The month of October is Spina Bifida awareness month. I am dedicating my blog this month to raise awareness. I am sharing my space with amazing people who want to tell a small part of their journey with my readers. This month I hope to bring not only awareness, but HOPE and the ability we have found to find JOY in hard things.
First I would like to welcome my friend Gretchen Soares.
"My first child, Taylor, died at birth. Because of the complications with her birth I was followed very early on by high risk specialists with my pregnancy with Nathaniel. Even though all of the early markers for birth defects came back fine, I had a level 3 ultrasound (the highest level available at that time) done at 18 weeks gestation.
It was during this ultrasound that we saw Nathaniel's lesion and he was diagnosed with Spina Bifida. An amniocentesis was run the next day to confirm the diagnosis.
I was devastated when I found out about Nathaniel’s condition. Not because of the condition itself, but because I felt cursed that I couldn’t have a “normal” pregnancy like so many other women. At that time, I felt like just about anyone could get pregnant and have a healthy child, but not me. I have since learned that I am in no way alone on that journey, but at the time I felt so alone. The next thing that hit me was that ALL of the doctors seemed to think nothing of telling me to terminate my pregnancy. After having no choice in the death of my daughter there was NO WAY that I could choose to end this pregnancy. No one seemed to understand that feeling in me. Even many of my own family didn’t want me to have such a “hard road” with my child. From the beginning I knew that I would ALWAYS fight for this child and their life. Before I even knew that Nathaniel was Nathaniel I knew that he was worth whatever life threw at us! The harder sell was convincing the doctors that we were having this baby! I was also frustrated with all of the “dooms day” predictions given to me by doctors. NO ONE knows what life is going to throw at ANY ONE, I couldn’t understand the need to focus on the negative. Any of us could be a in accident tomorrow that changes the rest of our life, that isn’t a reason to give up on life today.
I am not going to lie… sometimes our journey with Spina Bifida seems HARD, but everyone has something hard their life at some point. My son is an AMAZING individual with strength and charisma beyond words. He teaches me things daily, especially in my faith and perseverance! Things have gotten even more interesting in the last 5 years, as I have walked this journey as a single mom, but still, I would do it over again if given the choice! I have really come to learn that all things in life are a matter of perspective. I try to keep our family perspective on the positive things in our life, and teach my children that mountains are in everyone’s life. We all have to learn to climb some mountain! Spina Bifida is the mountain we climb daily!
Nathaniel is now twelve,and a go getter. He is blessed with strong use of his legs. He loves to play all sports (his favorite answer when asked “what is your favorite sport?” is “anything with a ball!”), ride his hand cycle, surf and do anything “techy” (play on the computer, play video games, steal my ipod, lock me out of my phone… you know, all those toys technology gives us!) Nathaniel does struggle with many mental impairments from his Spina Bifida, but they are just part of that mountain we climb! The interesting thing about Spina Bifida is there is NO predicting it, and no two cases are ever identical! I dare you to embrace Spina Bifida and see where it will take you as a family!
One of the things I heard A LOT when Nathaniel was diagnosed was that he would never walk. I know that he is blessed with his lesion being where it is and still being able to walk pretty well, but it still makes me laugh every time I have to chase him down! Growing up on the Central Coast of California, one of the things I did from an early age was surf. I never thought Nathaniel would get to experience surfing like I did. Well I was WRONG! Nathaniel has been surfing for the last three years, and just this summer he stood up on the surf board ALL BY HIMSELF! You bet this momma was on her knees BAWLING tears of joy and thanksgiving when that happened! I am amazed what my son can do he is one strong kid!
Every life is a journey and has some adventure to it. Spina Bifida may not be the journey or the adventure you were planning to take, but that doesn’t make your child any less wonderful!