So, the first thing that everyone always wants to know is the what and the how, and I figure it is best to start at the beginning. Here is the story of all the little things that came together over the past decade that have changed my life and made me the happy, stressed, blissful, crazy, occasionally crazed and always (almost - but that will be saved for another post) proud mother of two special girls, only one that is Special Needs, and wife that is speaking with you now.
The February of 2005, right after my birthday, I got REALLY sick. My boyfriend's mother had to drive me to the doctor because I felt so badly that I couldn't even drive. As usual they had me "pee in the cup, just in case" and when the Medical Assistant came by and told me the doctor would be with me shortly instead of telling me that I wasn't pregnant I literally chased her down the hallway of the office and asked her why she didn't tell me that I wasn't pregnant (as she always had before) she looked freaked out and said "well I was going to have the doctor talk to you, but your test came back positive." To which I replied "Positive I'm not pregnant???" I won't spare you the details of laughter that came from her next (I am sure that you can imagine them.)
The pregnancy wasn't without incident, but my doctor played down my fears and I didn't really know better. At 30 weeks I had finally talked the doctor into another ultrasound, Emma (my daughter) was butt down in my 20 week ultrasound and I kept telling her that I just knew that Emma was still in the same position. After the ultrasound I was proven correct and we had ultrasounds for the next three weeks with no change to her positioning. We scheduled the c-section and literally almost all of our family was there when we prepped for surgery, Emma was going to be the first great grandchild, great niece, niece, grandchild, etc so we had people from Texas, Illinois and all over Indiana there to help us celebrate. My favorite Auntie was filming so that we would remember it forever, spoiler alert - that is the most loving, happy, amazing, scary, sad, awkward family video EVER.
Another nurse came up to me with Emma & told me that she was turning blue & bent in half so they were going to take her to the NICU. Truthfully I was in shock, I think I said "okay" and passed out - I don't remember the first 24 hours of my daughter's life, and that may be a good thing.
Emma was on a ventilator for 2 weeks and when she was taken off she didn't have any of the reflexes she should have like suck, swallow, gag, etc. We found out that both her knees and hips were bi-laterally dislocated. Emma was subjected to more tests than I can remember; X-Ray, EEG, EKG, MRI, CAT Scan, blood, urine, muscle biopsy, spinal tap to name a few. In order to take her home we had to agree to a feeding tube.
While she was going through that, Mr. Brown & I had to go through tests of our own. It seemed that every time we saw a new specialist they had a new horrible thing to tell us. "She won't live to leave the hospital, make it to elementary school, high school, etc." "She will never hug you, kiss you, speak, walk, etc." It was horrible, and it is still the stuff of my nightmares. The only thing that got my husband & me through it was the movie Dodgeball...no idea how or why, but it allowed us to smile & laugh.
During her short life she has endured endoscopies, botox injections, tubes, swallow studies,a tonsillectomy and adenoidectomy, numerous AFO's, leg braces, standers, rear facing walkers, theratogs, wheelchairs, speech therapists, occupational therapists, physical therapists, and developmental therapists, IEPs and Behavior Plans.
Emma is now almost 7 years old, and a first grader in a regular classroom with a resource aide. She wants to be a fashion designer when she grows up, and to live in a penthouse in New York. She had her feeding tube removed just shy of her 4th birthday. She talks, and anyone that doesn't know her usually understands about 90% of what she says - unless she is excited. She walks best with her walker, but can walk without her walker short distances, but drags her right foot pretty badly. She is very loving and incredibly affectionate. Emma enjoys her life and is really genuinely happy. She teaches me so much every day and touches the lives of so many people. To know her is to love her, even when she is being rotten.
Recently she was diagnosed with ADD (mainly in the area of Impulse Control), and to date this is the only diagnosis that we have for her. We have an upcoming MRI in October and I am hoping to see if we will have an answer to the many questions that are still looming. Its nice to be able to have someone to talk to about this and I hope that you will share your feelings, fears and questions with me too.
I am starting this blog to discuss the amazing things that Emma is able to experience in Indianapolis, and the people that make things "AMAZING" for her, so that you can take your kids (whatever type of special they may be) and experience them too!
