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Diaries of a Special Needs Mom​

Ramblings from a Special Needs Mom...

1/31/2018

8 Comments

 

In your lifetime you will meet people along the way in every phase. In childhood, in your teen years, through high school, in college, and into adulthood. When Matt and I planned our family we were excited to make memories together. We saw ourselves raising a child amongst our friends who were in our same phase of life. We saw our children growing up together and playing sports together, attending daycare and preschool and having playdates together. Our worlds were rocked when our son came into our lives. Dreams crushed and our idea of our family of two or three beautiful children to never be met. We now had one very beautiful but broken child. Instead of bringing him home from the hospital to start our new life we were stuck in the NICU learning the extent of his brain damage. Instead of showing him off to our friends and family we were keeping him sheltered inside watching him seize and cry. Instead of going back to work and being scared to leave him in daycare I was home trying to get him to drink seizure medications and pumped breastmilk, taking phone call after phone call from specialists and doctors. I had cramped hands from signing early intervention paperwork, tired eyes from watching him suffer from seizures, and pained ears from listening to his colicky neuro cry. The shift work between Matt and I began, trying to give each other relief from this new and scary life. Taking turns to rest from the trying days, to think to much about our future and cry and ask why us? This new phase of life was absolutely horrible, terrible, heartbreaking and tiring. But in this new phase of life we learned to get back up on our feet and live. We learned to walk in different shoes, shoes that were not comfortable and weighed us down at times. We were on a journey that we never thought we’d walk. And we were about to meet new people along the way that we would have never connected with had it not been for our new precious son being brought into our lives the way he had. Like every phase in life there will be trials, and triumphs. When our son was around six months old our worlds were rocked again. Instead of meeting milestones like learning to sit up and grabbing at toys, he was still struggling to hold his head up and loosing the skill to suck and swallow. We were yet again met with unknowns and unfamiliarity. We were undergoing surgery to have a feeding tube placed and welcoming nurses into our home to help us care for our son. We slowly found resources and guidance from others who were walking a similar path. We found families along the way whose “normal” was our “normal.” I looked up to those who were further along in their journeys and confided in them for advice and an ear to listen. It’s those Mom’s I met who would become some of my best friends and who would be like family to us. Our lingo was different from most Mom’s who had children the same age as ours. In playgroups we stuck out like a sore thumb, we tried to fit in but the differences between our children were too different. While their children were meeting milestones, learning new skills, taking their first steps, our children were undergoing procedures, meeting new specialists, and getting new diagnoses. We slowly faded away from gatherings with typical children and clung to families who walked in our same shoes. It was just easier this way. And it was comforting. It felt familiar and we didn’t have to explain things like why we had to bail out last minute for get togethers or why we were crying or frustrated or tired from appointments and therapies. We grew so close to these families. We trusted each other with our children and felt safe. I know that this same connection is found between other adults in our phase of life. Adults with healthy children of similar ages, attending school together, on the same sports teams, having playdates and sleepovers and out in the community together. But a big difference between our families and theirs is that their families will probably not experience the losses of so many of their childrens friends at such young ages. In Silas’ short life he has already lost two of his very close friends and we are now experiencing the heartache of one of his friends that has unknown time left with his family. It’s eye opening, and its scary. It’s unfair. But it has taught us to really embrace every single day we have with our son. When I get angry or sad about the hand we have been dealt, I turn to writing, because it is the only way to really express my thoughts and feelings. Today I am writing to acknowledge these thoughts, in the jumbled mess that they are. This phase of our life is not what I had hoped for our family, it’s tiring, and frustrating and unfair. There are countless positive things I could write about this life, and I try to embrace the triumphs and focus in on our happiest moments together. But there is also the need to express the feelings that aren’t always positive. It’s important to recognize that this life is hard. And unfair at times. Reality is, our time with Silas is also unknown. And being close to these families has shown us this. We walk similar paths as them. And we could easily end up in their shoes. It’s scary, and the more loved ones we lose the harder it hits. I am thankful that we’ve found these families and our children have grown up together and crossed paths. But tonight my heart hurts extra for those we have lost, for those we will lose, and for our own son who has a harder path to walk then a kid his age should. Tonight as I reflect on this phase of our life we are in I am trying to remember to never give up, to hold onto hope and embrace every moment we have with him.

​Prayers, light and love to those who need extra tonight.
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8 Comments

I refuse to be a statistic

3/25/2017

4 Comments

 
Silas was diagnosed with Spastic Quadriplegia Cerebral Palsy when he was around 7 months old.

The visit went like this.

We entered the room, sat down and were given his diagnosis. The next thing that came out of the neurologists mouth was:
"The divorce rates in families with special needs children are really high..."

Really? Yes...really.

Well, we told him thank you but we weren't going to be a part of that statistic. 
Not without work though...it's damn hard. And really, he's right. The divorce rates are high, because this life is really freaking hard. But please, be more sensitive to the fact that you just gave a life changing diagnosis to our family, can't that little speech wait until the next visit?

Anyway...I'm focusing on this tonight because today has me thinking how lucky Matt and I are for making it this far. Because during times like right now, where you just pass each other by, exchange details about your child, relieve each other from shifts in the hospital, and go hours without talking because you want any excuse not to have to replay the "shift" you've just had and the pain you've had to see your child endure just to let the other person know how it's going...

When you live a life like ours you don't get many chances to make time for each other...you get to trade off shifts, you get to sit in silence not knowing what to talk about because you can't stop your mind from running to think about anything but the pain your child is in. You get to tell each other how you are sorry for being so distant and disconnected but that you love them and hope they can remember that through everything thats going on. 

Matt and I didn't get a honeymoon. We don't get to vacation. We don't get to spend much time together and definitely don't get to spend much time together as the three of us because one of us is usually needing a break. We got the time before the brain injury. And the time after has been forever changed. We mourn the loss of what our family would have looked like. We mourn the loss of making memories together that don't involve pain and stress, and tears and hardship. How are you supposed to remain strong together in this life? I'll tell you it's hard and I don't have the answer because were simply trying to just survive this right now. But I guess I just feel lucky were still in this together.

Tonight my heart just hurts for my family. I want to acknowledge how hard this is. How lonely it feels. And how painful it can be. 

I know we will get through it, because we always do, but i'm just hurting right now and I needed to write about it. Just for one night I wish Matt and I could enjoy what we used to have...

I want to thank my family and friends for letting us have time together, and helping us try to be able to enjoy each other, even if it's just to sit down to a dinner and ask the other person "when do you think this will get easier?" "what do you think is wrong this time?" "why did this happen to us?" "what did the doctor say?" or to even just sit in silence with each other.

I hope we get to a point where we can someday fully experience a glimpse of what we thought our family would have looked like, what our marriage would have been. But until then our life is what we have and we'll make the best of it, and remain strong together. 

Brain injury has taken a lot from us, but it will not break us apart. 

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4 Comments

A Vicious Cycle...

3/24/2017

3 Comments

 
I OFTEN TALK TO MYSELF, NOT OUT LOUD, BUT IN MY HEAD. I FIND I DO THIS AFTER I EXPERIENCE A ROUGH DAY, A TRYING TIME. I ALLOW MYSELF TO WRITE A STREAM OF CONSCIOUSNESS IN MY MIND, AND TONIGHT I WILL LET YOU IN. 

PARENTING A SPECIAL NEEDS CHILD CAN PUT YOU INTO A VICIOUS CYCLE.

A GAME YOU PLAY OVER AND OVER AGAIN IN YOUR MIND.

FEELINGS YOU FEEL THAT ARE HARD TO ADMIT EXSIST...

BUT REALISTICALLY KNOWING YOUR CONSTANT POSITIVITY AND PATIENCE CAN ONLY LAST SO LONG. BEFORE YOU WANT TO CRACK. 

THOUGHTS CIRCLE, AS ANXIETY BUILDS.
I AM SAD THAT HE IS IN SO MUCH PAIN.
I AM MAD THAT HIS SADNESS IS DRIVING ME CRAZY.
I AM SAD THAT IM MAD THAT HIS PAIN IS MAKING ME SO ANGRY.
BECAUSE HE CANNOT HELP THE PAIN HE FEELS.
HE ISN'T IN CONTROL.
I CAN CONTROL MY EMOTIONS, BUT WHY DO I FIND MYSELF WANTING TO EXPLODE!
ITS NOT HIS FAULT.
WHO CAN I BLAME?
I SHOULN'T BE FEELING THIS WAY. I SHOULDN'T BE GETTING UPSET OR RAISING MY VOICE AT HIM TO STOP CRYING.
I TELL HIM OVER AND OVER AGAIN HE IS OKAY, YET I KNOW HE IS NOT AND I'M LYING RIGHT TO HIS FACE.
BUT I JUST CANT STAND TO HEAR THOSE SCREAMS AND CRIES OF AGONY FOR ONE MORE SECOND.
I JUST WANT HIM TO BE QUIET!
I AM ABOUT TO EXPLODE.
I NEED TO BREATHE.
ITS OUT OF MY CONTROL.
STEP AWAY.
INHALE.
EXHALE.
RESET.
AND START ALL OVER AGAIN.


...BECAUSE ON THIS JOURNEY THERE IS THE GOOD, THE BAD, AND THE UGLY. AND TODAY FELT LIKE AN UGLY DAY, AND SOMETIMES YOU JUST NEED TO VENT. 
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3 Comments

Let us Suffer Together  

1/19/2017

2 Comments

 
It's been one of those days. Scratch that. One of those weeks. 

As most who follow our journey on Facebook know, the past year has been HELL for us. For Silas. Right before Christmas we found the answer to his extreme irritability. No stomach motility. A paralyzed stomach. Can you imagine not being able to process food? Well this is Silas' reality. We thought we found the answer. And I think we did, for the most part. Until this past week. The irritability has slowly started to rear it's ugly head back into our lives. I thought perhaps it was a fluke thing. Something that would subside. Maybe an ear infection. Nope. Maybe a cold. Nope. Maybe a....well lets face it the guessing game goes on and on and on and on, it's truly "the song that never ends" and my least favorite thing about parenting a non-verbal child. The damn guessing game! Can't they just invent something that reads these kids minds, are we not there yet in this crazy technological advanced world! Ha! Wouldn't that be amazing. Until that life changing invention happens we are stuck in this guessing game. So when his irritability started back up I started my list of possible culprits. it's a trial and error process with Silas, or any non-verbal medically severe child. It's been about five or six days since the irritability started and the irritability has gotten increasingly worse, and today I feel like we entered "the worst" of it. A day full of non-stop screaming, angry kicking, crying, mood swings, biting hands, arching stiff body, swatting at his face, frustration, tears, angst. Survival mode. I think I have PTSD from almost of year of him being like this, and today it hit me hard. I thought for a second, what if this is just him. What if this is our new normal. No. It can't be, right? We played one of my favorite games today. (Enter Sarcasm) The game of doctor phone tag! You know the one where doctors and specialists pass your problems off to each other, and waste your entire day. The game where you feel like you are talking to a robot all day. "You have reached the nursing line for....." Ohhhh...this fun filled game we play. Is it so much to ask to speak to a human! I get it, they need to have a system for when people call in, but can we get some kind of free pass to pass go and get right to the source?! Is that so much to ask. Yes. Yes it is. So as usual I played phone tag all day only to get what I asked for at the very start of the day, to see his PCP to start ruling out our list of "what ifs" and try to find an answer. We were running late to the appointment, and they threatened to not see him. Excuse me. NO. You will see him. We are ten minutes late for our 30minute appointment. Im seeing the damn doctor. Thankfully we walked in and got into our appointment with no issues, because I was ready to unleash the dragon on them! Ha! Well as suspected, ears looked fine, actually they looked "great!" Great. Or is it, can the answer just be a damn ear infection ever, at least there's an easy fix for it! No. Not with Silas. His mouth looked fine. Of course. We decided to check his urine to rule out a UTI, knowing it's probably not that. Let's at least rule it out. And finally came to the decision that we would get an x-ray taken of his abdomen to check and see if his GJ tube was in place still and not dislodged. Well of course it was the end of the business day and they won't even be able to read his X-ray until tomorrow. And when I say tomorrow I mean probably by late afternoon after I talk to all the robots again. Because god forbid they call me first thing to ease my mind. Can you sense that I am a little bit hostile? Yes. you are correct. Because when you are five and a half years into this journey, you, too, would be hostile about how we are treated sometimes. Don't get me wrong, I am so thankful for specialists, and doctors, and hospitals, but the system they have for communicating with patients is completely screwed! So now we wait. We are resting his stomach overnight and just running pedialyte through his tube, and at a very low rate incase he is backed up at all, or not hydrated enough, or, or or. That's our plan for now. but really the whole point of me writing this all out is to tell you, you are not alone. We are not alone. There are thousands of mothers and fathers out there parenting complex kiddos like Silas. And sometimes we just need to know we are not suffering alone. To the Mother on a forum that I visit daily on Facebook, I get it. I know what it's like to have your child scream every single time they get in their carseat. I know what it feels like to fall apart and beg to some higher spirit that this crazy life will get easier. I know what "survival mode" is, and I know what sleepless nights and appointment filled day's are like. I hear you. All of you. You are not alone. Let us suffer together.

-A tired Mom 
2 Comments
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    Author

    My name is Melly Brown. I am the mother to Silas, who has profound special needs due to a brain injury at birth. I'm here to blog about the nitty gritty, raw truth about raising a child with special needs. The highs, the lows, the ups, the downs. I will review some of our favorite products, share the secrets of how to navigate this special needs life, and vent about some of our toughest days, and most rewarding as well. Join me in my journey, I do not walk this life alone, and would like to spread awareness for all those out there who live this crazy tough special life! 

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