Friday, February 7, 2014

My Open Letter To Expectant Parents:

Greetings !

I spent so many days trying to think of a way to introduce myself to this blog. I wanted to be entertaining yet, informative and reassuring yet, not sugar coating anything. But then I realized no one out there in internet land really knows me or my story. So it doesn't really matter how I start off! Because if you are reading this blog you don't really care about me, you are here because at one point in your life, you heard those two little words that forever changed everything: Spina Bifida.

Allow me to start with an excerpt from my own blog that I would use to keep my long distance family up to date with my Baby #1 while I was pregnant with twins - aptly dubbed Thing 1 and Thing 2:

Dear Thing 1 and Thing 2,
I hope you know how much we love you out here and can't wait to hold you in our arms. YOur big brother gives you a kisses everyday - and even smeared his oatmeal all over Mommy's shirt yesterday giving you some of his breakfast! He is such a good sharer! As for September 12, well that is just another day on our  growing list of days that we will never forget. THat is the day we found out that Our little THing 1 is already a fighter - even on the inside. At a routine ultrasound  we heard the words you never want to hear as an expecting new parent - "something doesn't look right". Our minds raced with fear and the tears began to flow. "What does that mean?" "What could possibly not be right with our perfect little angels?"As the doctors and nurses did their best to act like this was an everyday occurrence, I held your daddy's hand and knew - something was drastically wrong. The next day we went for further tests and vacantly listened as the doctors explained the words "Spina Bifida" to us over and over again. As I listened to their calm and comforting explanation of what was taking place under my own skin I couldn't help but just sit their and silently freak out - QUIT TALKING AND SOMEONE HELP MY BABY!!! How could you be so close - and still we could do nothing to help?? Nothing but wait. It didnt seem fair.
My mind raced with fears and worst case scenarios. How could this happen? What did I do wrong? Were you in pain? What was your future going to be like?  Then suddenly amongst all my panic of doom and gloom I realized something I must never lose sight of again - You are my babies. Both of you. You are my little miracles - and it is not my job, but my absolute honor to love you both no matter what. I suddenly felt so ungrateful and selfish for all my negative thinking. Who was I to limit you before I even laid on eyes on you? Who was I to question what God has in store for us? From that moment on I promised you that I would stay positive while we sit and wait. I promised you  I would not let this diagnosis define you nor will I let it overshadow your arrival Thing 2. I realized Spina Bifida was not the end of the world and we would happily adjust to whatever 'new normal' our life would be like once you two arrived.
Well My Thing 1 and THing 2, no one ever said parenthood was going to be easy. A week ago, I thought the hardest thing I would have to deal with was having not 1 but 2 (ok, 3) colicky babies. It's funny how things can change in the blink of an eye. Just know that you two have a whole team out here pulling for you guys and praying for your safe arrival. You have a whole, big, loud, obnoxious family ready to love you and spoil you and secretly fill you up on candy when mommy is not looking. You two, along with your big brudder Isaac, are our precious, little perfect snowflakes and your Mommy and Daddy love you very much  - today - tomorrow  - and everyday after that.
So rest up in there Little ones and enjoy your final months of peace and quiet. I can promise you wont get much of that out here. :) Thing 2, keep an eye on your Buddy in there for us. Thing 1, get ready to be grounded for all the worry you put your Mommy and Daddy thru the past few days.
As for you Isaac, You just continue being the amazing little creature you are.

Odds are if you are reading this, you may be pregnant with a little one diagnosed with SB and you slightly freaking out right now. This entry is for you!  Also like myself, you probably googled Spina bifida  - against everyone's advice to stay off of the computer - and happened upon this blog. Perhaps someone referred you here to see all the beautiful babies and smiling faces of Spina Bifida. And maybe, just perhaps, you are still on the fence of whether or not a child with special needs is something you are capable of handling. I am here to reassure you that every child and person with SB has had parents who stand exactly where you are today. We all freaked out, we all cried, we all doubted our capabilities - yet for every person living with SPina Bifida today - we all got over OUR fears and became a stronger parent for it. You can do this too!

The greatest advice I ever received when I was pregnant with my twins (now renamed Jake and Lucy)- and Lord knows I got A LOT of advice! - was that one day I would wake up and SB wouldn't be such a big deal. Back then, I remember thinking the CHOP nurse who told me that was crazy! And then one day it happened: I ran out of diapers. Keep in mind I now had 3 babies under 3 years old and we go through A LOT of diapers!!  I thought "Oh Crap! We are out of diapers, I have to run to the store!" I never thought Oh Crap! Thing 1 has SB and now we are out of diapers!  or  Oh Crap! Thing 1 has SB, how can I go to the store? It was just the simple realization that life was going on anyway - regardless of Jake's SB or not. I was still going to run out diapers, I was still going to have to make dinner, I was still going to sing silly songs to my kids and play dress up. Most importantly I realized I was still a mom - and those babies needed me to be the best mother I could be.

I always said if I could have met my Jakers when I was pregnant with him I would have never cried a single second over his diagnosis. So he has some issues - his crazy-temper tantrum-screaming all- the- time-hides-food-in-her-toy-box twin sister is on track to have plenty too :) To know him is to love him. His smile, His crystal blue eyes, His belly laugh, his ridiculous Sean Cassidy-esque hair - he is completely perfect in every way. Sure his feet are a bit funky and he constantly has a stinky diaper, but I wouldn't  change a thing about this lovable creature…well, other than his ability to fight off a sleep like it is his job!

So Mama or Daddy if you are reading this and wondering how in the world life is going to go on - or how can this happen to you - I am here to tell you YOU CAN DO THIS.
So get up, strap on your big girl (or big boy) pants and get ready! Because this baby  - YOUR BABY - isn't going to take any mercy on you! He or she will be here in no time and your heart will be stolen the second you meet! And very, very shortly after you will be wondering what the heck you were so worried about…Just don't forget to buy plenty of diapers! <3


kdoughertymedici said...

Wonderfully written and so true!!

The World of Vineet said...

Beautifully written. Yes, I agree, its nothing when you look into their loving eyes and their zeal for life!! :)

Jana Krūmiņa said...

Thank you for your story! That was very helpfull!

rina sh ab hamid said...

hi, im rina from Malaysia. reaching ur blog by random google search. your story really inspired me because i also have a child (boy) with SB. now 1 years old. i also feel the same way as you when doctor diagnosed my baby with SB. i google and do research about SB. now, i realize that SB is not difficult to handle as long as we are happy to do it.

Arjun Kapoor said...

Thanks for the useful information. Right on. It's more informative and easy to understand. Please help me suggest The Best School in Moolakadai

thara said...

Wonderfully written well done! My partner and I sat down together to read this. I have twin babies (18mo). One of them was diagnosed prenatally with open defect SB. If I could zoom back to my diagnosis day I would tell myself basically not to be so nervous about the future. Two years ago I kept oscillating between nervousness and excitement. We were told that Laurel would probably need a wheelchair for life amongst other bad things (some of which I am pleased to say were not true). I hated my diagnosing doctor. I hope that all newly diagnosed families read this post.