trying

This summer we went to Morgans Wonderland. In case you’re not familiar with the place, Morgans Wonderland is an inclusive amusement park designed for folks with disabilities. We went specifically to check out their new water park, and everyone had a good time.

I had one experience there that will stay with me for a long time. Dom and I were over in one area of the park walking through some sprinklers and we happened to walk by a mom wheeling her daughter (who had some varying level of paralysis) through the same water features. The child didn’t seem to be reacting to the water all that much…and at one point the mom looked over at me, smiled, and said “I don’t know whether she’s enjoying this”

Its hard for me to define or describe the tone in which she said it…because on the surface that seems like a bit of a downer statement…but it was said with so much hope, and so much dedication, and so much love. The follow up to “I don’t know whether she’s enjoying this” was an implied awkward “I want so bad for her to enjoy this…and I’m going to keep trying things she might enjoy”. There was so much effort in what she was doing.

I think about that often, and I think about it especially around this time of year. Buying Christmas presents for Dom isn’t easy. It involves a lot of thought about what he likes doing, and how we can get him things that will engage him both cognitively and in a sensory capacity. We look around at therapy equipment, we look at his functional capabilities…we do our best and all of it is done with that same sense of hopeful “I don’t know whether he’s going to enjoy this” mentality.

Sometimes we miss. But sometimes we nail it. We had a rubber inflatable donkey we bought when he was a baby….we figured it would be something he could rest against and climb on as he tried to figure out the whole gross motor skill thing. And he absolutely adored the donkey (lovingly named “ponkey donkey” by his nonnie). We nailed that one. And nothing feels better than to get him something he loves.

Christmas and birthdays are hard. Heck they’re hard for any parent of any kid. But implied within that continuous “I don’t know if they’ll enjoy this” part of buying presents is a deep sense of resilient hope…that even if they don’t enjoy this, we’ll work tirelessly until we find that thing that they enjoy. And then we’ll sit back and revel in their enjoyment.

“I don’t know if she’s enjoying this” is a statement that will be in my mind for a long long time.

a rose by any other name...

a couple of days ago we went to a new doctor...we've had a pleasant break where we havent had to see too many doctors, but we've decided to tackle dom's spasticity in his upper extremities since his legs seem to be relatively good to go after surgery last year.

so we went to a new doctor and started talking to them about dom's diagnosis, his personality and so on.

one of our great mysteries with dominic is his speech regression. when he was about 18 months old he had a decent number of words. he could sing along to songs...and his therapists even wanted us to start working on multiple word sentences with him. then somehow within 6-8 months those words just disappeared. we have no idea what happened.

we've explored every possibility including apraxia of speech, side affects from medication and so on. one thing we did talk to our doctors about was the possibility of dom being on the autism spectrum given some of his other symptoms, but at the time our doctor said that he didnt think that was an issue for us, so we kind of forgot about it.

but in talking to this new doctor the topic of autism came up. and here's the kicker...we never really know what is and what isnt related to dom's CP. it might not be autism...it could be pervasive development disorder. buuuuut, when you add up all of the symptoms: lack of eye contact, on and off again social issues, the occasional inconsolable meltdown, the incidents of self injury when he gets frustrated....all of that kind of paints a picture that looks like autism.

so this is a good news bad news situation. the bad news is that we have to recalibrate our expectations. we thought he'd grow out of some of these behaviors, and that might not be the truth. the good news here is that we've got another label by which to describe him to people that dont know him. in the grand scheme of things isnt that what a diagnosis is? a descriptor/common language so that everyone can get on the same page about stuff?

so it sounds strange, but im oddly grateful to attach a name and a diagnosis to some of the things that have perplexed us about dom. being dom's dad has been a constant process of getting to know him. there's still so much in that head of his that i dont know, and in some sense it feels like we took a step forward with this. he's on the autism spectrum. good deal. what layer of the onion are we going to pull back next gommy goo?

and like the title said...a rose by any other name is still a rose. doesnt matter what a prescription pad or a doctors report says, he's still my dommy...and now we've got language to describe him and his need a little better than we did before...in ways that he cant do so for himself.

im grateful for that.

New Beginnings

The Singhs are officially moving.

Well some of us already have moved.

How about I start from the beginning.

D and I have long talked about moving to be closer to her family. We've always wanted our kids to grow up with their cousins and to be around for regular family events instead of having to drive into Austin on a weekly basis.

This past summer we also realized that we needed help. Between traveling for surgeries and managing therapies, new schools, doctors appointments etc...we came to the conclusion that being here in College Station wasn't sustainable long term, and we decided that over the next year or so we'd start making steps to move to the Austin area.

Well shortly after making that decision, a fantastic opportunity presented itself for Danielle...she applied to be the City Engineer of Hutto (a great promotion for her) and within the course of three weeks she had applied, interviewed, and been selected for the position. She started the position last week.

So that kind of accelerated my job search process...but fortunately enough I came upon a wonderful opportunity at A&M-Central Texas as the Director of Access and Inclusion. And within that same kind of three week phase I interviewed and was offered the position.

So shortly thereafter we started the process of packing up. We wanted to get the kids in school ASAP so that they could adjust to their new routine, so as I type this D and the kids are already in Jarrell (D's parents have been super gracious to let us live with them until our house sells) in school and everything. Vincent is in a great private school (same private school that D, her sisters, her mom, and grandfather went to), Gommy is in an all day (!!!! no more child care worries!!!!) PPCD classroom and diya is in a great little daycare close to her mom's work.

I start my position on November 2 and my last day at Texas A&M College Station will be October 28.

D and I have spent the majority of our adult lives in College Station. We met in this town (at La Bodega which sadly no longer exists) Our three children were born in this town. I came to A&M as a 24 year old kid with a full head of hair...and 12 years later here we are.

By no means is this easy. We're not even 100% in Austin and we are already missing College Station...the people, our jobs...everything. We know that this move is the right one....and one that is the best for our family, but that doesn't mean that it's at all easy. But over the course of the month I keep thinking about something that I've heard attributed to Winnie the Pooh (and then later found out that Pooh didn't actually say it but just go with me here)...

That's the lens that we choose to use to look at this. D and I have been so blessed to have spent the past 10+ years in this town working with and being friends with some of the most caring and loving people that we will ever meet. For me personally, I may have been raised in Houston, but I grew up in College Station.

This town has been really good to us. And we're sad to leave. But we are leaving with confidence knowing that we are doing the right thing by our family. And that, to us, is the single most important factor in any decision that we will ever make.

So Gig'Em and God Bless, Aggieland. The Singhs will forever be grateful to you.

the glue

when gommy and vincent were little, they were best friends. they'd wrestle, cuddle...all sorts of stuff. vincent never had any issue making gommy laugh.

over time that relationship changed a bit. gommy became a little more serious and a little less enchanted by brothers jokes. and vincent got more interested in big boy toys, etc. if you ask vincent who his best friend is, he'll still say gommy...but things changed.

but what we've realized lately is that didi pants is the glue of our family and the glue of those brothers. somehow, now more than ever, i find all three in the same place...whether that's in the living room or randomly hanging out together on the treadmill. in a strange and beautiful way this little girl has brought balance to the force of her brothers

and what's great about it is that she's got the most beautiful relationship with the both of them. vincent adores her. would do anything to make her laugh. wants to cuddle and wrestle and throw pillows on her and she just laughs and goes a long with whatever he does. if he's running around the house she's on all fours with a smile on her face trying to keep up. he can do no wrong in her eyes.

and for gommy...she's the only person in our house that knows gommy just as he is. vincent has seen gommy as a baby with limitless potential...then as a toddler who didnt quite toddle and doesnt talk (at least not in the traditional sense). d and i see gommy not only for who he is, but for who he tries to be...we see present and future, ability and dreams. but diya couldnt care less about any of that. she knows gommy as gommy. she doesnt care about what he could be or what he will be. she knows him only as he is. it's the purest thing i've ever seen. 

we often treat gommy with kid gloves. if he's fussy we try and console him, if he's getting frustrated we go through a complex thought process of trying to balance out enabling vs helping. not didi though. if gommy has something she wants, she'll pull his hair to get it. if gommy is fussy, she doesnt care...she'll still climb all over him and bother him and then cuddle up to him. why? because no matter what he's her brother and he is who he is. this is her beautiful normal and there's no other expectations. 

i dont know if i'm explaining this well because it's even hard for me to understand. i guess the best way to phrase it is that the love diya has for her brothers is unconditional and pure. she's 8 months old and has already taught us so much about what true love means. 

who would have thought that the newest member of the singh crew would turn out to be the glue. 

milestones

we have an odd relationship with milestones.

right now didi pants (the littlest one) is all over the place. not quite crawling on all fours, but army crawling to get where ever she wants to go. but the big thing the is that she can push herself up to sit. like all by herself. we didnt need to teach her that or anything. she just kind of picked it up on her own.

and i mean that's a typical milestone for a kid of her age, but i cant help but think back on how hard we worked on that with dominic. for darn near a year we worked with him on where to put his hands, how to move his legs, and how to coordinate everything to sit up....until one day he just did it and we celebrated big time.

these moments are fantastic for both didi and dommy because 1) didi doing that and learning that on her own is just mind boggling. you never realize how complex movements are and how much coordination goes into them until you struggle with them...and it's super exciting to see didi just fly through them with no issues. but then, in a sense, dommy's brain is speaking french and his body only understands japanese yet somehow he was able to coordinate those and make things happen. i'm so proud of both of them.

d and i dont really spend much time thinking of what dom isnt doing as compared to his peers. we know things are delayed, and we're fine with it. when dom is in our house he's not disabled or developmentally delayed...he's just dom.

but occasionally we are forced into those comparisons. yesterday we got reports back from OT and speech evaluations...which kind of knocked us on our ass. seeing words like "cognitively delayed" and "non ambulatory" and "other reduction/deformities of brain"...those are hard. really hard. we're not in denial. we look at the rate at which diya is developing and can see a stark difference in how gommy's developing. we know. but it's just hard to see it in writing.

best comparison: i can look in the mirror and think "hey i'm looking kind of fat" and just sigh and move on. but if someone else says "dude you're looking kind of fat" that's devastating. not information i dont know or havent thought about but come on man, dont just say it.

it's these quiet moments that bring the tears on. it's these quiet moments that we sit and talk about whether the future we want for dommy is possible. it's these quiet moments that we just wonder what's next.

and then we kind of move on because we have to. because dwelling in the future (or the past) requires more emotional energy than we're able to muster up.

yesterday reminded me of how hard all of this is. we're on an uncertain journey guided only by the strength of our family and the tenacity of our son.

there are so many good days. but then there are bad days. and sometimes it's ok to admit that.

6 weeks post-op!

the 6 week mark is kind of a big milestone for SDR patients. it's basically when we can officially get back to "normal" as far as every day operations go. prior to this point we werent supposed to be lifting him under the arms, no using an e-stim unit, no hippotherapy...basically still handling him with kid gloves. but now that 6 weeks have passed we can officially say that dom has healed from his surgery. so here are a few quick updates:

taking good steps!

we're making really good progress. therapy nowadays consists of about half an hour of work getting from his knees to a standing position, or maybe stretching or sitting...and a half an hour of walking down the hallways at st. joe's. he's taking some really really pretty steps--things that he wasnt doing prior to the surgery. now that the spasticity is almost completely gone we're realizing a couple of things 1) his right leg is a more affected than his left (which is weird because his left arm is more affected than his right) and 2) his quads are still trying to get strong enough to walk consistently. our PT said the other day that she could feel his muscles trying to get moving and trying to figure out how to fire to make the leg move--it's a somewhat new sensation for him. lefty is doing really well...with almost flawless heel toe steps. righty lags a little bit, but we're slowly but surely getting there. 

sleeping!

oddly enough the surgery has resulted in him sleeping a little better. prior to SDR we maybe got 1 full night of sleep a week. normally he'd wake up 1-2 times a night. but lately we're getting at least 2-3 nights where he sleeps fully through which is great for us. we're realizing that his spasticity might have come with some pain...i mean his muscles/hamstrings everything were so tight...it had to be uncomfortable. seems like getting rid of that has put him in a more comfortable space. 

funny story: so last week was a particularly bad week sleeping wise. no idea why...we were just up at 12:15 every night for about an hour and a half. d and i were zombies by the end of the week. finally on thursday he actually slept through.....................which would have been great except the older one woke up at like 1 and asked if he could climb into bed, and then at 3 the youngest (who sleeps like a damn champ) decided that she was feeling snacky and wanted a bottle. so yeah. dommy slept well but the other two raised his flag in his absence to make sure that mom and dad got no sleep. starting to think it's a criminal conspiracy. 

what's next!

well now that we've conquered SDR D and i have made another realization. speech has been really frustrating for us...dommy had words at 18 months and then just lost them. speech therapy is really frustrating for everyone. we made great gains doing feeding therapy but we feel like we're not getting anywhere with speech right now. 

so we decided to do some digging and we feel pretty confident that dom has apraxia of speech. my understanding of that is that he's smart enough to know the value of words and what words are, but just cant quite figure out how to make his mouth make the words. like we just cant quite get the muscle movement down.

all of this was a total lightbulb aha moment for us...i mean we had to teach him how to eat solids from the ground up...tongue movement, chewing, etc. we had to teach him how to move his mouth. makes sense that we'd have to do the same for speech. 

so on one hand it's a bit overwhelming to have another diagnosis on our hands, on the other we FINALLY have a name for what's been frustrating us. apraxia comes with its own set of therapy techniques and things to try...which is really really good news. we're ready to attack this one to get it figured out. 

feelings! 

there's a weird dichotomy for us...the more dom does the more impatient we get for him to do more. if for some reason we knew he wouldnt or couldnt walk, then we would be perfectly content...but now that he's walking well in his gait trainer and showing that he has much less spasticity in his lower extremeties...we just kind of want him to be doing more. we're so ready for him to walk because we know he's capable of it. we've got one more procedure in st. louis coming up in july to lengthen his heel cord and his hamstrings...and we're ready for that to happen ASAP. hard to be patient when you know exactly what you want. maybe that's a good thing. maybe being too patient would result in complacency. either way it's something that we kind of struggle with....knowing that we're making good progress, seeing that we have a decent ways to go, and just wanting to work as hard as we can to get there. 

we've settled in pretty well to the 5 therapies a week schedule...and i think Dom has found his groove too in what to expect as far as his daily routine goes. 

so far so good friends. we're trending in the right direction. 

SDR Day

it's 9 oclock and i've been up since 3 am, so you'll have to excuse me if this gets rambly and overly emotional.

a two year long dream was actualized today. the first time we heard about SDR was when dommy was about a year old knowing that we couldnt apply until he was 2. at 2 we got turned down and told to reapply when he was 3. at 3 we reapplied and got accepted...and here we are at 3.5 years old.

not to mention the anticipation of getting here for the past two months. everyday has felt like two days...one day full of the normal routine, but also filled with 24 hours of fretting about logistics, leaving our eldest with his grandparents for two weeks....not to mention our sweet gommy having his vertebrae cracked open, spinal nerves untangled and then cut. it's been draining.

but here we are.

about a week and a half ago we were at home and gommy bunny hopped (as he's known to do) over to our staircase and tried to get up the first step. he knows the motions well...lift one leg up, push with the other all with your hands on the second step, but his tightness wouldnt let him get up that first step. he wanted it so damn bad. he tried and and tried and after a while started crying out of frustration.

i picked him up and told him that as God was my witness, i was going to get him up those steps. we were going to get to the top of our staircase.

coincidentally enough yesterday at our pre-op PT evaluation he saw a set of stairs and managed to get up the first step by himself. i feel like that was his way of saying "you do your part dad, God will do his part, and I'm damn sure going to do my part"

so now one big step is done. it's time for recovery. the it's time to do 5 PT sessions a week for the next 6 months.

none of this has been easy. it wont be easy moving forward.

but it's so worth it. so very worth it.

today was a good day. today was the first day of what's going to be a series of good days.

an update on SDR--st. louis here we come

a little over a year ago we applied for gommy to be a candidate for selective dorsal rhizotomy surgery in st. louis. we were pretty devastated when we were rejected. at the time we had put a ton of hope into the possibilities that that surgery could provide--a life with lessened spasticity and increased mobility...and to get turned down was as if someone was saying that we werent allowed to ever have those things.

well a year later we put together a new application...complete with new videos and paperwork...and lo and behold we were accepted. not only were we accepted but the doctor told us how pleased he was with dominic's progress and indicated that he could see no reason at all that dominic wouldnt walk independently at some point.

read that again. the doctor thinks dominic will walk independently. HE THINKS DOMINIC WILL WALK INDEPENDENTLY AS A RESULT OF THIS SURGERY. i want to cry just thinking about it.

D and i are yin and yang. what she stresses out about i'm typically perfectly ok with and whatever i stress out she's perfectly ok with. D has no fear as it relates to this surgery...and me...well i'm not quite there. we know that this is what needs to happen and a few hours of surgery combined with a few months of intense physical therapy is a small price to pay for a lifetime of freedom.

however i'm trying to channel my inner kevin mccalister by saying "this is it...dont get scared now". i am terrified  to send my sweet gommy going into a spinal surgery. he's been sedated before....but it's that lack of control that lack of ability to be with him every step of the way. it's so cliche to say but i wish they would just say "hey we can do the surgery on you and he'll reap the benefits". man i'd sign up for that 10 times over. or perhaps if they said "well research shows us that if we cut off the dad's right hand it's basically the same as SDR" i'd respond with "great, at least now i'll spend less time on twitter"

but alas none of that is the way that things work. so right now i'm drawing from the strength of d and gommy. they are way stronger and way tougher than i am. i'll get there. but i might just have to fake it for a while.

the journey starts on March 11th with a drive to St. Louis and the surgery itself is scheduled for march 15. a day where d and i are able to put wheels into motion to hopefully give gommy a bit more freedom and maybe few more possibilities than he would have had otherwise.

time to get my mind right. we'll be ready.

little baby girl

so apparently a random day last week was national daughter's day. i kind of feel like a jerk because i'm pretty sure we missed national sons day. but then again our boys are pretty darn spoiled so every day is really national sons day.

d is 36 weeks pregnant. a little baby girl is about to enter our lives and throw everything gloriously up in the air. cant really put into words how excited i am. i think part of it stems from the fact that i know this is the last one...that makes me want to enjoy every single second of it. i think the second thing that makes me excited is the fact that d and i are blessed that we get to have three completely different and unique parenting experience. vincent was our first, which was crazy in and of itself. dommy reshifted every single paradigm we had about parenting and made us better stronger and more loving people. and now a little girl? man. we are lucky lucky people.

baby 3 was close to not happening. with everything that's happened over the past few years d and i wondered whether we'd have the time and energy to have/raise another child. both of us really really wanted a third, but just didnt know if that would be a good idea. all of that flipped on a dime one day. we went to get a second opinion from a physiatrist in houston...and the guy basically told us that the pathway we were on was correct and that while surgery might be a good option down the road, right now it wasnt the right thing. that was hard to hear. it was like being rejected for the second time in a row.

we went to grab some lunch from smashburger (random that i remember that), and when i got back in the car d looked at me and said "i've made a decision"...i thought it was going to be something having to do with surgery/medication etc. but she looked at me and told me that she'd decided that we were going to have a third. she said that we thought we'd wait to make a decision on a third when life got a little easier...but the reality was that life wasnt going to get any easier--we just needed to get tougher. and if life wasnt going to get easier, why not throw a baby in the mix? why not give our two sons a little sibling? we've always made it a point to not let dommy's CP define who he is or who we are as a family. and with the decision to have a third we were committing to that point. and it was the absolute right thing for us and our boys.

flashforward 30 some odd weeks and here we are. hospital bag packed. crib all ready to go, and shelve in our room full of random baby stuff. completely impractical pink frilly outfits purchased. amazon prime subscribe and save updated to include newborn diapers.

mannnn i cant even tell you. my heart grows by a million sizes when i think of our daughter hanging out with her brothers. my heart grows when i think of my wife nursing a newborn. my heart grows when i think about dommy and vincent BOTH being big brothers.

giddy up. we've got a fun season coming up.

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.

 

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