A two parter

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

Movement I: Interpreting the Messages

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

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

Movement II: The message

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

Below are the lyrics:

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

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

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

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

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

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

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

Paralysis

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

synonyms:

disable, cripple, immobilize, incapacitate, debilitate; More

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

synonyms:

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

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

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

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

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

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

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

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

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

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

All The Tears

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

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

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

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

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

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

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

  

Monsters

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

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

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

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

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

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

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

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

At least I think I know that.

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

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

Through the Looking Glass

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

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

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

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

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

Growing Up

Yesterday was a huge day in our house. Mommy had been working with Gommy for a year on eating solid foods (one of the side issues related to PMG we are dealing with is a hyperactive gag reflex...dinner time typically involves a lot of throwing up). We'd tried puffs, chunkier applesauce...everything you could think of, and really nothing ever worked. It would all end up with a couple of bites and then a lot of throw up (followed by Gommy smiles and giggles).

Sunday, Danielle gave Gommy tiny slices of apple, which he willingly took...he didnt really eat them consistently, but he put them in his mouth and kept them there for a while and didnt throw up. So yesterday, we took some advice from our OT and gave Gommy a bit of spaghetti.

Which he ate. Willingly. And actually enjoyed it. With minimal spit up.

I cant even tell you how much of an accomplishment this is for him and for us. Both on a physical (the simply physiology of eating) level, and an emotional one. Both D and I have wondered whether he could do it. Whether he'd be relegated to a life of just eating purees. And yesterday proved that he actually could do it. Mommy cried. Daddy fist bumped. Tooties danced. and Gommy laughed and cooed.

Combine this with Gommy standing up much more (with support), and we're coming to the realization that our guy is growing up, which leaves me melancholy. Both D and I would have all the babies in the world if we could. Sleepless nights aside, there is nothing better than babies. And maybe God knew that and blessed us with a guy that we could hold and cuddle like a baby just a bit longer than most (Tooties is too quick for me now). But now even Gommy is growing up out of that baby phase...isnt that the conundrum of parenting? On one hand you do everything you can to help them grow up, but then on the other you're secretly wanting them to stay little for rest of their lives.

Ah well. No need to get too emotional.

Back to the point. Gommy ate spaghetti yesterday for the first time. He enjoyed it. Yesterday was a fantastic day.

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.