Blurred Lines

We once referred to our Seattle specialist as the Justin Beiber of neurologists.  It turns out he was more like Miley Cyrus, twerkin' on errbody while they tryin' to sing they song.

We went.  We saw.  We were conquered.  It turns out that it does not actually rain very often in Seattle.  Those are just the tears of all the crying angels.  Or maybe its the tears of puppies.  Either way, its a pretty terrible place.

We went to see the doctor that was supposed to be the best.  Well, maybe he would have been better if he had had a cup of coffee.  He spent half our appointment yawning and the other half telling us all the things our son would never do.  Things like walking, talking, thinking, or eating.  The only good news he gave us was that while Dominic would almost surely have seizures, he may be a good candidate for having the his brain cut in half to stop the seizures.  Well, that's just swell.  Thanks, but I think we will hold out for the medical marijuana treatment of seizures.  This is actually something that is making huge leaps in other states.  They decrease the hallucinogens and increase the cannabis.  It is actually proving very effective for in-retractable seizures, which is typically what comes with our type of PMG.  He did say that because of Dom's area of damage, there was a possibility that puberty could stop the inevitable seizures.  I think we will hold off for that option, Doc.

It was a terrible appointment where we felt that he largely ignored Dominic's current abilities and just gave us the standard textbook terror.  Thanks, Doc, but I won't scare that easily.  He also talked about Dominic's life expectancy.  This is something we never speak of.  We are aware of the realities, but we don't speak of them.  At this point, we have been fortunate to have no real medical problems that can be associated with PMG.  We did get some good recommendations for specialists that we will need to see that could ultimately be crucial to Dominic's treatment if he develops medical problems.

We also got our results back from the CDC to confirm that Dominic's PMG was caused by cytomegalovirus (CMV) while I was pregnant.  If you are not aware of the risks of CMV, you should educate yourself.  CMV is a common virus that 80% of people get.  It is especially common in children under 3.  Once you have it, it never leaves your system (much like chicken pox), so you develop immunity to further infection(typically).  It is a very mild virus.  Except if you are pregnant.  I never even knew that I had it.  There were no symptoms.

Overall, it was a waste of a trip, but we did get our new diagnosis, which is what this guy is really good at.  We went from unilateral PMG (one-sided, almost best case scenario) to bilateral, asymmetrical diffuse PMG including the perisylvian region (aka everywhere, worst case scenario).  The perisylvian region controls the ability to eat and speak, so that was a huge blow to us.  Although, his right perisylvian region is only half damaged.  Based on the fact that he doesn't drool, it appears that his right side may be taking over, so we have hope that he will eventually speak and eat solid foods.  We had always known that Dominic was doing really well for having unilateral PMG; considering he has diffuse PMG, he's clearly not messing around.    

We don't give up that easily and neither does Dominic.  Plus, I don't plan on telling him any of the things he won't do.  I think I'll let him figure that out for himself.

Dommy Football

I got a little story for you ags...

With everything going on with our life, I think a lot about people and whether people are inherently good.  Naturally, I wonder how people are going to treat my Gominic.  I question if he will have any friends, I wonder if he will ever have a relationship with a girl.  I may not ever quit wondering those things, but today for the first time, I was able to know that no matter how our story ends, people are good.  And people will always care about my Gominic.

For those of you who have followed our story from the beginning, even before there was much of a story to tell, you know that we have often referred to our Dominic as "Dommy Football" or as Vincent would say "Gommy Football".  In the beginning of our story, there were helmets and there was no scary diagnosis, and we could truly believe there would be real helmets in our future.  There may not have been real helmets, but there was a real football.

A friend sent a package full of wonderful things (including this football) to cheer us up.  I cannot tell you how much it meant to us.  Sometimes we feel like we walk a lonely road.  It is stuff like this that reminds us that people care.

This story would be amazing and happy and wonderful if it ended there, but there was so much more kindness involved.  You see, our friend did not buy this football for us.  He went to a lot of trouble to put this together.  He worked some connections that he had that led to Johnny.  He was hoping that Johnny would write a little note for us.  But Johnny did much more than that.  We are not sure if it was Johnny himself or perhaps the Manziels, but one of them bought this football for our very own Dommy Football.  Johnny signed and personalized this football in the middle of the entire country criticizing him for doing this very thing.  He took the time from his busy life to make a little boy feel special.  People are inherently good.  Thank you Matt and Johnny for reminding me of that today.

Also, don't speak ill of Johnny in my presence;  he deserves sainthood in my book.

Today

Today I feel negative.
Today I was told my son may not walk.
Today we went to Seattle.
Today we saw an expert.
Today I felt excited to see him.
Today I thought he might change my world.
Today he did.

Today he told me that my son will at best be mildly mentally disabled.
Today I cried.
Today he told me that my son's microcephaly would follow the same curve and not get worse.
Even today I am vain enough to be thankful that he will retain his good looks.

Today my world was destroyed once again.
Today we got a worse diagnosis than the first.
Today I felt disbelief.
Today I choose to ignore most of what I have been told.
Today I heard someone talk about my son's life expectancy.
Today I choose to ignore him.

Today I wonder about my other son.
Today I wonder what type of a relationship he will have with his brother.
Today I wonder if I should give them another sibling.
Today I wonder what happens when I'm gone.
Today I will live forever.
Today I wonder if its all bullshit.
Today I know my Gommy.
Maybe today this doctor didn't know shit.

Today I realize I may not be the supermom I thought I was.
Today I cried.
Today Gommy skipped a nap.
Today I wonder what would have happened if he saw Gommy on a good day or a normal one.
Today I wonder if my son will be able to talk.
Today I saw kids living the future of my son.  I'm just not sure which ones they were.
Today my world was crushed.
Today I feel sad.
Today I feel overwhelmed.
But today I wouldn't change Gominic for the world.

Tomorrow I start over.
Tomorrow I forget today happened.
Tomorrow I enjoy my son.
Tomorrow I'll be supermom again.
Tomorrow is different.
Tomorrow is Gommy's.

Dear Twisty

I dont know when you'll read this (and I do hope that you blog soon because you have done so much good work over the past few weeks/months that everyone needs to know about), but this note is note just to you and only you. 

Too often when I try to thank you for everything that you do for your boys (myself included) it comes out as "GOMMY DO GOOD TODAY ME THANK YOU FOR ALL YOU WORK" or something else cave-manish. Rarely do I take the time to sit down and articulate just how much I love you and appreciate you for who you are. 

Our life has been a love story. It started off as just the two of us, and then we included a sweet (and now feisty, tooties) and then we brought in our adorable gommy. I look at this blog as a living manifestation of that love story, which is why i try and keep it updated. It's a remarkable thing to have a repository for all of the emotions we've felt over the past 4 or so years. 

But going back to that theme of the love story...your love has been the thread that has carried us through the past few months. Your love is the reason that our sweet gommy is doing what he's doing. Everyday I see you working as hard as you can to make him work as hard as he can to be everything he can and will be. Everyday I see you critically analyzing your effort to see what you can do better the next day. Everyday I see that the choices you make in life revolve around what is best for your men (myself included), and words will never be able to express how much i appreciate and admire you for that. 

Admire is the right word. Your efforts are heroic, and I'm self aware enough to know that I'm incapable of doing the things that you do. Not saying that you love our sons anymore than I do--but your love empowers you in a way that I cant even fathom. Your constant drive, your constant energy, and your constant single minded focus of raising our sons to be the best they possibly can be...well...it inspires me. I'm so very lucky that you're my wife, and I'm so very lucky that you are the mother of my two beautiful boys. 

Our family is perfect. And we are perfect because of you. We will be perfect because of you. Mitch Albom said, "When you look into your mother's eyes, you know that it us the purest lovve you can find on this earth". I'll take that one step further. When our sons look into your eyes, or hell when i look into your eyes I see the purest heart, and a single minded, unselfish desire to help all of us be the best we can be. 

You are my heart, my soul, and my hero. I'm so very blessed to be your husband. 

Love,

Poppa. 

One small step for man

One giant douche for mankind...

I witnessed something today. Something that was truly terrible. It was such a raw form of bigotry that left my day disrupted and left me shaking for hours in anger.  I saw my old high school principal refer to special needs kids as defective on Facebook. You sir are the only defective person I see here.  I do not and will not stand idly by and watch someone like my son called anything ugly. I have warned on here before that if you come at mine, I will come at you.  I sent the following email to his boss and copied upper management:



Mr. So and so,

I was very disappointed to see a reference one of your employees, Blah blah blah used on a social media site refering to a special needs person as "defective".  I have attached a screen shot of the incident for your reference.  In the media age that we live in, it is very important for employees to maintain a professional demeanor at all times espcecially on public forums such as this.  

I certainly hope this is not a tolerated way to refer to individuals who are differently abled.  I find it extremely disappointing that a person in a management position would find social media an appropriate venue to discuss his hateful message.  By representing himself in this manner online, he not only brings into question his own integrity but also the integrity of an employer where this public behavior can appear to be deemed tolerable.

As a mother of a special needs child, active in many support and advocacy groups, I try to send a message of hope and acceptance.  Small minded, bigoted statements such as these made on public forums greatly diminish the message we are trying to send.

I thank you for your time and appreciate that you will handle this situation as you deem appropriate.

Sincerely,

Twisty Yamagucci

(Names have been changed because Twisty knows better than to spread her hate in any way but anonymously).

His post was later removed, and I feel accomplished.  Gomminic, I promise you this, no hate or prejudice will go to you untouched.  I will take on those bastards one bigot at a time.

As long as its healthy

Today we had Dominic's appointment with the audiologist (which he passed!).  I've gotten used to the terrified looks and condolences (which I typically just ignore and judge later from the comfort of my own home) when people hear about my beautiful son, but today I was hit with the unexpected. A completely. appropriate. response. You know I'm serious because I used periods between words.

Today our new audiologist who clearly had no idea what I was talking about when I told her my son has congenital CMV, despite her valiant efforts to convey otherwise, simply said to me, "my husband and I are thinking about having a baby. You never know what to expect."  It wasn't her words that were spot on; it was her conveyance that she would not be horrified to be in my position.  For that I thank you, Dr. W. Well done. Well done.