Being a Special Needs Parent=Awesome

I have to share something.

Yesterday Gommy had hippotherapy. He's been three times, and each time things have gotten better and better. The first time he got on the horse he screamed almost the entire time. The second time less screaming--but still some screaming.

This time no screaming. In fact not only was there no screaming, there was sheer delight on his face and a huge amount of fun. He did so well that the therapists decided to end the session because they knew he'd be tired...not because he was tired...but because he was going to be tired. He was still doing fine but they were worried about how tired he'd be...even though he was genuinely happy. He rode a horse for 45 minutes straight. 45 MINUTES YO.

And to give you an idea of why that's a huge deal, 45 minutes on a horse is basically the best abdominal workout he's ever had. He had to stabilize his core. He had to hold his head up (granted he did all that with support from the therapists and their assistants), but he had to do so much work...and he nailed it. Absolutely nailed it.

Being a special needs parent is tough, but man there are moments of sheer brilliance and fantasticness. The best part of the entire experience is that you get to learn with your kid about what they are capable of...you start off with this perspective of "well I'm not sure what he'll be able to do" and then you find out "HOLY ISH YOU CAN DO THAT? THAT'S FREAKING AWESOME". Milestones are no longer boxes on a checklist. They are mountains climbed and worthy of huge celebrations. Tiny little things like him kneeling down in front of a toy, holding himself in that kneeling position and playing with it become the best damn things that you've seen all day.

The lows might be low, but my goodness. The highs are so incredibly incredibly high.

I'm a better parent because of Gommy. I look at Vinny and I marvel at everything that he does. I marvel at how well he's doing and how happy he is. With all of the milestone questions at a doctors appointment you sometimes forget just how big of a deal things like talking in sentences, and eating table foods are. You forget the magic associated with crawling/walking stuff like that--I mean your kid taught themselves to move on their own!! That's REMARKABLE! But in those appointments they are just boxes on a checklist.

Being a special needs parent is wonderful because the boxes on those checklist represent hours of work, tears, and frustration. But damn when you get to check one off holy hell it's great. Which means that when you check them off for your other kids internally you have fireworks going off as to how fantastic it was.

Maybe riding a horse for 45 minutes isnt on anybody's checklist...but that's the beauty of it. The checklist doesnt matter because while the paradigm on special needs might be "what might he not be able to do" this is a glowing example of "holy crap I never knew he could do that!"

Being a special needs parent is the best. The absolute best.

All in Good Time

Dear Singhin' in the Rain,

It's not us, it's you...

Sincerely,
SDR

And just like that, our dreams are crushed again.  Maybe not crushed, but at least crumpled with a little bit of gum stuck to the bottom.  We didn't get a straight up "no", we got a, "well, maybe, but let's wait a year in case that virus lurking in your son's brain decides to cause some more damage". So yes, they're saying there's a chance.

Patience is a virtue.  It's just not mine.

Waiting a year for something I know would change my son's life feels impossible.  I can't even wait until mid-December to give my kids their Christmas presents.

I tried, Gominic.  I've got nothing else up my sleeve right now.  It's all you from here.  Show us with that bad-ass little attitude.  Show us that you don't need SDR right now.  Show us that you can do whatever you want to do.  Help us keep that faith that comes so easy for you.

 

A two parter

Two parts to this blog. Neither one of them overly long, and neither one overly important. But two parts. Two movements if you will. This wont be an overly impressive entry, fyi.

Movement I: Interpreting the Messages

I've never been one to think that God speaks directly to me. I think that God's speaking all around us and we interpret the messages based on our personalities (which are divinely ordained). So when D heard the "when I die young" song, I don't think it was God talking directly to her or effing with her (although the Divine can be snarky at times), but rather I think that God got a kick out of how she interpreted it, and it just happened to be the thing that she needed in that moment.

This year I've been living by a quote by Kirkegaard, "The function of prayer is not to influence God but rather to change the nature of the one who prays". Stuff is going to happen and it's my job to interpret it using the innate abilities that God gave me

Movement II: The message

So at the tail end of the no good very bad rotten week that we had where we were sad for no reason whatsoever, I heard a song that I've heard quite often...but I heard it as if I was hearing it for the first time. Here it is:

Below are the lyrics:

"Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave (wave) is stringing us along
Just know you're not alone
Cause I'm gonna make this place your home

Settle down, it'll all be clear
Don't pay no mind to the demons
They fill you with fear
The trouble it might drag you down
You've get lost, you've can always be found

Just know you're not alone
Cause I'm gonna make this place your home"

Did God somehow plan for that song to come on in that moment on Pandora just for me? I dont think so. But God did help me to hear it for the first time...and the message was something I needed. 

Being a special needs parent is my home. It is my comfort zone. It's what's natural to me, which is why being sad is just silly given how much I prayed for that child to come into our lives. Being said will happen on occasion, sure, but the fact is that my goodness there is so damn much to be happy about when it comes to my home. There's so much joy, there's so much laughter, there's so much activity and busy-ness...and moments of sadness take me away from those. Sadness is a valid emotion, and it's ok to feel sometimes, but there's so so much beauty in our every day reality that no amount of sadness can overcome. 

So yeah, in that moment the trouble it did drag me down. And I was lost but, I did end up being found. 

And in the future I will do a better job to pay no mind to the demons...because all they do is bring me down and waste my time. Life is too damn good to be brought down by silly thoughts. This is my home and I wouldn't change it for anything 

Paralysis

Paralyze: par·a·lyzeˈparəˌlīz/cause (a person or part of the body) to become partly or wholly incapable of movement.
"Mrs. Burrows had been paralyzed by a stroke"

synonyms:

disable, cripple, immobilize, incapacitate, debilitate; More

render (someone) unable to think or act normally, especially through panic or fear.
"some people are paralyzed by the thought of failure"

synonyms:

immobilize, transfix, become rooted to the spot, freeze, stun, render motionless More

bring (a system, place, or organization) to a standstill by causing disruption or chaos.
"the regional capital was paralyzed by a general strike"
synonyms: bring to a standstill, immobilize, bring to a (grinding) halt, freeze, cripple, disable

Paralyze can have very different meanings.  This blog involves both.

This week we started a very important process.  We filled out our initial paperwork to see if Dom had a chance at being a candidate for Selective Dorsal Rhizotomy (SDR).  We received a response back and have a long packet full of required x-rays, brain scans, videos and evaluations to fill out.  This is THE procedure for CP patients. We've connected with many individuals who have had this surgery and most say it is life-changing.  I've seen kids go from barely walking in controlled environments to running triathlons. We have our hope focused on this.  Nice thoughts, prayers and sending general good vibes in our direction is appreciated.  Haters need not bother.

Why is this paralyzing, you ask?  Well because it is.  This surgery is literally paralyzing.  (Legal disclaimer: Here at Twisty Inc, we consider ourselves medical experts and take medical information given to us and provide our own interpretation.  We do not esteem to represent the Medical Community in its entirety, but we totally could. Information provided here is for informational, expert and entertainment purposes only; all information is deemed factual by our own interpretations).  With SDR, they cut open your spine, untwist things called Dorsal nerves, use electro-stimulation to determine which nerves fire constantly (causing the spasticity), and sever those nerves.  This surgery can eliminate or reduce spasticity in legs permanently.  Yes, I said eliminate.  If we eliminate spasticty, what do we have?  Um, feeding issues?  Dude can live off of smoothies for the rest of his life.  

Of course, it doesn't eliminate spasticity in his arms, but sometimes it does have the effect of reducing it. Who needs high-functioning arms when you are as good looking as he is.  We will just teach him to get his girlfriends to do his homework.

We have been researching this procedure for a year now, but they only evaluate kids starting at 2. With a month left until Gominic turns two, we hope to mail off his packet on his birthday, just to send out extra good vibes.

Of course this surgery is not without risks which is the paralyzing part for us.  This surgery can cause impotence and incontinence and probably other things that I don't remember or just chose to selectively block from memory.  At this point, we've become numb to risks.  Our life gives new meaning to "no pain, no gain".  We recently had our not yet two year old injected with Botox.  Risks for Botox include ending up on a breathing tube (though I'd gladly take these risks myself for a little wrinkle reduction).  Three times a day we give him an oral based toxin that reduces his spasticity.  Side effects there can include seizures (which we are already a high risk for) and severe hallucinations.  And if you know Gommy, the last thing we need is Gommy trippin' like he's on 'shrooms.  We've been in a YOLO (or YLOO for you grammatically correct types) state of mind as far as Gommy's treatment goes, and it has worked out so far.  No pain, no gain.       

Because of the risks, if selected, we will go to St. Louis to have the surgery done by THE doctor, Dr. Park.  He has refined the procedure and has not had one negative outcome.  He has been performing this surgery since the 80's, probably while listening to things like "Manic Monday" in the operating room.  

So here we go friends, because shit just got real.  And we're not turning back.  Wish us luck!

All The Tears

This week has been a bastard which is likely why you are hearing from us twice, and it's only Tuesday.  This week shouldn't have been so bad.  Nothing has happened.  Yet everything has happened, at least in our heads.  That's the thing about being a special needs parent, you can be walking around all fine in your "normal", which is far from anything that could be considered normal and something just gets thrown at you that F-s up your world.  For this reason you never go there.  The place that I have refused to go during this whole journey.  The place I was smart enough to avoid even in my first hour as a special needs mom.  The place we brush past every time we mourn the loss of another child in our support group, but we never go there.  To go there means you won't survive this journey.  There is a place we know exists, but it is not for us to visit.  If we go there, how will we ever get back?
       
It started off with a simple blog.  There was one statement "I don't know how he survived" that a doctor made in reference to a PMG patient having seizures.  For some reason this just hit me hard.  At any given point, I am completely aware that Gominic has a 95% likelihood of seizures and these are most likely to start before he turns 4, though he will never outgrow the risk. I know that if his seizures happen, our lives will change dramatically.  I know we may be in the hospital for a long time.  I know we may have to move to Colorado, where medical marijuana, which is very effective in controlling the types of seizures he is likely to have, is legal.  I know all these things, and I am prepared for them.  I also know that kids die from these seizures.  But I don't put these things together.  To do so, would be to go there.

Except just this once, I allowed myself to go there.  I mourned for my son.  I mourned for the fact that I may outlive him.  I cried every second I was by myself.  I ugly-faced cried every day in the shower.  YOU. CANNOT. GO. THERE.    

Then came the video "Cordas".  If you haven't watched it, you should.  It is the most beautiful story of a friendship between a little boy with Cerebral Palsy and a little girl.  It reminded me of Gominic and his very special little girl friend.  But the boy dies in the video.  It was like one big kick to the grief crotch.  And I was already THERE.

So I mourned some more, and Big Poppa mourned with me.  We wondered how to get out of THERE. We thought about the reality of our situation, and we cried.  This is why we can never go there.  How do you think these thoughts and go back to real life?

After we had cried all the tears and said the things out loud that we have never wanted to say, we knew we had to leave that place.  After all, everything is the same.  This whole scenario is just our fears for the future.

So we decide to muster every bit of strength we have and leave that place.  Big Poppa decided to put some Pandora on to help, and what song do you think started playing?  IF. I. DIE. YOUNG.  Ok, now you've got to be f-ing kidding me!?

But we just laughed.  And we haven't stopped.  Because we know it was a sign.  God has a sense of humor just as inappropriate and f-ed up as ours, and He didn't want us to stay in that place.  He knew just how to reach us.

  

Monsters

Monsters are fictional beings that exist only within your head. They aren't real...but even though you continue to tell yourself that they aren't real, they still scare you. Can you do anything about monsters? Not really...you just have to hope if/when they do come after you, you're brave enough and strong enough to take them head on, which you probably will be. So in that sense the real impact of a monster resides in the hypothetical. Monsters are more about psychological warfare, than actual warfare.

We don't admit it very often, but being a special needs parent can be difficult. Parenting in general is difficult, but there are a few extra doozies that come along with our current journey. The frustrating part of them is most all of the difficulties are self imposed. Sure it's a pain to drive to Austin regularly for appointments, but road trips with our boys are fun as hell...so really those trips are a win for us. I'm more talking about the difficulties associated with seeing neurotypical kids younger than Gommy who are doing more physically than he's doing. More about the concern for the future and what not.

And all of that is just crap because Gommy doesnt care, and he's the one that matters! Why should we even for one second think that our life is difficult when we are 100% able living in an ableist world when Gommy himself has a YOLO attitude about everything that he encounters and approaches life with an illimitable amount of zeal and happiness?

Therein lies the rub. We take our cues from him, but we have our quiet moments too. That's where the monsters come in.

The main monster...the one that terrifies us to no end and leaves us shaking and on the verge of tears is the possibility of seizures. We don't often indulge ourselves in the realm of hypothetical, but the thought of seeing our son going through a seizure is breathtakingly scary, and something we cant help but think about. Maybe it's a method of self-preservation...that somehow if we think about it now we'll be better equipped to deal with it when it happens. But we know that's a lie. We wont be ready. We'll simply have to be brave enough and strong enough if/when it happens.

And even now I'm crying in anticipation. For no reason whatsoever. Just out of fear.

There's a possibility that Gommy might not have seizures. He might defy the odds there. We might not ever have to come face to face with this monster, this gargantuan fiend that we dont know if we can fight off. It might not ever happen, and we're doing what little we can to keep it from happening through his diet, sleep patterns etc. We had the sleep study done and for a 48 hour period in October of 2013, Gommy was not having any seizures. Zero. Zilch. Nada.

But really we have no control over whether they happen. And as routine and normal as today is, the reality is that tomorrow might be completely different. And I know we are strong enough to handle it. I know that Gommy is strong enough to handle them. I know that through prayer we will come out unscathed on the other side.

At least I think I know that.

But that's the thing about monsters. They feed on doubt and possibility. They take up space in your mind and you build them up to be so big that they seem unconquerable.

We're strong. We're powerful. We might not know it sometimes, but no monster can ever defeat us...and we need to continue reminding ourselves as much.

Through the Looking Glass

Hello….Are you there Burberry?  It’s me Twisty.  I know we don’t talk much, but lately I’ve needed you and you haven’t been there.  I’ve been searching, and praying, and asking others for advice.  But it seems nobody makes designer baby glasses.  Don’t you care?  Has what we shared meant nothing to you?  Why would you leave me at a time when I need you the most?  Will my son be subjected to wearing generic looking frames until he can grow into your children’s line?  DO YOU EVEN HAVE A CHILDREN’S LINE?!?

A year ago we had just barely received Gominic’s diagnosis, and we were pretty down.  We were searching for answers that no one could give us.  Will my son walk?  Will my son talk?  I did countless internet searches and sought the advice of strangers who had walked this path before.  We flew him across the country to the best specialist in the world, all in search of answers.  We soon realized that only God had the answers, well, God and Gommy, but neither was willing to talk.  At that point we made a decision, a decision to be happy.  At that point we quit mourning Gommy’s condition.  I blogged about changing our attitude and perspective, how I would use Google for more valuable information such as finding the perfect designer baby glasses.  We changed our perspective and never looked back. 

After a year of being a special needs mom, I realize now I was naïve.  This past year brought more than I could have imagined.  And the thought of baby designer glasses seems a little silly now.  Not from the perspective of not being necessary, because this year has taught me more than ever that cuteness is next to godliness as the saying goes.  No, it seems silly from the perspective that Burberry doesn’t understand what raising a special needs child is like any more than Jon Gosselin does.   They don’t realize that some special needs moms are just as shallow as ever and have learned nothing of value from our "higher calling".  And quite frankly choosing from two different shapes (and admittedly 20 different shades of blue) to pick out my son’s glasses is unacceptable.  You would have thought we could have at least gotten the rectangle ones, but apparently those are only deemed acceptable for 3 year olds.  Seriously, who is in charge of these things?  Admittedly, he does chew on his glasses more than he wears them, but does that mean he shouldn’t look good while chewing on them?!  Where is the ADA board when you need them?  This feels a little discriminatory.  

This year has taught us that the world doesn’t know what we are going through, but they are trying to understand.  Our city recently started planning an all inclusive playground  designed for special needs kids.  My son will not remember living in a world where playgrounds were not designed with him in mind.  The world wants to understand, and it gives me hope for my Gominic’s future. 

So, Burberry, if you are out there…it’s me Twisty.  I would like one pair of ombre’d baby designer glasses in small.  And if it’s not too much to ask, I’d like them to look a little ironic.  My Gominic is nothing if not ironic.