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.

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.