brothers

a good friend of mine turned me onto a quote..."worry is interest paid on a debt you dont owe" (or something close to that). i try to remind myself of that on a pretty regular basis.

but yet i worry. one of my worries is whether dom and vincent will have the kind of brotherly relationship i had imagined for them. being an only child myself, much of that envisioned relationship was based on television or seeing family friends...but i just worry about their relationship...fully recognizing that it will occur independent of anything that i do and that i have little control over it.

interest on a debt you dont owe.

so in the midst of that worry something like this happens. to set this scene up, the boys are sharing a lollipop here. i found out that little brothers can hold their own, regardless of impairment.

vincent doesnt want to share (naturally...i mean who would?) but gommy keeps coming after him. they bicker like little brothers do and should. and dom comes after his big brother like little brothers do and should.

its stuff like this that makes me realize how little control i have...and how wonderful that is. that my worries dont mean anything. that really what i do have are two beautiful children who love each other and whose relationship will grow and thrive in it's own unique beautiful way...and soon there will be three beautiful children whose will develop a unique relationship inclusive of individual abilities, inabilities, emotional quirks...the whole nine.

and while i'm here, i have to brag a bit on my eldest. you guys...he is such a great big brother. the other night he was hanging with my mom. dom was talking/laughing himself to sleep in the other room, and my mom asked vincent "do you wish gommy talked to you more"?

vincent answered in the way he always does. he said "gommy talks. he just talks in his own way. someday he'll be able to talk like me and i'll understand him better". and with that it was done. vincent had taught my mother that talking isnt necessarily the only form of communication between brothers.

vincent is the kind of child that starts singing softly to dom when dom starts crying. vincent is the type of child that immediately runs to tell me when dom is in any sort of trouble. vincent is the type of child that contantly asks D how his little sister is doing. vincent on numerous occasions has tried his darndest to take charge of a situation and show gommy just how to do things like play with legos or play games on his ipad.

so while i was over here worrying about their relationship...i should have been having some faith in the fact that vincent and dominic both are just good kids. good kids who love each other. and maybe their interactional style might not have been what i expected or dreamed of...but it's somehow surpassed all of that and both of them are going to be better for it.

worry is interest on a debt you dont owe. my kids continue to teach me that lesson.

life comes at you fast

well...our little story had another wrinkle thrown in. many of you know that dom's beloved caregiver found out she has an aggressive form of breast cancer back in january (happy to report that she is fighting like hell--and winning!), leading to us needing to find care for gommy.

the temporary solution was D's mom shouldering all of the burden and coming in to help us on a weekly basis for close to 5 months. words cant describe what she did and continues to do for us. she is our hero in all of this.

the longer term solution was to work with an au pair agency to find someone to come in and take care of the kids...so that's what we did. and it worked for a while.

but it stopped working. circumstances out of our control (and ones that are terribly frustrating to us) have led to us being without childcare again on a temporary basis (who knows what temporary means).

fortunately for us d and i are pretty resilient, and spent time this week working on steps 1A through 1E...until we realized that we should probably wait to see what happens with those before we move on to step 1F. we will get through this. we will survive this. i dont know if those two sentences are me reflecting on the situation or if they are a mini pep talk...maybe they're some combination of the two.

but we are back to square one. and it's frustrating and a bit disheartening to be here.

i told my mom about this yesterday and she said "well, just remember what you've been through. you've been through news about gommy and survived that. you'll survive this"...which at first took me a back, but later i realized is completely true. this aint sh*t. we'll get through this.

i dont know what the solution is going to be. not sure if we're going to go back to the au pair agency, or if we're going to look at  in town solutions (naturally we are looking at both right now). i also went to a daycare to drop a deposit for didi (daddy's nickname for his little girl), and while i was there i asked about whether they had ever had kids with disabilities in their facility. the person i talked to paused before giving me an answer....

pauses arent very encouraging.

and the answer was that they could work with us to figure it out. that they have had kids with down syndrome and autism, but no kids with mobility issues. so they'd have to start from scratch. the thing that scares me about that is that daycares are typically organized by ability--meaning once a kid starts walking they move out of one room. once they start doing other things they move into a different room.

dom has the intellectual needs of a 2.5 year old but he's stuck in the body of an 8 month old. that combo is not good for daycares who classify based mostly on physical ability. i'm sure the system works, but the system was designed for neurotypical kids and therefore we just dont fit into it.

but we'll figure that out too.

someday we'll be able to look back on this and shake our head with a smile and say "man, you remember that? remember how stressful that time was? remember how we talked about moving or quitting jobs? how silly was that?"

we'll get to that point someday. we're not there yet today, but we'll get there someday.

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.