Emily was born December 3, 2002. We had a normal “healthy” pregnancy. Things changed quickly for us though. Here’s our story…
“We need to talk”, those were the words that our Pediatrician used to kick-start the journey through the world of “special-needs”. The day we were to be discharged after giving birth to Emily the pediatrician came in to deliver the news that our little girl had hydrocephalus, and was currently being prepared for transport to our local Children’s hospital. This was totally unexpected since we thought everything was just fine. Here we were though, kissing our baby through the “transport bassinet”. Too many thoughts flooded my mind, I got discharged shortly after. I don’t think my brain allowed me to understand what was happening. It was only in the elevator on the way to the car did an orderly ask cheerfully, “awwww, where’s the baby”. That was the moment I couldn't’t fight the tears back anymore.
On Dec 7 th (4 days since birth) Emily was to undergo her first, of now many, surgeries. She had to have a shunt put into her brain to alleviate the building fluid and to give her a chance at life. In the first four months of her life she underwent three more surgeries; those were due to complications from the first surgery. We had her home for a few months when she started having, what I thought to be muscle spasms. I kept pushing her Dr to investigate this further, which was when they found that she was having seizures. She ended up having prolonged seizures that would not respond promptly to medications. When she was about 2 years old she had a seizure that lasted so long, permanent damage had occurred. She now has a compromised left side, which has resulted in limited use of her left hand and leg. Through all that she has been through though, we have remained hopeful and optimistic.
We understand that she will always have challenges and obstacles, but when she achieves certain milestones the feeling is much sweeter. Emily is going to be four in December, she is currently involved in a wonderful special-day preschool program, she goes through physical therapy (where they are working on helping her walk) Emily is even in a gymnastics program.
If I could back to the day we heard, “we need to talk” and talk to me then, I would tell myself to stay optimistic, there is hope. You will have bad days, surround yourself with positive people. Take time to just be in the moment, and be sure to take things moment to moment, don’t overwhelm yourself trying to think 20 steps ahead, just be. The most important thing I would tell myself is to help Emily write her own story; help her become the best that “she” can be. Emily may never do things that other kids will for all I know, but as her mother, I am going to help be the best “Emily” that she can be.