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.