This week’s Mommy Moment is by my awesome Twitter Friend Tara of Mommy Head Adventures. She has a very touching and tough story to tell about her two wonderful and beautiful children. She honestly went through things that I wouldn’t wish on any one, but it made her such a strong woman and mother. Having to see your child suffer the way her first did is truly gut-wrenching and I commend her for staying so strong through it all and never losing hope. Her story is definitely a unique & inspiring one and I’m so happy to know her.
First off, I just want to say thanks to Vi for asking me to share my story with you today. It isn’t an easy story to share. The emotions are still so raw, and it seems there is no easy, short way to share it. But I will give it my best shot.
Let me take you on a journey back to August 26th of 2009. Imagine you are with me in a small, white room. There is a computer, a cabinet and a table. We find ourselves here because the days prior to this day have been so strange. Almost constant sleeping, barely nursing, losing skills and this weird jerking accompanied by screams. I told them all things weren’t normal, but it took being in this room for someone to believe me.
Bear, my daughter, was 5 ½ months old at the time. They glued the 26 probes to her head and we waited. It was during this 1 hr long EEG that we would receive our answer.
Infantile Spasms – A very rare form of epilepsy
This answer would force me to grow up in ways I would never imagine.
The next months were a journey that I hope no other parent would ever have to endure. We spent 6 weeks on a medicine that we had to administer through a shot to her, everyday. There is nothing like having to hold your baby down and stick a needle in their fat, swollen legs. There is also nothing like having to endure two rounds of this medicine, where each shot would cost $2000.
We made it through. Every day was a gift with Bear. Her seizures would stop after the second round of the shot medicine. The only problem would become the second medicine that they had put her on. It ate away her stomach lining so she could eat no solid foods. She became severely malnourished and dehydrated, but, through the course of her hospital stays, we discovered Baby 2, Lion, was on the way.
Thankfully, when we took her off that second seizure medicine, her stomach was healed and she was able to eat solid food. And, the seizures never returned!
Life was good. We did developmental and physical therapy for her for awhile. Then we changed to speech and physical therapy, just in time for her brother to be born.
Lion was born with Down syndrome.
It came as a shock, but I couldn’t have been more prepared. Bear’s sickness really had prepared us for the battle we would face with Lion. Therapy and doctor’s visits were something we could do.
Lion is a healthy baby boy. Yes, he may look a little different, but he is so much fun! He has brought a joy that no one could really understand.
Lightening struck our family twice. At the time, it was hard to swallow. Now, I guess since I don’t know any different, I don’t really want any different. I love my kiddos, developmental delays and all! Besides, life wouldn’t be nearly as fun without them.
Be sure to check out Tara’s blog Mommy Head Adventures and give her some Twitter & Facebook love too.
I want to give a big THANK YOU to Tara for sharing her story!