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.

determination

I don't know if you can tell through our writings, but my wife and I are fairly optimistic people. We're hell bound and determined that we are going to do everything we can to give our sons a beautiful, happy and fulfilling life.

But of course with everything going on, sometimes we question our boundless optimism and wonder if it's misguided...and whether we're setting ourselves up for a big fall. When that happens, I remind myself of a habit Gommy has that involves his little tongue.

To preface, Dommy pants has been rolling all over the place and scooting forwards (army crawling). It's been fantastic to see. So now, in an effort to encourage him to move around, we'll put him on the floor and put his favorite toys (a toy remote and a toy laptop) nearby...close enough to where he can get to it, but far enough to where has to work for it.

Here's what happens when we do that. We'll hit one of the buttons so Dommy knows that it's there (it's normally out of his peripheral vision). He'll strain to look at it, and at look of recognition pops onto his face, and you can just see him thinking "oh...i'd really like to play with that". Then comes the best part. He sticks his little toungue out of the side of his mouth with fierce determination, flips over on to his belly and makes his way over.

Getting there isnt necessarily always pretty, but that little tongue...that little tongue and the look he has on his face while he's getting there is just awe inspiring. Him sticking that tongue out is basically him saying "giddy up y'all, it's time to go to work and i WILL NOT be denied"...which he never is.

This kid has grit. This kid has determination. This kid has an unyielding inner strength that's inspiring to watch. With that kind of fire in his belly, the sky is the absolute limit for my gommy.

Dear Anonymous

Dear Anonymous,

I don't appreciate you.  I won't say I don't like you, but I don't appreciate you.

Why did you write the things you wrote?  Are you worried about my salvation?  Worried that my relationship with God is not like yours?  Are you so insecure in your faith, that you need everyone's faith to look the same?

When you wrote your first comment I could respect that your faith is different and led you to blame our situation on the devil; can you not accept that my faith leads me to believe that our situation is a gift of God?  Why do you feel the need, even after we explained how we view our life as part of God's plan (and not an attack from the devil) to correct us, saying "we walk around ignorant... and can you not stretch your faith"?  Who are you to try to take away my method of coping with this alternate lifestyle that I believe was blessed on our family?

Mahatma Gandhi said, "I like your Christ, I do not like your Christians.  Your Christians are so unlike your Christ."  This quote sums up how I view your entire rant.  Why do you use a message of hate to send a message of love?  If you truly wanted to help, could you not have sent encouraging words, instead of correcting me to tell me that the devil created the way my beloved son is?  I don't think your intent was to encourage me.  I think your intent was to show how wise you are in your faith.  "Preach the Gospel at all times, and if necessary, use words."  That is my advice to you.

"The very fact that your family is resistant to what the Docs say is his future based on his symptoms tells me you don't accept this journey as a blessing."

Really?  Do you try to help your child with their struggles?  Does that make your view of parenting any less of a blessing?  And what do you know about my journey anyways?

"I would not want to serve a God that put something potentially life threating on my child just to teach me something."

Ok, so you just want to serve a God that would put something potentially life threatening on others children and His own?  Did God not tell Abraham to kill Isaac?  Do you not serve Abraham's God?  Did He not sacrifice His own Son for us all?  Is is so hard to believe that He would create Dominic differently for a purpose?  Can you not stretch your faith to believe that?

Why would you assume that God views death as a negative?  Does He not ultimately want my son with Him?  Is that not all of our goals?  We as christians are taught to triumph in death.  No, I don't want to lose my son, but isn't that because I am left behind?

"Would you hurt your baby to teach him? No."

Yes, yes I would.  Right now I am sending my other son to a new preschool because that is what is best for him.  He does not understand why I would take him away from his beloved teacher and all his best friends, but he's growing up.  It's time for him to go to school.  He doesn't understand, and I am hurting him every day by pushing him to grow.  Do you not put your child in time out?  Does that not hurt them to teach them?  So why can't God put situations in our life that aren't easy and maybe we don't understand, but are ultimately for our own good.

"I am not condemning you or saying your baby is bad or unwanted but God creates everyone beautifully and wonderfully.Couldn't you stretch your faith farther to believe God wants Gommy talking, walking, running, living a long life instead of the latter?" 

What the hell are you even trying to say here?  That God did not create my son beautifully and wonderfully?  Instead my son was created by the devil since you believe he created my son's brain structure?  One of my rules of life is that if you have to say it, it's not true.  There are no exceptions to this rule.  For instance, if you are wearing a shirt that says sexy or princess, you are neither of those things.  So, if you need to specify that you don't think my baby is bad or unwanted, you clearly do.

Who are you to say that God does not find value in my son's condition?  My faith leads me to believe that my son is who he is because of God.  This was God's intent for my family, not that God would stand idly by while Satan ate my son's brain.  Why do you assume God sees not being able to talk or walk as a negative?  Just because you do?  Do you really believe that God views my son as any less perfect than your child?  Why do you imply that my son has less value throughout your post?  My son is every bit as good and valuable as your child, even if you do not view him that way.  God clearly does not feel the need to create us all the same or He would have created us all as good looking as Dominic.  Polymicrogyria translates to mean many small folds.  It simply describes the shape of his brain.  There are certainly symptoms associated with this brain structure, but who are you to say that fewer folds are better?  Can God not choose to create someone with a brain different from your own?

Perhaps I have not accurately conveyed my concerns for my son or my own motivations.  I don't care if my son does not walk or talk.  I am only concerned that my son will not be able to do things he wants to do.  That is why I work so hard with him now.  I have no idea what he will want to do later, so I am trying to give him all the tools to do what he wants to do.  If he doesn't care if he walks then neither do I.  If he wants to communicate with me solely with his perfect smile, well then I'll give him one right back.

So you see, my son couldn't have been created with any help from Satan.  Looking in his eyes is the closest to God I've ever been.

Love,

Twisty

Frankincense, Gold and Myrrh

A few days ago our blog went viral.  Although I started this blog to bring some type of awareness or even just humanity to our situation and others like ours, I never actually thought I would reach people on a larger scale.  I guess God had other plans.  I realize most people viewed our blog because they were interested in Johnny and not Dominic, but I hope that some of you will stick around and enjoy his journey with us.

Dominic is still too young for me to explain to him how, for one day, he was a celebrity in his own right, and he had the whole world (ok maybe not the whole world, but it kinda felt that way) rooting for him.  But I have always said that my Gominic is extremely intelligent and off the charts socially.  At this age, he should not even be ready to play next to others, but he has already started trying to play with them.  He amazes me every day.

Somehow on the day that everyone was reading his story, I think he knew.  I think he knew that the world was rooting for him, and I think he knew that they were watching. He started playing peek-a-boo.  And I am not talking about laughing at us playing peek-a-boo; he legitimately started pulling a blanket over his face, then jerking it down quickly and laughing uncontrollably.  Then he started rolling across his mat to get to toys.  He would roll from back to tummy and back again.  You could just tell on his face that he was practicing.  Then he started trying harder to come into the sitting position from lying (it will be a long time before he has the ability to do this, but he keeps trying just the same).  You could just see the extra determination on his face.  Then he started taking steps in his walker (he has always had trouble moving his legs independent of each other).  And no, this is not a legitimate medical walker, and maybe I am a terrible mom for ignoring all the medical warnings to not let your kid use a walker.  When your kid is special needs though, you just kind of throw all advice out the window.

But I think he knew.  If I could read his mind, I think that he was thinking, "Alright, you guys want a story, I'll give you a story".  He knew that the world's eyes were on him and he was ready to do work.

I also found another treatment.  I have realized that I am kind of a treatment-whore.  I guess the first step is admitting you have a problem.  Our latest thing is essential oils.  Apparently the regimen for Cerebral Palsy actually involves rubbing frankincense and myrrh on your child.  I figure if it was good enough for Jesus, it is good enough for Dominic.  Makes me wonder if perhaps JC had some spasticity as a baby.  I'd imagine it'd be pretty difficult to fit the essence of God into a little baby.  I think it'd make anyone tight.  Either way, he seems to enjoy the oils, and it has a pleasant tingling sensation that seems to relax his muscles.

On another note, I read that frankincense is good for wrinkles, so naturally I rubbed it on my entire face last night before bed.  Poppa told me I smelled like an Indian temple.  That can't be good for our marriage.  So if you notice that I am looking especially young lately, its likely the frankincense.  It's certainly not from the abundance of sleep I am getting.              

1 year

Happy Birthday Gominic!  This has been the happiest year of my life.  I wouldn't trade you for anything.  Here is a look back at all your awesomeness...

Jet Lag

Poppa here.

I see no value in thinking about the future. My method of making sense of what's going on with Gommy is to remain grounded in the here and now. The present is filled with fantastic things happening...like yesterday our sweet gommy rolled from back to belly and pushed up in to a crawling position as if it were nothing. The present is filled with lots of happiness.

The future on the other hand is filled with uncertainty, and is therefore petrifying to me. Schools, bullies, social life, family life...all that stuff is something I don't like thinking about because I have no real influence over it. So the way that I parent is by being intensely focused on this moment right here...almost to a fault.

To that end, getting over our incredibly depressing (no other way to phrase it) Seattle trip was similar to getting over jet lag. For those three hours at the clinic we were face to face with our future. We were thrust into a completely unfamiliar world...filled with concerns about saving enough money and life expectancy issues among other things. It was terrible. Beneficial, in some senses, but terrible all the same. Adjusting back to our normal life after having spent time in a completely different time zone (aka the future) was difficult, but I think we're at a good place now.

Here's the thing...were those projections based on who Gommy is, or simply based on a static image of his brain? I think the latter, which makes me quicker to not necessarily dismiss them, but take them less seriously. A picture of his brain does not properly convey how smart, capable, and driven my beautiful son is. It cannot, and it will not. So I refuse to accept a future based on one static image.

In the grand scheme of things, projections don't mean much. This past weekend I was flipping through pictures of our boys, and I found a few from well before our PMG diganosis. If I were to have made a projection based on that static image, I would have said "well this kid is happy, and giggles uncontrollably (for some reason) when i stick my nose in his mouth. He's also more social than his brother was at this age. He's a little tight, but nothing overly concerning"

That's it.

So what's changed? Maybe we know a little more about his brain and what it looks like, but we have no idea what its capable of...so why bother pretending that I can predict the future, for good or for bad? Why put myself in a different time zone when I know that I struggle with jet lag?

When Gommy flipped over and pushed up, Twisty and I were celebrating, fist bumping and wiping tears. But Gommy was going about his day as if it were nothing because NO ONE HAS TOLD HIM HE'S INCAPABLE OF DOING REMARKABLE THINGS. He's happy. He's capable. No one has told him that the future is sad or scary or anything. So if he doesn't care about the future, why the hell should I be freaking out about it? Why on earth should my ego, my fears, my doubts, and my own neuroses impact my approach to the here and now?

I'm over my jet lag. I'm done with the future. Our fam is too damn busy kicking ass in the present.

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.

I got 99 problems but a flight ain't one...

Ok, maybe I don't have 99 problems, but I have been meaning to update for awhile because we have had some amazing things happening.  We recently booked our flights for our trip to see Dr. Dobyns in August, and by we I mean my dad gave us a very generous gift:)  Thanks, Poppi!  Not only did he book our flights, but he booked us in first class for the trip there!  This kid is seriously going to get so full of himself.  First he has his name on a race car, now this?!  I look forward to upsetting all the other passengers in first class by sitting up there with a baby.  I just hope some one gives me some judgement for bringing a baby to first class.  I have just been waiting to tell someone, "Oh, I'm sorry is my brain-damaged child bothering you?!"  It's pretty much going to be my get out of free card for all things ever.  I have already used it to get out of a crossfit membership.  I am pretty sure I am actually a really terrible person:)

Back to updates, our first good news was two months ago when we had our first cognitive evaluation.  At the time, Gommy had just turned 8 months old.  We were having him evaluated because we had some concerns about his eating abilities (which I now think is mainly preference and stubbornness; he is my son:)) which is directly related to a child's speech prognosis.  He actually tested at a 7 month level (only one month delayed)!  This is very exciting.  It is literally the first service we did not qualify for!  Yay for getting rejected!

Since then we have continued with occupational, physical and massage (mixed with Cranial Sacral) therapy.  He also sees a chiropractor and I do kinesio taping with him at home.  These things have all been incredibly helpful, but recently I found a game changer.  I have started doing the Anat Baniel Method with him.  In one week he started sitting up (although he still needs support from his hands most of the time, and still has very little reflexes), turned pages of his favorite book using BOTH hands together, said BABABA (which is perhaps my biggest fear answered; hearing him talk has never been a certainty and we will never take his words for granted), and is able to hold himself up in the crawling position.  His occupational therapist is one of my most trusted "advisors", and I can always count on her to give me good advice and not sugar coat things.  She is probably the only reason we got a diagnosis as quickly as we did.  In his first OT appointment after starting the AB method, she actually said she thought he did not need speech therapy for the first time ever, and he hadn't even said BABABA at that point!  This may not sound huge but it truly is.  I cannot wait until his appointment tomorrow so she can see him sitting up and babbling.  She is not going to believe the transformation.

It's funny how our reality and my perception has changed in so many ways.  It feels like ages ago that we got this diagnosis, but really its only been a few short months.  I used to worry about everything.  In fact, when Vincent was a baby, I was convinced he would die of SIDS.  I was not scared of it, I was CONVINCED.  I don't even think I enjoyed the newborn phase, I anxiously awaited until he was 8 months old and the risk dropped slightly.  I did not go anywhere without his angelcare monitor.  Fast forward to my sweet Gominic, I have everything in the world to worry about, but I don't know that I actually worry about any of it.  One of the things that I don't talk about often is the fact that our sweet Gommy could go deaf at any time.  Yes, you read that correctly.  One of the side affects of congenital CMV is hearing loss up until early school age.  Sometimes it blows my mind thinking about stuff like that.  Our world could change completely tomorrow.  I just choose not to worry about that today.  Tomorrow is never guaranteed anyways.

My perspective has changed completely on so many things.  I remember when I was pregnant or talking to pregnant women, I used the phrase "as long as its healthy" so many times.  I never stopped to think about what that really meant.  Now whenever I hear that, I can't help but smile and say that the alternative is really not that bad:)  Perfect is in the eye of the beholder.

In some ways I feel like all this is God's way of evening out the playing field a little.  My husband and I have long known that we have something very special.  They don't make love stories like ours very often.  We have always jokingly (or seriously, whatever) referred to ourselves as the modern day Cosbys.  We both have successful careers, have a kick-ass relationship not to mention we are inter-racial.  We have been pretty much dominating life.  We actually recently started our own in home church because everyone at our last church kept trying to be friends with the interracial couple.  We were not interested.  Anyways, God needed to throw us a curveball, so He did.  I don't know if He was anticipating that this curveball was going to make our lives that much more awesome, but it did.  You know what was missing from the Cosbys?  A kid with Cerebral Palsy.  That's right, Bill, take that, because we no longer refer to ourselves as the Cosbys; now you should be referring to yourself as the old Singhs.  Plus, have you seen how good looking Gommy is?  It just wouldn't have been fair for him to get those looks and a fully formed brain.

I will say that there are still times when things are difficult for me.  Today we took the boys to the playground and there was a kid a few months older than Dominic there.  He was of course walking and doing all things normal things kids do.  I don't think it will ever get easy to see that.  At this point I am pretty insulated from other babies, but someday it won't be that way.  What is funny about the situation is that I could see the parents looking at Dominic to compare their son.  It has been confirmed to me through multiple sources that Gominic is truly the happiest baby of all time.  He laughs constantly or shrieks at you in delight.  He literally cooed at a lady taking his blood, not once but twice.  He is quite the charmer.  He has always been off the charts socially.  I could see the family looking at him laughing on the swings and comparing their son who was not expressing the same delight.  Um, dude your son can walk and will likely talk, count your blessings.

I think as parents we are all going through the same things.  We may have different walks to get there, and we may even end up in completely different places, but I think there is some parallelism between our paths.  Terrible person though I am :) we aren't that different you and me.       

Seeing beyond what is...To what could be

I teach a leadership course, and one of the definitions of a vision that we provide is the art of "seeing beyond what is, to what could be". Additionally, i teach about a skills assessment called "strengthsquest"...and one of the primary tenets of that program is that attempting to only fix your weaknesses leads to failure prevention. building on your strengths leads to success.

I know that the majority of folks who read this blog are family and friends...but if there are any folks out there with kids with CP, please watch the video below. On first watch i found it mind blowing. on second watch, i found it inspiring and incredibly motivational. the video is a tedtalk from Dr. Karen Pape. she discusses the concept of "neuroplasticity" with brain damaged children:

I took notes during the second round of watching this video in an attempt to summarize the content, but i realize now that summarizing would be impossible...so instead i'm just going to share the bullets that i took away:

• Our expectations determine perception and our perception determines the way that we work with our kids
• Doctors are trained to look for problems, and to an extent that's what we, as CP parents, do as well.
• Instead of looking at correcting inabilities, we need to look at our children as elite athletes. We need to be coaches. Doctors look for problems. Coaches look for possibilities (chew on that one for a second).
• When an adult has a mild stroke we expect them to fully recover. When a child has a stroke (either at an early age or in utero) we think that there is no possibility for "recovery" only "rehabilitation"
• Kids can learn lower level skills (like walking) when their brain is still in the process of recovery...and over time that lack of ability to do something (like walk) becomes a habit. It's not that they CANT do it, it's just that they've practiced the same habits over and over again.
• We cant change habits by working the habit. Encouraging a kid who walks badly to walk more teaches them only how to walk badly better. 
• So how do we reframe teaching? How do we look at our kids in terms of potential instead of correction?

The notion of coaching vs. doctoring resonates with me. Dr. Pape shared an example of a child with hemiplegia who she expected to have issues walking...and sure the kid had some issues walking...but he could run like the wind...because NO ONE TOLD HIM THAT HE WOULDNT BE ABLE TO RUN! 

Absolutely fascinating. I've often said that we have no idea the amazing things that Gommy's brain is capable of and this video further reinforces it. I have to figure out just what "not training him to do bad better" means to me, but we'll figure it out. 

Last thing...the wife and I have a severe lack of patience in general. We're not really folks who like to wait. And I think that part of that personality trait of ours has translated into how we work with our kids...we see something that we think could help either one of our kids, and we think "well, why shouldnt we get it now?!?!" and immediately go out and buy it. 

In exploring that feeling a little bit deeper, and in discussing it with twisty, I think I've determined that having a special needs kid has led to a irrational and unnecessary sense of urgency, almost a twisted butterfly effect. We think that doing something now, meaning RIGHT NOW, could benefit him in 5 years...and the converse is true as well...not doing something right now could negatively impact him in 5 years. So of course the answer is to do it RIGHT NOW. And from reading this blog, I think you know how determined we are to do everything we can. 

But in truth that needs to be checked a little bit. There certainly is some truth to the notion of wanting to do everything we can to teach and love on our two little men...but that sense of urgency is often fueled more by fear and almost a manic desire to make sure we're parenting as hard as we can, instead of a rational sense of what today means in terms of the future (if that makes sense). It's good to be determined. I'm not sure that it's good to be impatient, so we're working on balancing the two out. 

irrrational musings

this post is irrational and i know it. so bear with me.

we went to the doctor this weekend for gommy's 9 month appointment, and he's doing extremely well. he's following his growth charts (for the most part), and has taken the slightest dip in head size.

his brother had a huge melon. gommy's was well with a normal range, but on the small size. i remember when he was born thinking that he 1) looked small and 2) looked proportional...which is different because babies normally have an orange on a toothpick for a head. but again, it was well within the normal range. the doctors didnt mention anything about it, and it didnt really register as a red flag in my mind...just one that i kind of went "huh" and moved on with.

a part of PMG is microcephaly, meaning smaller sized heads. rationally, gommy does not meet the criteria to be considered microcephalic. rationally, it's possible that his head charts are going to be off because of his time in his cranial band. rationally, there is nothing to even pay even the remotest amount of attention to in this situation.

irrationally, i should have known. i should have taken the next step in logic when i thought he looked "proportional". irrationally i should have had some sort of fatherly spidey sense that something was going on.

back to rationally discussing my irrational concerns. could we have done anything? no. the damage had been done. he's doing extraordinarily well...to the point where every doctor that we see is almost shocked about how interactive he is, and how physically active he is--and not just for a kid with CP--in general. Gommy is doing great.

but irrationally again...there are moments where i feel an extraordinary amount of pressure as a parent...which is not a bad thing really because parenting should be a huge responsibility. and the pressure doesnt manifest as a burden by any stroke of the imagination, but it feels like in order for gommy to be the best he can be, i need to be the best i can be for him at all times. and not noticing...rather not giving creedence to the thought i had about his head being proportional makes me feel like i let him down in some odd strange sick way.

and i know i didnt. i know that. but the irrational part of me hasnt stopped thinking about it since our doctor's appointment.

Inspirations

I will post an update soon, because its been an incredible past couple of weeks! Today I wanted to share something that has been shared with me lately that has really touched me.  Its a story that describes me to a tee.  Big poppa agreed that it could have been written especially for me.  I kinda felt like it was...

Most women become mothers by accident, some by choice, a few by social pressures

and a couple by habit.

This year nearly 100,000 women will become mothers of special needs children.

Did you ever wonder how these women are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation

with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger:

"Armstrong, Beth: son. Patron saint Matthew

Forest, Marjorie: daughter. Patron saint, Cecilia

Rutledge, Carrie: twins patron saint - gave her Gerard. He's used to profanity"

Finally, he passed a name to an angel and smiles, "give her a special needs child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly. Could I give a special needs child a mother who doesn't know laughter?

That would be cruel."

"But does she have patience?"

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wears off, she'll handle it.

I watched her today. She has the sense of self and independence so rare,

and so necessary in a mother.

You see, the child I'm going to give her, has his own world. She has to make it live in her world,

and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "no matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods, "if she can't separate herself from the child occasionally, she'll never survive.

Yes, here is a woman who I will bless with a child less than perfect.

She doesn't realize it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says "Momma" for the first time, she will witness a miracle and know it.

When she describes a tree or a sunset to her child, she will see it as few people ever see my creations.

I will permit her to see clearly the things I see - ignorance, cruelty, prejudice,

and allow her to rise above them.

She will never be alone. I will be at her side every minute of everyday of her life,

because she is doing my work as surely as he is here by my side."

"And what about her patron saint" asks the angel.

His pen poised in mid air ................

God smiles. " a mirror will suffice."

new gadgets!

one thing that no one ever tells you when you first start having kids is that you dont need every single gadget out there. oh sure you might use that bouncer once or twice, but you wont need it, and if you dont have it, you wont miss it.

i think the reason that they do that is that for every family (like ours) who bought a bouncer to console a crying baby and used it twice then put it in the closet, there's another family out there whose kid would only sleep while gently being rocked by a bouncer.

anyways, point being is that we have damn near every single baby gadget known to man. swing? got it. bjorn? got it. bouncer? got it. bumbo? got it. bassinet? yup. pack and play? oh yes--actually we have four of them spread out among grandparents. and every one of these seems mandatory...but if we didnt have them, we wouldnt miss them.

now that our kids are growing up, we're starting to think about what to do with all of these gizmos that we have. and we keep thinking about how we need to declutter and simplify...but with that conversation in the back of your mind, please remember a couple of things about the authors:

1) we are not adults
2) we have issues with impulse control
3) lol no again we are not adults

the other day twisty was looking online and she found a therapy swing called a "wingbo". picture is below:

the swing runs about $250 and twisty thought it would be something good for gommy to have. basically it forces kids on their elbows and tricks them into doing tummy time (dommy can do it, he just chooses not to).  legs go towards the back, elbows on the front.the swing can support up to 50 or so pounds. so we talked about it, and thought, yeah we should think about getting one at some point. the 250 was a sticking point with us because, although we can afford it, as you can imagine we have a decent number of medical expenses...so it was filed into the category of "would be nice but still need to think about it"

well it stuck with us. until this past week, when, legitimately, we decided to not be rationale and just buy the damn thing. in essence we put our YOLO hats on and took the plunge and bought ourselves a wingbo.

it got here yesterday, and after assembly we put our little stinker in there for him to hang out while we were getting ready...and HOLY CRAP IT IS AWESOME. THIS GADGET IS THE BEST PURCHASE WE'VE EVER MADE.

seriously. he only lasted about 30 minutes or so, but it was 30 minutes straight of him being up on his elbows, head up, legit tummy time which is more than he's ever done. the poor guy was probably pooped after we took it out of him (a good comparison that twisty made is that he probably felt like he had been doing planks for half an hour). and he was happy doing it! it's now going to replace our excersaucer as his go to hang out place every morning and is going to do wonderful things for his neck and trunk strength.

so the moral of the story? sometimes it's fun to buy things that you never knew you always needed. sometimes they are actually the exact damn thing you needed. sometimes it's ok to lack the ability to control your impulses. and lastly, it's been really hard not to use the phrase "schwing bo" in writing this blog.

lots of good things

the past few weeks have been really good ones for us...filled with lots of good news and good times with our babies. below is a quick recap.

two weeks ago we had the appointment week from hell (meaning not that the appointments were bad, we just had so very many of them). 6 total appointments including one trip to austin. By the end of the week we werent tired of appointments, we were just tired of feedback, if that makes sense. From our observation, therapists typically work from a deficiency perspective...meaning yes your kid has made progress, but now that we're here we still have work to do. And we heard a lot of that that week. Gommy is doing really well, but we want him to do better, which is fine and all, but after a while, feedback just gets old.

so after that we had a good weekend of being outside in the sprinklers, and grilling out, and then we got to this past week. dom's vision screening came back positive--there are no physiological deficiencies. CMV (which caused the PMG) has a knack of damaging the eyes, resulting in scars that limit how well babies can see--but we had none of that. the doctor said that dom had no scarring (YAY!) and that any sight issues he might have are all neurological--meaning that with therapy they can be overcome. he still said that we'd have to do glasses, but let's be honest. i'm blind as a bat and twisty has bad eyes too. glasses were in this kid's future, PMG or not.

so one of the things the doctor told us to do was to take a look at vision therapy as a possibility. so we worked with our case manager, and set up an appointment to have dom evaluated by a vision therapist. we'd also been needing to do an evaluation by a speech therapist, so we decided to do them at the same time (AT THE SAME DAMN TIME? AT THE SAME DAMN TIME!--sorry. that's lyrics from a rap song. my bad).

so we had both therapists at our house, and the first thing that we did was the speech therapy evaluation. the nice lady asked us a ton of questions, observed gommy a little bit...took a few notes...and gave us some information. side note--part of the speech therapy evaluation is based on cognitive skills--meaning can he recognize mommy and daddy, does he react when we're angry etc. so she then told us that 1) he doesnt seem to have any issues feeding, so no need for speech therapy at this point and 2) cognitively he's at about a 7 month level right now, which is just freaking awesome because he's only 8 months old. follow that up with the vision therapist saying that dom seems only slightly behind where he should be but nothing at all to be alarmed about...and twisty and poppa finally got some fantastic news. so much so that mentally, poppa was doing a dance to the following song:

it was a darn good appointment. i think the other best part of the appointment was the therapists and our case manager gushing (i know that's not modest but whatever) about how twisty and i are really doing everything in our power to help our little gommy. i needed to hear that...because this entire time i've been struggling to think about other things that we can be doing. other folks to get involved. to hear someone validate our efforts as being as exhaustive as they can...well that felt good.

so yeah. good appointments. which was then followed up by a good weekend. there's more to detail about other stuff going on in our lives, but i'll do that on a later post.

Eyes and Fro-yo

This commercial made me smile, so I thought I would share.  It feels good to have special needs shown in such a positive light.  I think so many pregnant women fear having a less than perfectly healthy baby, but its the most incredible thing I have done.  Did I want a baby with special needs?  I wanted Dominic and all the crazy, lovable things that came with him.  Each of my men have given me something I needed in life.  Dominic completed that.

This morning Dominic had his eye exam in Austin.  Apparently, congenital CMV can cause vision problems.  The good news is that there is no scarring in Dominic's eyes so he is capable of 20/20 vision.  However, the doctor estimated that his vision was 20/80 right now or worse. The doctor also said that Dom presents with nearsightedness and an astigmatism which will eventually have to be corrected with lenses. I am not sure why some babies this age get glasses, but our doctor wants us to wait until he is around 3.  Right now he can only guess at his vision, and we could do more harm by giving him the wrong prescription.  At that time, I am going to get him the swaggiest baby glasses there ever were.  I wonder if Burberry makes toddler wear?

But on the positive side, there is visual therapy available for kids of Gommy's age to help him both see better and process what he sees better. At this point, the eye doctor thought his vision problems were primarily neurological.

I was telling my dad how our appointment went, and one of things I prefaced was that I didn't know if we were ever going to get "good" news about Dominic anymore, but in our little world this is good news.  It's funny how life changes sometimes.

While Poppa and Dominic were driving back from Austin, I decided to have a special mommy Vincent date.  We went to get fro-yo, and he loved it!  I let him pick out everything he wanted.  You could tell he felt really special when Mommy let him go pick a chair on his own while she paid.  It was pretty cute.  We had wonderful conversations about the yogurt pictures on the wall and how their TV must be broken "uh-oh tv broken!"  He also informed me that he had again kissed Sadie that day.  I am not sure what to do with that boy!  Then a random white, bald man walked in and Vincent said "Hi Daddy".  At first I thought he was serious, but he was using his "joke voice".  Either way, the entire time the man was there, he kept saying "Hi Daddy, bye daddy" and laughing hysterically.  It was pretty funny.

Also, Gommy had one of his voodoo appointments today.  This was cranial sacral therapy.  The premise behind this is that the therapist uses all the connective tissues in the body to navigate through the body and find blockages.  She then makes the brain aware of the blockages and the brain heals the blockage.  Is that not the biggest load of BS you have ever heard?!  I can't deny that something is going on though.  Today she let Poppa feel while he was releasing a blockage and he sure enough felt lots of heat and trembling.  At some point, I will have to post about the rest of the crazy stuff that's been going on at those appointments.

I am surprised and touched by all the views that my blog has had since making it public.  Feel free to message us, comment or whatever.  We are always here if you have questions about our sweet boy.  We obviously love to talk about him:)

Quack Doctors and Death Threats

Twisty here... My goodness how life has changed in the last few months.  When we got this diagnosis, I think I was pretty naive about what we were about to get into.  Although when you sit down with a doctor and they give you that kind of news, I don't think you can fully fathom any of it.  This beautiful new reality has now become our new normal, and I wouldn't change any of it for a second.

We are at the point now where we are willing to try anything and everything to help our Gommy.  He has anywhere from 2 to 6 appointments in any given week.  We have started trying unconventional therapies which I like to refer to as his voodoo treatments.  We also have an appointment scheduled with a homeopath and eventually I want to get him in to see an acupuncturist.  There are no lengths I would not go to for my sweet baby!  We have actually been seeing some results from Cranial Sacral Therapy.  It is generally recognized by the medical community as completely quacky, but I am starting to think there might be something to it.  We have been noticing slight differences in Gommy after treatments from being more mobil to being able to keep his left hand open which is huge!

I hear a lot of people tell special needs parents that God made them special so they could handle everything that goes along with having a special child.  I also hear most special needs parents say that they are just normal parents who care about their kids.  I disagree.  I think God made me especially suited for this purpose.  My family has long joked that I have a heart of stone, and maybe in some ways I do.   I think this is one of the characteristics that makes me a great special needs mom.  I am able to push my kids further if I know it is what is best for them.  I may be a little insensitive, but when I care about someone I care hard.  There is nothing I would not do for my family.  I mean NOTHING.  People say this all the time, but I actually would cut you if you messed with one of my men.  No, take that back, I would BURY you.  Literally.  Again, I know people say it, but I say it while holding a knife.  Haha, just kidding.


But seriously, dont try me.

I also don't tire easily.  I spend every waking minute that I am home working with Dominic and playing with Vincent.  Once they are asleep  we take care of ourselves and our house.  I now work 8-3 everyday so I can get extra time with them.  I also work Thursdays from 5-10.  I wouldn't trade it for anything.  After seeing my new found determination, Big Poppa told me that Dominic was going to reach amazing potential solely because of the love I had for him.  That stuck with me, and I don't take that statement lightly.  It has become my motto, and I think of it multiple times a day.


A couple of quick updates on my boys.  Dominic is almost sitting up on his own and is playing with toys like crazy.  He still favors his right hand but is using his left hand more (if I force it:)).  Vincent is perhaps the smartest two year old alive.  He speaks in paragraphs.  I don't even know if there is any words he doesn't know.  He not only knows his alphabet, but can also identify all letters in uppercase and lowercase.  He got bored with us quizzing him, so he now quizes me.  Bring it Vincent, Mommy invented the alphabet.  He also knows all his colors and can count up to 20, except for 6.  Never six.  It is the devil's number after all.

The other day, I was taking him to school, and he noticed Gommy wasn't in the car.  He asked, "where did Gommy go?" I said, "Gommy is sick, so Gommy is staying home with Daddy.  Remember when you were sick and stayed home yesterday?"  Vincent said, "Oh, Gommy need medicine, how 'bout that?".  Um, yeah Vincent, how about that!?  How does he learn these things?

I will leave you with one last Vincent conversation since nap time is almost over.
Vincent:  Poppa (insert Poppas actual name here), we need batteries!
Big Poppa and Twisty (looking at each other):  Did he just call you Poppa?
Twisty: Vincent, what is Daddy's name?
Vincent: Poppa
Mommy: Vincent what is Mommy's name?
Vincent: Mommy

That's right Vincent.  I will always be mommy.    

"what are you expecting?"

both twisty and i are blessed with supportive parents. case in point is that my mom has worked her connections with pediatric neurologists and geneticists at her place of work to get us more information, and twisty's dad is letting us use frequent flyer miles to pay for our trip to seattle. not to mention the countless appointments twisty's mom has covered for us, and the millions of times she's driven to our house to help us. we are truly blessed with supportive and loving parents.

one thing that i'm sensing as a common theme...well it emerged again today. twisty is in the process of getting us an appointment with a homeopathic doctor in houston, which is cool. another set of eyes to evaluate gommy and more stuff to help. yay. i told my mom that and her first question was "well...what are you expecting out of this appointment?"

i say this as a theme because others have asked us the same thing once we got our appointment at the Dobyns clinic in seattle.

"what are you expecting?"
"i dont want you to be disappointed"
"just know that you're already doing everything you can"

some sort of variety on that theme.

truth be told, twisty and i arent expecting much. we're expecting to ask the same questions to a different group of folks and maybe we'll get different answers out of it that we can say "huh...that's interesting" and go on with our lives.

we're not expecting a miracle "cure" of some sorts. in some instances, we're expecting to create a network fo doctors to help support gommy (and tooties for that matter) as they get older.

but (and i can only speak on behalf of myself here--but i think twisty would agree)...i have this innate desire to feel like i'm doing everything that i humanly, physically, and emotionally can to support my son. and these folks are helping me get more information on how i can do that...so i'm not anxious, good lord no...i get excited about the possibility of talking to a homeopathic doctor. i loved hearing more about cranial sacral therapy from his chiropractor today. i'm THRILLED to go see dr. dobyns in september. i'm not sad that i have to do this...i'm blessed beyond belief that i GET to do this.

isnt that what parenting is? to devote your life to your kids? my spirit is made up of a holy trinity of twisty gommy and tooties...and these appointments mean i get to focus on a core part of who i am. i genuinely mean it when i say that if a doctor said "hey poppa, there might be something that could help gommy in your left pinky, but we'd need to cut it off in order to check it out", i wouldnt hesitate in the slightest bit and immediately go buy a new pair of gloves.

there are no expectations here...except expectations that twisty and i have on ourselves to do everything...EVERYTHING...in our power to support, nurture, and love our sons. these appointments are just an extension of those feelings, those emotions...that innate desire to do everything that we can.

God put me on this earth to be a husband to twisty and a father to tooties and gommy. My expectations are to meet His expectations by fulfilling my role.

Where we've been and where we're going...

howdy friends

sorry for the lack of updates. actually no i'm not sorry because hey this is our blog and we'll update it when we want to (no offense intended...we love the handful of you that actually read this blog). anyways, i'm procrastinating on grading right now so i thought i'd share a couple of updates:

Seattle!

Remember how I told you about Dr. Dobyns at Seattle Children's Hospital? Well so much for that appointment wait list being at 6-8 months...we are officially in for August 26. We've got hotels booked and are working on flights right now. So little gommy pants face is going to get to take his second plane ride for an appointment that's just about him.

We've heard great things about this guy, so I'm hoping that our expectations are met. I'm kind of picturing myself being a 13 year old girl who just met the jonas brothers. I might scream, i might faint, i'm definitely getting pictures and an autograph before getting down to business to pick this guy's brain on what he knows and what he can tell us.

Vacation!

Before that seattle trip, we're headed out with the entire twisty extended family for a week in florida, and let me tell you...after the past 6 months, we can certainly use it. A full week in a VRBO house with a pool and a hot tub overlooking a body of water. Pretty much perfect.

Gommy!

Gommy is making great progress. We're sitting up for extended periods of time, lifting our heads up high, working on rolling over consistently, and definitely playing with toys. The one fantastic thing is that over the past few weeks we've seen him get really into making eye contact...he'll look around for us and the second he sees mommy or daddy he just gets the biggest damn smile on his face. And my heart melts into a puddle on the floor.

Feelings!

We've replaced good days and bad days with good moments and moments that are good but could still be better. I am actually in the middle of one of those could be better moments. When I see my beautiful Gommy, all is well. I recognize that my goodness he's made so much progress over the past three months. When I go to PT or I read stuff on the internet about hemiparesis CP, i cant lie. it makes me sad. it's the difference between thinking of my sweet gommy as a person vs my son...if that makes sense. I want nothing but the best for him, and i think every parent wants their kids life to be nothing but easy and full of joy. What i have to keep telling myself is that 1) easy is in the eye of the beholder--and that everyone has challenges they need to overcome and 2) my son is full of joy and me being a whiny sad little bitch doesnt help him be full of joy.

So much of this journey is/has been about checking myself. Losing myself in service and love of my son. Losing this sense of ego, this sense of...the desire to control and give it all to God. Serve God by serving my son, if that makes sense. And part of serving Gommy means doing things with joy in my heart and love...without any reservation of what the future might hold simply because I have no control whatsoever about the future might hold.

I suppose that's what faith is about. And admittedly i struggle with faith sometimes. I mean i have it, but the intellectual in me wonders why I have it...then i look around at my loved ones...and well life makes sense again and I can say "HEY INTELLECTUAL. SHUT THE EFF UP"

Anyhoo. That's about as philosophic as i'm willing to wax right now. We have adjusted to the 4 appointment a week lifestyle...and are in the process of making even bigger picture family decisions (more on that later). Life is good right now, and only getting better.

Million Dollar Baby

Ever since we decided to start looking at things differently, I have been, well, happy.  At one point I never thought that I would feel like my usually happy carefree self.  It's amazing how God can truly alter your perspective of things.  One of the things I have been making a conscious effort of is to look at this as a rehabilitation (or maybe habilitation if he has never done it before?) instead of treatment.  The damage is done.  We now need to work on getting him to the best place he can be.  With that I have started googling things like baby designer eyeglasses instead of polymicrogyria prognosis.

One of the things that people keep telling us to do is to make sure we take time for ourselves.  With that in mind, I scheduled a very special massage for Thursday.  At 4pm, I will be driving out to the country to go to a very exclusive spa.  There is a lake and apparently horses and it is supposed to be very serene.  I will be in a dark room with aromatherapy and candles.  It will be amazing and relaxing.  Something every mom needs... Too bad its not for me. This massage is for Gommy.  That is right, I am paying for my 7-month old to have an $80/hour massage.  This is my new reality, and I can't help but laugh.  He has a physical therapist, an occupational therapist, a chiropractor, and now a massage therapist.  All of which he sees weekly or bi-weekly.  This doesn't even include any of his actual doctors of which he has a pediatrician, a neurologist, and soon a developmental pediatrician, eye doctor and ear doctor.  He is one spoiled little man.

We are also working on getting him an appointment with the world polymicrogyria expert, Dr. William Dobyn in Seattle.  Oh Gommy, the things we would do for you.

With all of these treatments we are trying to help him form new brain connections. Sometimes I worry that with all these swanky treatments with massage therapists, chiropractors and day trips to Seattle he is going to start to make new connections that lead him to believe he is incredibly wealthy.  I suppose that is just something I will have to deal with as it comes.  Don't worry baby, mommy would rob banks for you.  Come to think of it, I don't know that having PMG is all that different than growing up as Blue Ivy.  There are probably less diamond encrusted barbie dolls though.

One of the things that hasn't changed is that Poppa and I are no more of adults than when we started this.  We don't have a secret stock of toothbrushes and paper towels just waiting for when we need them.  We still run to Walgreens at least twice a week to get something that we ran out of or forgot at the store.  Refusing to grow up does have its perks though.  We decided that tomorrow we are celebrating Happy Saturday.  We have cupcakes and candles and presents for the boys.  We will be ordering pizza and eating it in Mommy and Daddy's bed while watching movies.  We are even going to let the boys stay up past bed time and fall asleep in our bed.  None of this is responsible and I will probably be annoyed on Sunday night when I fall asleep amongst pizza crumbs.  But that is one of the great things about not being a real adult.  I can do what I want and forget about consequences.  Sometimes it is best to live in the moment.  I love this life, and I love my men.  It's cool if you're jealous, I would be.