was called and asked to send things that I had already sent in. Two days after that I was asked to provide proper identification for my son, that I had previously sent with the original application. Now, I thought, we wait 6-8 weeks to see if he’s going to get this funding.
Going with my gut, I called this morning to find out the status, and I was informed that it would take a minimum of 90 days (90 business days from the time I re-sent the forms is OCTOBER 6). So my child has to wait another 4 months to see if he even qualifies to get help for his Cerebral Palsy, plus drug benefits to cover his $200+ anti- seizure medication costs. Not to mention the fact that he won’t be wait listed for IBI because he “doesn’t seem to need it right now” as he grows increasingly frustrated with his inability to communicate.
Now, I’m not a professional, I’m still pretty new to this… But how is it that a 3 year old is being shuffled under the radar? Anyone want to take a guess?? It MIGHT have something to do with the colossal CUTS to health care, or cuts to IBI, cuts to early interventions services(which lets face it, weren’t that “early”). Or it could be that MY son is one of AT LEAST 27,540 children 0-4 getting shoved through the system as quickly as possible so that they don’t further “burden” the system!
I wonder, how would you fair in OUR position? Kathleen Wynne? Want to try it out for a month? Want to live on MY budget? Try and fight tooth and nail to get someone to pay attention to OUR kids? How about you try to be on the front lines, be an advocate as well as a parent/ spouse. How about you go through the stages of booking a brain surgery, while battling with mental health issues?
Or take any of my fellow MOMstars life and live them for a month? Because you clearly have no knowledge of what these cuts are doing to Ontario families.
I am F*****G PISSED!
And if you can’t understand why, then YOU are part of the problem. Stop watching, get off your perfectly polished behind and start FIGHTING for OUR kids that have just as much of a right to a successful future as every other kid. STOP PUSHING PARENTS OF CHILDREN WITH DISABILITIES AROUND!!!!!

One Day At A Time, I’ll fight for you Nicholas.

GOOD NEWS

Hey everyone,
I’d like to start by thanking you for following our journey.
I will follow up by letting you all know that this is a GOOD news post, and being that it’s the second post of this month, it darn well better be!
We had our appointment at Sick Kids on Tuesday, we received a timeline!
We are getting 5 “tests” done in the next 3 months(they have been ordered) so that at our follow up appointment(July 26,2016) we can discuss what TYPE of Epilepsy surgery will take place, and WHEN it will take place.
Relief, I hate to say the word given the circumstances, I feel a HUGE relief… It’s so nice to have doctors and nurses take you seriously.
It’s a relief because SICK KIDS is NOT taking their time, and acting as if I’m just another stupid parent, as if I’m a hypochondriac or that my son’s health isn’t as important as other kids.. My son is being given his BEST chance, and there is nothing in this world that makes me happier.
EVERY kid deserves their best chance, and as I have expressed in previous posts; I didn’t feel like he was getting the care he deserved(he has always received amazing care from sick kids).
I am relieved because this will give him a better shot at a “normal” childhood, if we can stop his seizures then we have won “half” the battle..
We can live with CP& ASD. With these seizures continuing to evolve and cause damage, there is no living, there’s only coping and hoping that his seizures won’t one day turn off his brain, or he won’t suffocate in his sleep because he’s had a major seizure… I want a better LIFE for him than that, as parents, don’t we all?
I’m one of the lucky parents, as far as we know, this can be “fixed”. This can be stopped.
I’m so thankful to be one of those lucky parents..
But, to be honest, I already knew I was a lucky parent.
I have 2 of the world’s most amazing boys. And my eldest? He’s the sweetest, most caring, sensitive little guy. He changed my life, and is one of the biggest blessings I have ever had.. He continues to be a blessing, every single day.
I am an honored parent of a Special Needs child.
And together we take this life One Day At A Time.

 

 

4 Days

We now have 4 days(excluding today) until our appointment with the Epilepsy Surgery Unit at Sick Kids.
I like to think that I am strong, that I pull my strength from my boys.. Being truthful right now, I feel like an absolute lunatic.
The faster this day approaches, the more agitated, emotional and anxious I get. Nothing about this appointment will be comforting, we will take our biggest strides toward getting Nicholas prepped for surgery.. Nothing about this IS or has been “normal”. I know everyone has their struggles, some worse than others. I’m not going to pretend our issues are most significant, but in our life they are very significant and have changed our dynamic completely. Everyone fights something different and everyone handles things differently.
That being said, right now I feel powerless in my own journey. I am not in control of my life, only in control of my emotions and even those are static.
I didn’t know where this was going when I sat down to write. I just knew that with how I was feeling, I needed to write so please be patient..
In light of my previous revelation, something I have left out while being “totally honest” with you guys, I have been and still am coping with Post-Partum Depression.
Not many people know this, mostly because I don’t want people thinking I need attention(or that I want it), and I’ve been embarrassed to tell anyone.
Writing this down, I know that sometimes its easier said than done but; who gives a damn what people think.
I’ve always been the type of person to do things by myself, to graciously decline any type of help… After all, that’s what Independence is… WRONG.
Independence isn’t refusing to ask for help, that’s stubbornness.
Part of being strong and independent is realizing when you need help and when you have a problem. This was an issue I couldn’t fix by myself.
In light of being completely honest,it was on my way to my 6 week appointment for Orion that scared me into talking to my doctor seriously about what I was feeling. I am not going to get into WHY because that’s a part of my story that I do not wish to be told.
I have a few things to say to everyone, not just those suffering.
Depression is not embarrassing. It does not mean you are weak, this is something I’m teaching myself daily.
Depression is not a cry for attention, it’s just not.
It does not mean you are less of a person. It doesn’t mean you’re anything other than yourself. A different and equally lovable YOU.
I have my days, I have really good days. I will have weeks where I’m so happy that my heart could explode.
I have my really bad days where I cry, lash out, have a short fuse, can feel my heart tightening and can feel it choking me..
I’m getting better, by myself and with the help of my Family Doctor, and more importantly my amazing family/ support system. I have considered the medication that has been prescribed to me, but I am learning to find at least three positive things on a bad day.
I am learning to love myself (body and soul), I am learning how to LET myself have bad days, to cry or scream it out. I’m taking my vitamins, and going for walks.
This journey has been exceptionally hard on all of us, but we can and will survive this.
We will go through our ups and downs. We will battle our fears and imperfections.
We will continue to take this journey One Day At A Time.

I wrote this yesterday(about 17 hours ago) and hadn’t posted until one of my good friends encouraged me to do so. Thank you Dan Lucas.

I’ve included a link for the Sick Kids foundation, please feel free to make a donation.

Sick Kids Foundation

Growing Together.

We’re coming up on a year of hospital visits, needles, tests, screenings, and so on.

He must know I’m on edge about these next few months… He’s been extra sensitive to my energies lately.  We’ve got an “anniversary” to deal with and next steps to discuss. The whole while I’ve forgotten to mention his feelings in all of this. I’m very good about explaining my woes but never have I mentioned my son’s!

I have never, in my entire life, been more proud of another human- never mind MY tiny human. This last year he has shown strength, resilience, patience, spirit, And understanding. He has shown me how to power through, and continue to be happy. He has shown us intelligence, comfort and his ability to thrive in difficult times. He has also shown us that he can work through his pain, he can overcome his personal obstacles, he can fight. My almost 3 year old has taught me more about life in the last year than I’ve learned on my own in the last 23! I can’t say enough about him, about his energy, or about his character

Many of you will tell me that I’m strong, and I am courageous.. But my light dulls in comparison to my mini-me.. I pull my strength from watching him, he IS the reason we are still standing.

Among other things, I am nothing short of in awe of my little man. I know how much he’s taught me, and I know he will continue to teach me everything I’ll ever need to know. We are not just coping, we are LIVING.

I think it’s important for us parents, to watch our children. They’re teaching us something every time they move. Take time out of your day, ten minutes, an hour, and just Pay Attention… I’m sure you will be in awe too

Thank you for reading.

-Jacklyn.

Free Doesn’t Always Mean “Good”.

This next post is going to seem like a rant… That’s okay, it sort of IS a rant..

I’m angry… I feel that it is very important for you to know that when your child is diagnosed, this goes for any diagnosis, there is a “grieving” process that you NEED to let yourself go through.
For almost 7 months I was in denial, I refuse to believe he’s any different from EVERY other kid(he still isn’t, as far as I’m concerned, he just has some physical limitations). For 2 months I was sad, really sad. I cried every time I thought about his future, every time I booked an appointment, in truth; there wasn’t much I DIDN’T cry about. Was this “acceptance”? I still don’t know.
NOW? I’m angry.
My town has 1 physiotherapist, *they* were supposed to retire this year but ultimately can’t because we don’t have the resources. I’m angry because he’s been seen by the physiotherapist two times, occupational therapist once, speech and language pathologist four times and has been released from that program(even though he’s still not speaking).
I’m pissed off because Doctors, Nurses and Therapists alike treat me as if I’m stupid or unreliable because I’m “young”.
But most of all I’m FURIOUS that my son’s legs look like this(pictured above), that his bones are forming MORE curved than when we started, that THIS is the closest he will stand “feet together” without screaming in agony.
I’m hurting listening to my son cry while we do his exercises, and waiting for someone to help him (almost a year later).
I’m tired of begging for health care providers to listen to me, and to help me get the equipment he needs. I’m tired of these services being “free” but unattainable…
All of that being said, I am NOT giving up.
I WILL fight, i will continue to advocate for my baby.
I WILL do whatever it takes to get the care he, and every other kid, DESERVES.
I WILL continue fight for the rights, care, and compassion that every PARENT deserves!
I WILL continue to take this adventure One Day At A Time.

Thank you for reading and responding.
Please be patient with me, I haven’t quite mastered this “blog” thing and haven’t figured out how to respond to comments.

Much love,
Jacklyn Johnstone.

 

April 25, 2015.

First of all, this is my very first blog post so go easy on me.
This day started like any other day with my then, almost two year old.
We had almost 30 words and a desire to potty train, he is the brightest kid i had ever met personally (I am a tiny bit biased).
We went on our merry way, Saturdays are our favorite. I made his oatmeal, and was walking to the living room to grab a toy, I walked by and peeked into my little guy’s room to see him playing with his toys and shoving them under his bed. Less than a minute later I was on my way back to the kitchen, peeking into his room again.. This time he was not so lively, I could only see him looking at me so I asked “Do you need my help, lovely?” As I walked closer I could feel myself pick up in a run. When I got to him he was shaking, full blown seizure.
Step 1: Turn him on to his side.
Step 2: Make sure he is in a safe place and can’t get hurt.
Step 3. Remain calm and speak in gentle tones.

62 seconds later, I finally heard his voice. He had wet himself, and couldn’t stand.. His left side was temporarily paralyzed.
The ambulance arrived, and brought us to the closest emerg. 2 hours, 4 vials of blood and a nap later and we had no answers. Doctor said “there’s less than a 50% chance that he will have another episode.” I later learned that it was actually 49%..
We were home less than an hour before his second seizure happened.

Immediately we made our way to Orilla as they have a Pediatrician on call. We were then admitted for observation, his 3rd seizure hit around 8pm, he was given Phenobarbital to stop the seizures which had actually resulted in him losing mobility. The next morning he was given Tegretol  which a few months later needed to be switched due to aggression issues.

5 days after being admitted we had a diagnosis; Right side Polymicrogyria, and Mild Cerebral Palsy that was caused by the Polymicrogyria.
We have since learned that he will suffer seizures for the rest of his life, and that Sick Kids is starting paperwork for Brain Surgery.

As I sit here, 9 months later, I remember every single word that was spoken that day.
I remember every sound, smell and feeling.
For the last 9 months it has been a struggle, yes with all of these revelations, but mostly with myself.
Trying to treat him the same, battling depression, and dealing with residual anger and frustration.
For the very longest time I thought “Why Him?” But watching him play makes me believe there is a greater plan for this little boy… He has shown such strength,  courage and adaptability (just to name a few).
I know I will have days, sad days, happy days and angry days.. I know he will too…What I wouldn’t give to hear him say “mommy” again… But to have him HERE with me is the greatest peace of all.

I am starting this “blog” so that women, men, who ever needs this, can see that they are not alone. You ARE strong, you ARE a great parent and you ARE NOT alone.
I promise you, if you have no one else; you have me. If you have all the support in the world and still can’t find comfort; you still have me. There is NOTHING in life that you need to go through alone.

Please enjoy, follow along, comment, share, email.
I would love to hear from you as I continue on this journey.

Much Love,

Jacklyn.