So To Speak

I haven't written in a while because my life has been generally uneventful, yet absolutely chaotic at the same time, but today, I need to pour out my heart.  Overwhelmed does not begin to cover it.

Today was Nutt's one year pre-evaluation for speech therapy.  He has been working with an amazing woman named Angela since we realized last October that he was behind on his verbal skills.  No mama, no dada...he wasn't even saying 'no' (which was the first word spoken by my oldest, and is still his favorite). Our rep from Early Intervention helped us find Angela and she has really helped to pluck little tiny words out of the brain and mouth of our little guy.  I thought he was coming along great.

After asking me every question on a three page (front and back) questionnaire, Angela determined that Zayden is running about the same as an 18-month-old would be with his speech.  He turned two in August.  I was shocked.  The reasoning is that other than me, no one has a clue what this little jabber-jaw is saying.  I hear "drawing" while Angela hears "fowin."  I hear "brush" while Angela hears "buh" (which is apparently the same thing she hears when he says "bye," "book," and "ball").

Even with all of the progress I thought we had made, Nutt is still almost a year behind other kids his age.  I see my BFF's son (who is about 3 months younger than Nutt), and it is glaringly obvious that he is more verbally advanced than our little guy.  I watch him repeat new words on command, while Nutt just stares at us when we try.  I watch him tell his family "I love you" while Nutt just demands that we change the "buh" channel ("buh" apparently means TV, too).  I've even come to realize that Nutt is further behind with his speech than Evel was at his age, which led to speech therapy later and a hellish stutter that he still has to consciously control whenever he is nervous or upset.

But Angela is confident that we will get him talking (in a language that all can understand) in no time.  She said that delays are common in kids that have been diagnosed with facial palsy, and that there are techniques we can use once he gets a little older to get him talking.  There is also a plateau between 24-30 months, which is where he is right now.  She gave me a list of things to try with him this week, and went on her way to help other kids like Nutt. 

This gave me time to think.  Couple that with PMS, and it's a very slippery slope right into me becoming a basket case about my child's inability to pick up on the cuss words that I use on a daily basis (which Evel also had no problem doing).  Are my genes defective and that's why both of my kids didn't talk until well after two years old?  Is he just being stubborn or is it something physical that is preventing him from talking?  There were tons of questions that swirled around in my head.

But the one that kept nagging at me, the one that I push away every time I think about it, kept coming back to me.  What if he wouldn't have been diagnosed with Moebius Syndrome when he was born?  What if he would have been "perfect?"

The day we left the NICU.  I don't even recognize this baby anymore.

Even typing that rips a flood of tears out of my eyes.  Of course, I think that my son is perfect and no, I would never trade him for a kid that closes both of his eyes when he cries.  I just wonder if we would be going through speech therapy.  I can't imagine that we would have ever visited a pediatric neurologist or learned how to get fluorescein out of clothing.  We wouldn't have spent hours doing research about how to protect a baby's eyes from wind and I know for damn sure I would have chosen a vehicle based on factors other than Pennsylvania's window tint law.

We also wouldn't have to worry about our son being picked on by kids that don't understand his diagnosis, and that don't see what an awesome, funny, adorable little cheeseball he really is once you get to know him.  And am I supposed to send a note on picture day asking that the school photographer turn him the opposite direction from how they usually photograph the kids so we can get his "good side," or would that just single him out even more?  Will the school allow him to carry his eye drops with him or we he have to go to the nurse's office every time his eye gets dried out?  What if he still can't talk "right" by the time he starts school AND half of his face doesn't move?  What if the school doesn't help if he gets bullied?  How will Big Daddy afford my bail money if I have to pay the principal a visit?

Big Daddy and his Xerox copy

All of this stuff lurks in my mind at all times.  My biggest fear is that these bullies that don't even exist yet will steal the little half a smile that we are lucky enough to have.  I worry that he'll find it easier to just stop laughing in the hopes that people might not notice that he doesn't smile the same way as everyone else.  Nutt is such a fun-loving kid, and to think that someone might snuff out that happy little spirit makes my stomach do flips.  He deserves his carefree childhood.  Every kid does.

Sometimes I feel guilty worrying so much about Nutt because of all of the kids out there that have serious health complications.  I fee like my worries pale in comparison to that of a mother who has to constantly monitor her child to make sure their trach tube doesn't come out while he or she is sleeping or a dad that has to make sure his child gets her epilepsy meds so she doesn't have a seizure.  My worries seem like the end of the world to me sometimes, but what about the people that are begging our creator to keep their child alive for just one more day?  They deserve to give me a kick in the ass and tell me that I should appreciate everything that is right with my son, and to stop dwelling on everything that is wrong.  And they are right.

18-month-old picture of our little future Nittany Lion

So yes, I wonder how would life be different if everything was perfect.  I honestly don't know.  But I do know that this is the life I have been given, and I also know that I am thankful for it.  I am thankful for my kids and my husband and every minute that I get to spend worrying about them.  I am thankful for the people that I have met through Nutt's Moebius Syndrome diagnosis, and I am thankful to be able to call these people my friends.  I am thankful for the strength that I didn't know I had until a little baby peered at me with an eye that didn't close.  I am also thankful that just two short years after the day that we all realized something wasn't right, we now have a bubbly, rambunctious toddler that couldn't be more perfect.

So I will try to take deep breaths, let everything come naturally and try to remember that if it wasn't for the rain, we would never be able to follow the rainbows that lead us to our pots of gold.

The doctor made a huge deal about this because you can see Nutt smiling...on his paralyzed side, which would have never been able to move because of the missing nerve.  Irony at its best.

The first smile. October 16, 2010.  Funny the things people take for granted.

The first Moebius Syndrome Awareness Day (1/14/11)

Cheesers!

Head to the Moebius Syndrome conference!

Merry Christmas from a little Nutt!

Two years old already.  Where did the time go?