I don't know where to begin; its been so long I feel like I need to start from the beginning.... But, I wont do that.
Today Natalie was seen by Dr. Notariono, who is a neurosurgeon, about the ridges in her skull. She confirmed Dr Penas original statement of surgery to remove the ridges. We are waiting to be contacted by a Dr Ghalli to find out how soon this surgery would need to be done. Dr Notariono also discovered a place in the back of her skull where her spine meets her head.... Something about a vertebrae that was mishapped and will need to be watched.
As a mother I know I should have been paying very close attention because what she was saying about her vertebrae was very important, but all I could think was....
This is just another day.....
My innocent and beautiful child will have to deal with these things her whole life.
With her delays and being slow to develop mentally, she will always be behind..
I would like to say to all of my friends and family that keep telling me they are sure she will be fine, to please stop. Your hope that she will one day be normal is only heartbreaking. I know better. I have always known better. I want people to except that she is, and always will be different, as Mike and I have, so that they can grow to love her for who she IS and not the dream child/grandchild/niece/cousin... whatever... they hoped she would be.
Some days I feel energized like she can do anything and I'm motivated to help her and I just want to do the therapy. Then other days.... its really hard. I get sad so easily. I love her so much and I feel like her life is going to be so hard & its not fair to her. I wish I could take it all away.
When I change her diaper I find myself wondering how long I am going to have to do it. She is 15 months old and isn't crawling. Shes a long way from walking, and is just now starting to push herself in a sitting position. It could very well be 5 years until she is even beginning to train.
My worst fear is her being that kid in school everyone laughs at because they are slow. & that kills me.
Whenever I was growing up and my parents were together, when everything was good, we lived across the street from a girl who had down syndrome. Sometimes I think of her and how much fun we had. Even though she got on my nerves sometimes because she couldn't understand simple things I would try to explain... She seemed blissfully unaware that she was different and we got along just fine.
I think out of the 7-8 years I lived in that house we were friends the whole time and she was constantly at my house on the trampoline and playing games with my sister and I. She was a year older than I was and 3 years older than my sister. I would have RATHER played with some of my other friends who lived across town and were in my grade and could add 2+2, but when I think back I cant even think of one time the 3 of us were together that I didn't have a blast!
I know that being friends with her gave me the little bit of patience I have. I also feel that growing up with someone who was mentally challenged as a close friend gave me a kindness that not alot of people have.
I pray when Natalie grows up she has friends that look back when they are 22 and are happy they knew her.
I hope she changes someones life, & makes them a kinder, more patient person than they might have been.
I know she has changed my life. I wouldn't trade places with any mother in the entire world; even on my most down days I am thrilled to have Natalie as my daughter.