2014

Poppa here.

It's been my goal for quite some time to write a reflective post on 2013...but I couldnt really get it out. Recently I realized that the reason I didnt really want to write it is because I didnt want to complain and be negative. So instead of reflecting too much on 2013, I'm going to talk about the year and share how it made me better.

2013 was easily the most difficult year of my life. Easily. So many things that I took for granted got thrown up in the air...big things like Gommy's health, and even little things like Tootie's daycare situation...employment stuff too. It was challenging. It was rough. It was stressful. I'm glad it's over.

But to briefly focus on the most difficult part of it all...a year ago at this time we had no clue about Dom's condition. All we knew was that his dome was a bit misshapen and he had a bit of tightness in his neck. Isnt that strange? He was who he was, but we just didnt know it. Seems odd...you'd think that you know your kids through and through, but we knew so little about Dom, and spent the year finding out more about him. January 3 was our appointment with our pediatrician about his head/neck, January 11 was our first appointment at cranial technologies in Austin for his helmet. He got fitted with his helmet on the 18th...and they were the ones who really pushed us to get therapy. His first PT appointment was on February 6. The therapists noticed that Dom's tightness might not just be muscular and that we might need to get an MRI. We met with our pediatrician on March 1st and he recommended seeing a neurologist...who we saw on March 4. The neuro said that we needed to get an MRI, so we did on March 26. And March 26 is when we finally found out about Dom's PMG. The rest I suppose is history.

Insane. What a ride. What a terrible...but rewarding ride.

Why rewarding? Through struggle comes growth. Through struggle comes clarity. I have learned so much about myself, my wife and my kids through this process that perhaps I wouldnt have known other wise...

• I learned that a mother's love manifests itself into an unmatched level of dedication
• I learned that my family is the most important thing in the world and nothing else really matters
• I've learned that my younger son is my hero
• I've learned that my older son is the big brother I always wanted...someone that I look up to and the perfect big brother to Dominic. 
• I've learned that God will always take care of us. Even at our lonliest and saddest moments, God's been right there with us encouraging us and pushing us down the path He laid out. Unconditional release and trust. 

None of that does any justice to what this year has been like for the fam, but then again I'll spend the rest of my life learning from this past year. This is just the tip of the iceberg. So in some sense maybe I'm thankful for 2013.......

but I'm damn sure glad it's over.

2014 is our year. 2014 is the year we kick ass. 2014 is the year we stop treating Dom's condition and start opening up his world to a whole new level of possibility. 2014 is the year our family loves each other deeper and with more joy than we've ever done in the past. 2014 is where we remind ourselves daily how blessed we are to have each other.

Happy New Years friends. It's going to be a fantastic year.

Today Was A Good Day

Today was a good day.  The best day.  A day where our appointments started to change.  A day where doctors talked to me about my son's potential and not his prognosis. Today was a good day.

This good day hasn't come out of nowhere.  This day came from work and planning, an online degree in neurology and Gominic's bad-ass little attitude where he refused to let others define him or what he would do in life.

This day came after lots of questioning and soul-searching, and sleepless nights and wondering if we were doing everything in our power to help our son.  Today a neurologist told me that he wanted me to adopt him.  My supermom status has now been made official.  It's cool if you want me to adopt you too, I've pretty much nailed this mom thing.  Also, I think I just realized where Gommy got his larger than life-I've got more intelligence in my half-brain-than you have in your full brain-attitude.  But today was a good day, and I can't help but feeling on top of the world.

Today came after we were knocked on our asses from a dream of all things.  Big Poppa had a dream where he saw Dominic standing in diaper on chubby little baby legs just bouncing and smiling like babies do.  This may not sound like much, but it made us realize THAT WE HAD NEVER PICTURED OUR KID STANDING!  Isn't that odd?  But this is our reality, and it made us a little sad for once.  We love our world and wouldn't change it, but for a second we felt robbed.  We don't remember what it feels like to take these things for granted.

But of course, Gominic never leaves us wanting for long, so this weekend he drank his bottle from a straw(this takes a lot of muscle coordination that doesn't come easy for him) and said his first repeat word "Push".  Oddest first word ever, but that's Gominic's style.  He's a non-conformer.

And today, we went to a spasticity clinic where we were evaluated by 5 doctors and therapists for hours.  It was exhausting for all us, but it was also wonderful.  They were extremely pleased with his cognitive abilities and said that his physical abilities did not measure up, even though they were really impressed with how mobile he had become with all his limitations.  Because of all of this, they said that by treating his spasticity, we could hope for a lot of progress.  We landed on a neuro-stimulator that relaxes the muscles.  We will also evaluate him after a month to see if we want to focus on certain areas with Botox.  I'm totally J.

They had a lot of hopes for his future, it won't be easy but they think we will get there.  My son may walk and talk!  Wow.  Just wow.  It won't be without effort though, if these treatments don't work, we will start looking at surgical options.  These could involve removing some of the nerves from his spine or inserting a pump that will deliver muscle relaxers directly to his spine.  These may sound extreme, but with a kid as motivated as him, I am going to do everything I can.  That kid is awesome.  I love him beyond words.

We then had a wonderful appointment with his optometrist.  His lazy eye has completely corrected itself through patching!  At one point we were discussing surgery for this, but Gominic doesn't always need our help.  He has also lost his tunnel vision and had no more neurological vision impairments!  He of course will still need glasses soon because he inherited our terrible vision, but that has nothing to do with his diagnosis.  His optometrist couldn't believe the difference in Dominic and said that in just 3 months he was a different baby.  He predicted that someday, we would be walking through the mall and no one would be able to tell what we had gone through.  Today I believed him.

Today was a good day.

You Ruined It

Like so many others, I enjoyed watching the story about the friendship between A.J. McCarron and A.J. Starr this week. But then you ruined it for me.  Ruined it with your posts on facebook and your comments that A.J. McCarron was selfless and such a good human being and a hero.  Ruined it how you ruin it when I talk about my son and you give me sad eyes or a sympathetic head tilt.  Ruined it how when I tell you about my son you apologize.  For what? My son is a badass.  You ruined it how you make me feel like I am lying when you ask about my kids and I haven't clarified that one of my kids has Cerebral Palsy, because to you that matters.  You ruined it.

Then I realized we watched two different stories, and I wanted to let you in on mine.  I watched a story of hope about a kid (when did I start to refer to college aged as kids?! #30problems) who found his place.  I could relate, I remember when I was struggling to find my place in college and it took me years to feel like I fit in.  It made me feel hope for Gominic, that there were people out there that would value him for him and he could find his group where he was just one of the guys.

I was happy, but then you ruined it.  You reminded me that from the outside looking in, you viewed this relationship as a sacrifice and charity and not that these two could be equals.  Because of course if you have a disability, you can never be equals.

This is not ok.  Why do we continually try to exclude groups of people?  Have we not moved past the racism of the 60's?  Haven't we just replaced those with infringements on gay rights? Do you really think using the word Retarded is any different than using the N-word?  If that word is still in your vocabulary for any other reason than "flame-retardant", then we simply cannot be friends.  If you don't think that in 40+ years our generation will be the old people in nursing homes whose grandchildren are making excuses for our homophobic and bigoted comments, "they grew up in a different time", then you better check yourself.  We are all equals, and it is time we started treating each other as such.

Put yourself in my shoes.  What do you want for your kid?  I am guessing not charity friendships.  You all are raising Gominic's peers.  I need you to help me create the world I want for my son.  Please don't teach your kids that they should be nice to kids like Gominic.  Teach them that my son has value.  Teach them that he is equal and worthy of friendship.  He is not to be pitied.  He has a wonderful life and more love and privilege than most.

After Shailen's awareness post, a friend commented about a story from her childhood when she saw a differently abled girl using crutches at church.  Her mother noticed her looking at the girl sadly and asked why, "Because I feel sorry for her". The mom replied, "There is no need to feel sorry for her. She is walking just like you.  She has friends just like you.  She is loved by Jesus, just like you.  Should we feel sorry for you?"  That mom gets it.

Don't let your kids become another obstacle my son has to overcome.  He has enough to conquer on his own.  Let's just all be people together.  And for goodness sake, stop with all the sympathetic head-tilting.

awareness

I wear this bracelet everyday...as does my wife and many of our family members. I suppose the intent of the bracelet is to increase awareness about PMG, but really I kind of look at it just as a physical reminder on my wrist of my gommy...which in turn makes me think of tooters, which in turn makes me think of the wife. So all in all, I wear it more for selfish reasons than anything related to "awareness".

And really, I struggle with the concept of "awareness". What am I trying to make people aware of? PMG? Cerebral Palsy? While both of those are worthwhile causes, I just don't know if that's what I want to bring "awareness" to.

But it kind of struck me today as I dropped tooters off at daycare. One of his fantastic providers noticed my bracelet, and asked about it, so I told her about Gommy, his background our year, etc. Another one of his providers (and he loves them both) asked the same thing and I shared our story.

Both had kind of the same reaction...a mix of sadness and empathy for our "plight". And this isn't the first time that out story has gotten such a reaction. I cant blame folks for their reactions, and their empathy is very much valued--we've got a fantastic support network of folks who care about us.

But every time I get that reaction, it creates a sense of dissonance in me because I'm not sad about who gommy is. I've gotten past those shocked/surprised/sad emotions, and I'm pretty damn happy about our life. I'm pretty damn happy with who Gommy is, and I'm pretty damn  happy about everything going on in my life.

So I've decided that my "cause" that I'm looking to bring "awareness" to is that disabilities aren't a sad thing. Gommy's CP is not something we are burdened by. It's not something that we are depressed about or something we need sympathy over. In fact it's the direct opposite. CP is part of who Gommy is, and we celebrate everything...and i mean EVERYTHING about him. Case in point, as the kids grow up the smell of spit up makes me nostalgic. I'll sit there and sniff a bib that smells of spitup because it reminds me of my kids. I HAVE NO IDEA WHATS WRONG WITH ME EITHER.

Disabilities aren't sad, and folks who have disabilities and their family members arent to be sympathized with or pitied or anything like that, because hey, our kids are our kids and we don't love them despite what they're going through. We love them with it. It's part of them. And that's ok. No it's more than ok, it's fantastic. My son is who he is and he's a badass who pushes me to grow dailiy as a parent and a person. He's taught me so much about who I am and who I want to be. Everyone deserves someone in their life like that, and I'm just blessed that I have three people who do that for me.

So my "cause" is simply this. When you encounter someone with a disability, or someone who has a child with a disability, fight your inner instinct to go with the sympathetic head tilt when they tell you about it. Because they don't want that, need it, and quite frankly it makes no sense to them (at least it doesnt to us--and I dont mean to speak on behalf of all parents of kids with disabilities). Ask them about it because maybe they want to talk about it (and hey my kids are awesome and I will talk to you about it every day until you are tired of me). But don't ever be afraid of asking the "wrong" question because there is no wrong question. If you're asking about my kids, that means you care about them and that makes us friends.

Sure life might be a tad bit busier with therapy everyday. Sure spending 10k on medical expenses this year (yeah. seriously, holy hell) is a bit much. But at the end of the day I get to go home to a gommy and a tooties. I get to watch them wrestle eachother. I get to throw gommy up in the air, and wrestle him on the bed and make him laugh until he farts. Then I get to throw him around and have him spit up on my shirt because he just ate.









but then I get to sniff my shirt because the smell makes me smile. And that's pretty f'ing cool in my book.

a few quick updates

Seizure Free! Swallowing Well!

A few weeks ago we spent the night over at Dell Children's in Austin for a 24 hour EEG to check if some of Dommy's sleep irregularities were actually seizure activity. On one hand this could be considered kind of a pain in the butt because we had one of those terrible fold out hospital beds to sleep on and we had people checking on us every few hours (dommy had a lovely crib).

On the other hand: HOSPITAL FOOD! I mean that in a good way. We love hospital food, in fact when D was pregnant with both gommy and tooters we used to schedule our OB appointments for first thing in the morning so we could get them done and go get hospital breakfast. I mean we're talking bacon, eggs, and fruit for like 4 bucks. Helluva deal.

Anyhoo, the fantastic news about all of this is Gommy is 100% seizure free! His EEG showed some slowing (which is not surprising) but no seizures, which is just about the best news ever because they scare the absolute crap out of me. But for now we are free and clear!

The second part of that appointment was a swallow study. A lot of kids with PMG have feeding issues, in that they aspirate their food (take it into their lungs). So a swallow study for Gommy was in order. We mixed up some barium with his food and watched him take it in through an x-ray--absolutely fascinating. Long story short, Gommy has slight issues swallowing but nothing therapy cant help. I've long thought through this process that I dont care how much therapy we have to do...we'll do it. We're blessed that there are no physiological issues.

Personality

Gommy is a little over a year old now, and man his personality quirks are starting to show through. He is the sweetest, most loving baby that you'll ever see...

But dont make him angry. You wont like him when he's angry.

Surefire ways to make him angry? Dont include him in roughhousing with his older brother. He lets out a bloodcurdling shriek that is in no ways said...rather it is an immediate command to cease what you are doing and focus your attention on including him. And truthfully I dont think it has anything to do with attention from Dad. I think it's all about attention from big brother.

Another way to make him mad is by making him wait. If he wants his food he wants it right then.  If he wants a toy, he wants it right then. And it's not sad yelling (except if a toy he was playing with fell on the floor). No, Gommy commands. Gommy demands.

(and I'm ok with it all)

Wrestling

Last thing is wrestling. And I'm talking full on wrestling between our boys. Everyday, Tooters will ask us to put Gommy on the floor and an all out brawl breaks out (well not really). Tooters will roll on top of him, and Gommy will roll back, Tooters will put his foot in Gommy's face, Gommy will do his best to eat his brother's face. It's all in very slow motion, and occasionally Gommy gets the best of Tooters and we'll hear "GOMMY KICKED ME" which again I'm ok with. These boys love to wrestle each other...and for being as tight as he can be sometimes Gommy certainly holds his own.

The Blog I Shouldn't Write

This isn't the blog I should be writing today.  I have been absent from the blog because life has been crazy (and we have a ton going on for Gominic), and I have intended to update those of you who are still standing by me patiently.  But I don't feel like writing that blog today.  Today I want to brag.  So if we are frien-emies, you may want to quit reading right here.  This blog is going to be all about how I have won.

I don't write about Vincent much.  In life he gets every bit as much attention as Dominic does, but in the virtual world, he is very little known.  I am just going to put this out there. Vincent is a genius.  Not in a way that all parents think their kids are geniuses; I truly expect for him to cure cancer. Or find a way to use his looks to get him everything he wants and not work a day in his life.  The kid has it all.  I used to be vain about my looks, but since having that kid I am reminded on a daily basis that a boy can actually be prettier than me.  It's a tough pill to swallow, but I've adjusted.  I digress.  Vincent is trilingual.  He is of course fluent in English, can count to ten in Spanish and sing Move It Move It in a language I cannot recognize.  I'm just going to assume its Mandarin.  From the best I can tell, he is functioning at a four year old level at least.  I don't want to bog you down with the stats of all that he can do, but each day I find out more and more of what he knows.  His Montessori teachers have confirmed that he is frighteningly intelligent.  So I know what you are all thinking, supermom, right?  I must be working with him constantly to teach him everything.

That's the thing.  I am a surprisingly a care-free mom when it comes to Vincent.  Sure we read, but I didn't ever show him how to count.  I had to remind myself how to count in Spanish.  I can't alphabetize without repeating all the letters from the start in my head.  Also, this is embarrassing to admit as an engineer, but I still count on my fingers.  I have done nothing to teach him these things.  I do have a secret weapon with Carolyn who until recently had kept him every day since he was 4 months old; I know she taught him an incredible amount of things.  For all I know, she probably spent hours teaching him Move It Move It in Mandarin.  With Vincent I have been more like the fun Aunt; we trash the house with our art projects and pretty much just have a good time.  He potty trained himself for goodness sakes.  All I did was buy him a potty.  No I take that back, Nonnie bought him the potty.  I did nothing.  It never occurred to me that I should teach him things.  Maybe because I never needed to.

I can't say that I have been all that surprised with Vincent's level of intelligence.  I'm pretty smart and so is his father, but even more so he is part of legacy.  His great-grandfather is P.C. Vaidya.  Now unless you are a super nerd, you won't recognize that name, but he was a great man who did incredible things.  He did many great things for the academic and physics community, but his greatest accomplishment was writing the solution for Einstein's Theory of Relativity.  Yeah, I just said that.  I'm not sure what that actually means, but I said it.  He had arguably one of the most incredible brains of all times.  I think of him often when I think of my boys.

Dominic was not the first son I was told had brain damage.  You see, Vincent for unknown reasons also has some brain damage, although slight.  When I first heard that about Vincent I thought a lot about his great-grandfather, and I prayed that my son had gotten just a portion of those brain genes.  When we first found out about Vincent's brain damage, he was 9 months.  He was a little behind with his talking and not very interested in toys.  At the time, it was devastating and I didn't know what I could expect.

Now with Dominic's diagnosis I pray for the same thing.  When neurologists tell me he won't do much, I think to myself, that they have no clue what kind of brain my son started with.  I don't think Gommy needs the other half of his brain.  I think he started out with a brain more amazing than any of us could ever fathom.  I think had we never gotten CMV, he probably could have cured cancer or at least confirmed that Pluto is indeed a planet.  I think now, he can use that incredible brain to learn to walk and learn to talk and learn to eat.

I still hold out hope for Dominic to live a normal life despite every expert telling me different.  Maybe I am naive and have no clue.  Or maybe I am just following Dominic's cues.  We recently got an IPad for him (I am not above spoiling children).  On his favorite game, they tell you which animal to find and you chose from 3.  We soon realized that HE GETS EVERY ONE RIGHT.  His speech and occupational therapists confirmed it.  He knows his animals.  Again, I didn't teach him this, and he is only 1.  I can only assume he learned from Vincent.  So I can't just listen to what experts say, I have to listen to what Dominic says.  Either way, I know he has an incredible brain.  I expect incredible things from that kid.    

Life Affirming Decisions

Over the past year or so the wife and I have had a goal of moving out of our current location to Austin for a number of reasons...we have loving, and supportive family members there (all of whom would would love nothing more than to have us move back) and for the most part all of Gommy's doctors are in Austin as well. Those are the concrete reasons. The vague, emotional reasons are that...well...to an extent Twisty and I need a bit of a fresh start with everything going, and we thought Austin would provide that.

Recently we closed that door for a variety of reasons. Circumstances came up that forced us to take a look at our current situation, and we realized that hey, we have it pretty good here, and there's no guarantee that our life in Austin would be better than what it is now...and Austin actually might end up being not quite as good as our current location. So we made the decision to stay.

This decision was one of the hardest that we've ever had to make.It was incredibly incredibly stressful. On the day we made it for certain, both of us couldn't help but wonder whether we'd made the right one.

The title of this post is life affirming decisions...meaning on one hand decisions that affirm the life you want. But also that sometimes, life has a tricky way of affirming your decisions too.

The day we decided to stay put, Twisty got a phone call from a number she didnt recognize. She clicked ignore. Then I got a phone call from the same number. I picked it up. It was our pediatrician's nurse (who we adore). Our pediatrician is moving to a new facility, and they are looking to decorate the new office with pictures of families that mean a lot to them. She told us that we were the first ones that they thought of--that Gommy (and tooties) are near and dear to their hearts. She got choked up as she shared this with us, and naturally we did too.

Life affirming decisions.

Yesterday we were in Austin for a variety of appointments...basically going from about 9:30 until 3. As we drove around Dell Children's between gas stations and lunch spots we kind of realized that we are not really cut out to live in Austin...that we'd romanticized the idea, but we didn't really like it in practice. All the regret and doubt went away in that moment.

I grew up as an only child, and I've struggled with the concept of setting roots down somewhere because of the lack of a real extended family. I'm lucky that I marred into the family that I did because not only do I have another set of parents, and siblings, I also have new best friends. Moving to Austin would have reconnected us with our roots, but the process of making that decision made us realize that we have a different set of roots here in this town. We have nurses, day care providers, trainers, doctors, therapists all of whom care about us in their own way...and all of whom we care about deeply. Maybe roots are defined simply as folks who you have deep connections with. Maybe we have set roots here without even knowing it.

At any rate, with that decision behind us, it's now part of our job to cultivate these roots and make this a permanent home for us. And quite frankly, I'm kind of excited about that.