Where do I start? Well I guess on January 26 1996, the minute they lay my beautiful new baby on my stomach. I was so in aww of her and happy to see my beautiful baby girl. I also was concerned that something might be wrong with my baby but nothing was said to me by the nurses. My little girl looked to have downs to me. I put that in the back of my head and went on with the joy of being a mommy to such a wonderful little girl. She was so good and so beautiful. 6 months had gone by and a stranger came up to me at a game and asked how long I had known that my baby had Downs. My life was shaken at that very moment and was forever changed. But wait there is a twist in this story that is so amazing.
So now start the months and years of testing and waiting. One test after another after another just to be told each time the results were negative. One would think this would be great news but it was always followed by but there is something going on. They ruled out downs but not mosaics. They ran so many tests that my baby girl at one year old would just put out her arm for them to draw blood without thinking about it.
I had two other children and had been working with children for 12 years at this point and knew that my baby was not physically and mentally developing like she should be. When she was born she was 6lbs and at a year old only 14lbs. She would still lay in my arms like a baby and her eye contact was not like it should be. I told my Dr. many time before she was a year old but he was never concerned. I contacted early on when she was one year old and had her tested. She showed delays and they began to work with her. As time passed they decided that it was possible that she may not speak. She came up with her own way to communicate with us through her own signs early on then got her a speaking board.
At 18 months old I convinced the Dr. that her eyes needed to be checked and sure enough she was legally blind in her left eye and close to it in her right eye. Glasses went on and she began to thrive. By 3 years old she was able to speak one to two word sentences. Still nowhere near where she should be but the happiest little girl ever.
At this time I am getting very discouraged with the Drs. not finding any other reason as they are still looking. Why is she not growing and why the large delays. When she turns 2.5 we finally go to a neurologist and do a few tests. The waiting begins and finally some answers. She has a mild case of cerebral Palsy. I excepted that answer and at least had something to go on now.
Now we are entering preschool. Much smaller then all the other children, only weighing 16lbs but very confident and happy. She started to show signs of other delays so we had her tested more. This time I was told by the specialist that she would be lucky if she gets past the 6th grade. Yes his exact words oh and let me add that he also said the one thing she has going for her is her confidence. WELL let me tell you I took those words and threw them right out. Wrote him a nice letter stating how sorry I was that her felt that way about my daughter and that I had a promise from God and I was standing on that.
She spent two years in Kindergarten and has had a lot of struggles academically. When she was 9 years old we had a few more things thrown her way. First there was the diagnosis of Dyslexia and then half way through the year she started some strange behaviors. She started to make some odd noises and strange movements. Just wasn’t sure what was going on. Then one night I received a call from both my sister and my mom telling me to turn on PBS and watch a show call “I have Tourette but Tourette doesn’t have me” I was watching my little girl on that show. As tears streamed down my face seeing just how bad it could get fear set in again… why is this happening to her?
As a parent the hardest part was having your outgoing happy little girl start to go inside herself and become depressed. Kids were not used to her twitches and she started to lose friends. I started her in therapy and on medication that lessoned the ticks but they weren’t gone. We played around with foods and went all natural and that also helped. Nothing really took away the ticks but they were not as noticeable. It was always hard to know what would set off the next tick and how to handle it.
She struggles with having friends because at a young age she was shown how hard kids can be on you and finds it hard to trust. For me as a parent seeing a child struggle is very hard but even harder is to listen to your child night after night, year after year cry over hurt feelings and beg to just not have to go to school.. I would tell her all the time to lean on God because He has Great plans for her. What those plans are, we do not know for sure but He uses her in so many ways now.His light shines though her and she is so in love with God.
Her struggles have only made her stronger and that much more of a great person. She is now going to graduate in 2015 with a diploma. Don’t get me wrong she has had a lot of struggles but she did it. Life is hard but God is Good All the Time.
The picture above is of My Beautiful daughter and myself going to her Junior Prom