Welcome to Holland

Hi All.  This is my first blog.  

Let me introduce myself. My name is Shirley. I'm a mom of two wonderful boys ages 1 and 8.  My eldest was born with Spina Bifida (open spine) and mild hydrocephalus (excess fluid in the brain).  Needless to say, the "untypical" is my "norm" and "norm" is "untypical" to me.  I live in my own Bizarro World.  And I'm ok with it.  

As I watch my one year old making milestones, I'm in awe, like a new mom. My first experience as a mom was out of the ordinary. My eldest son is amazing. He's grown up to be a funny, charismatic young boy.  He has an infectious laugh and one of the best smiles, ever.  He inspires me to be a better person, mom, wife, friend, sister.  

It was a life changing moment when the doctor told us that our first born would have special needs. Basically, we had two choices: leave it up to God or walk away. Obviously, we chose the first.  It takes a lot of "cojones" to make a decision where you have a million questions and the only answers you receive are "We have to wait and see".  That response is "unacceptable" to a Type "A" like myself. See, I'm a planner. A researcher. I weigh out the options and make the decisions based on my research and prepping. So when life throws you this vat full of lemons, what the heck are you suppose to do with it? There are only so many recipes one can use lemons with. 

Here we are having our first son and while everyone is decorating nurseries and picking out names, I'm on the internet trying to research SB, the various levels and trying not to look at pictures of what an "open spine" looks like. I will admit, I did not enjoy the first 6 months of my pregnancy. I was too busy trying to familiarize myself with what this condition is and what challenges our son would face at every stage of his life. In my research I came across a poem called Welcome To Holland by Emily Perl Kingsley.  This poem perfectly describes the experience of raising a child with special needs.  This gave me some hope. I also had to find my faith and find my strength to move forward.  The planner that I am, put together a binder with  various sections on pretty much everything about SB and what potential services our son would need. Then one day, I stopped doing research and decided to enjoy the rest of my pregnancy. After all, the choice was made, and there was nothing else I could do but sit back and wait and see. There's a saying "Let go. Let God" and I did just that. I let go. I prayed and let God lead the way.  After all, I believe he chose us to be Niko's parents.  He wouldn't give us more than what we could handle.  

Eight years later we have been very blessed.  Our son has only had one major surgery. After he was born via c-section, his spine was closed and shunt was placed in his head the next day.  I made sure he received Early Intervention services from the time he was 6 months old. He didn't learn to walk until he was almost 2 years old. The year that he was born, I had 6 other girlfriends who where also pregnant and all had boys.  How painful was it to go to a birthday party almost every month and see all the "firsts" all these kids meeting their "milestones".  The most painful for me was seeing my little boy look at the other kids running around and he wanting to do the same.  He was a late walker and a late talker.  While his gross and fine motor skills are still weak,  he is able to walk without any crutches.  He's never had a shunt revision and now I can't get him to quiet down. 

I've learned that kids do not come with manuals (that's a given) but it takes a strong family unit to raise a child with special needs.  We are very lucky that in the broad spectrum our son is high functioning.  We have our challenging days and not a day doesn't go by that i'm not on high alert for any shunt malfunctions.  Kudos to those families that have children with more severe challenges. I don't know how you do it. Perhaps, like us, you let go, let God.