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.