two years ago today

Two years ago everything changed.

I cant say that tuesday march 26 2013 started off like any other day...i mean afterall we were in austin waiting to get an MRI at the urging of our neurologist who wanted to figure out exactly why dom was so tight. but really while we were nervous, we were somewhat confident that everything would be relatively ok. 

The day started off on a vigilant but confident note. 

The day ended with a diagnosis that we didn't quite understand and a future that (at the time) seemed 100% uncertain. We didn't lose anything tangible that day--if anything we gained information on what made dom himself--but we lost the intangibles. we lost predictability. we lost the confidence in what we were doing as parents. Fundamentally we lost the assurance that everything would be "ok". 

But here we are two full years later and things are more than ok. In fact things are fantastic. Things are moving along at light speed. Dom is in about 8 hours of therapy a week and is on the verge of being mobile (either by walking or crawling). He's struggling with words...we had some and strangely lost them...but manages to communicate his needs in a way to make the folks who know him understand. But more than anything he's a lanky ball of energy and fun.  

I wish I could go back to that moment where D and I were sitting in our car after meeting with the neurologist. We were in the parking garage just sitting in silence because we didnt have the words to reassure ourselves that everything would be ok--much less reassure each other. I wish I could go back and tap on the window and just say "hey, you can do this. you have to do this. your son is awesome. now get busy on learning who you need to be as a parent. get to work.". but maybe that message wouldn't have been heeded at the time. 

maybe I need the perspective of two years having passed to be able to think that. 

I spent a lot of those first weeks post-diagnosis resenting Dom's diagnosis. I resented PMG. I resented cerebral palsy. I was there to fix it. I was there to figure this out. But slowly I realized that PMG and CP are what make Dom who he is--yet they are not the sole definitions of who he is. They're just designations of how his brain looks. And I love everything about this kid....his looks, his laugh, his tendency to pick on his brother, his inability to go straight to sleep instead staying up laughing for up to two hours, his brain deformities, his smile, his long eyelashes, his constant desire to do better and to be better and the levels to which i see him push himself in therapy. i love every single little bit of it with every fiber of my being and to the deepest core of who i am. 

so in hindsight its seems silly to think that at one point in time i was afraid of cerebral palsy, because that means i was afraid of who dommy is. 

but i don't want to forget those emotions. i don't want to forget how sad we were, and how much we subconsciously [unfairly] mourned for his future [that has yet to be written so doesn't matter] i don't want to lose that because those lows make me realize just how high we are right now and just how good life is. is it what we expected? absolutely not...but it's better. it's made me stronger. it's made me a better father and has added an infinite amount of clarity to who i am and who we are as a family. 

i wouldn't trade this life for anything. its utterly exhausting--don't get me wrong there--but i wouldn't trade it for any damn thing in this world. 

two years ago today D and I cried ourselves to sleep. 

tonight we'll lie in bed and watch netflix as we listen to dommy laugh himself to sleep.

Survival & Daycare

i worry about how tough gommy needs to be sometimes. i know that's an inane thing to be concerned about given how tough he already is, but i recognize that he's a disabled kid living in an ableist world. he needs to be able to stand up for himself, and as a dad i need for him to be able to do that. it's one of my bigger fears.

but let me tell you. you dont mess with gommy.

our beloved day care provider has shared with us a couple of stories...once where one of the other toddlers climbed on gommy (as kids tend to do) and another where one of the kids took gommy's sophie the giraffe (which by the way is the most overrated kids toy ever).

in both situations gommy yelled and fought back. didnt really cry, but let the world know that he had been wronged. then apparently the rest of the day he'd look at the other kid with an angry face and occasionally send out warning yells to him.

straight gangsta. maybe i dont need to be so worried about him.

and secondly...daycare is a hard thing for special needs parents. we are blessed beyond recognition that our current provider is as wonderful as she is. in fact she's not really a provider, she's really family. but the truth of the matter is that gommy is growing up, and just like vincent, we need to think about other arrangements.

in september gommy will start a half day program at the local elementary...with a neurotypical kid it would be as simple as just finding him a half time day care setting, but gommy essentially has the physical needs of a kid much younger than him so your normal day care settings just dont work. same thing when he gets to school age...we're going to have to figure out summer care because, again, we cant send him to day cares because they individual classes are categorized by ages and not necessarily abilities (if that makes sense).

fortunately D and i are problem solvers and we will figure this out, but it's another example of the winding and unknown path we find ourselves on...that with vincent questions were answered based on recommendations from others or simply by observing. with gommy we have to strive to do our best with multiple plausible scenarios.

but i suppose that the unknown can either be framed as a stressor or an adventure with the possibility of a magical ending. i prefer to look at it as the latter.

the myth of the "worst case scenario"

i am convinced that the concept of a "worst case scenario" is a artificial construct designed to give us a weird measuring stick to figure out how emotional we should be about situations. nothing is ever the worst case scenario, and when you actually get faced with the supposed "worst case scenario" you've been dreading you kind of realize that it's not all that bad and everything is and will continue to be fine. might  not be true for everyone, but it's true for us at least.

"worst case scenarios" we've faced so far:

1) dom having CP when we thought it was just some tightness
2) dom having bilateral diffused PMG instead of the manageable unilateral
3) and then yesterday finding out that dystonia is more of an issue for him than spasticity...when spasticity could be solved by the SDR surgery...where as dystonia is kind of a new ball of wax. 

but in all of this process of figuring stuff out, dominic has been the same. it's all just been a matter of getting to know him and what makes him...well him. he's been the same happy kid. the construct of a "worst case scenario" has been all us. he's been the same happy kid doing big things and learning how to do even bigger things. 

so when we're navigating this sea of uncertainty...really dominic is our compass. and that's pretty neat. 

so SDR is officially off the table for us for now...and maybe permanently. but that's ok. our job has always been to make dominic the best damn dominic he possibly can be...as we do with vincent and as anyone would do for any of their kids. and really now that we know it's dystonia and not really spasticity...we can develop a plan. we can figure things out. we can start teaching him how to manage that. 

so maybe the "worst case scenario" is actually kind of a good thing. i strongly believe that nothing happens by accident...that everything is divinely ordained. and for as sad as we were when we got turned down for SDR...we are just that amount of relieved that the law of unintended consequences didnt come back and bite us. 

so much of this experience/journey has been a matter of figuring things out and exploration. wondering whether we are doing everything...and i mean EVERYTHING that we can to help gommy excel at whatever he wants to excel at. and so much of it too has been about checking our own egos at the door and making sure to keep his needs, and his goals, and his dreams out front. 

besides. does anything else really matter in the grand scheme of things we're you're talking about this level of cuteness? 

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!