Monday, October 10, 2011

Spina Bifida Awareness: Meet Avery!

Today we have the pleasure of hearing from Andrea, mom to Avery!

My name is Andrea and I have a daughter that will be 6 in December who is living with Spina Bifida.  

I can remember the day all to well when I found out she had Spina Bifida. I was 16 weeks along, I cried at the Doctor’s office, I just couldn’t help it. There were just so many emotions, I was frightened, scared, helpless and didn’t even really know what Spina Bifida was. When I got home I read everything I could find about it. It scared me even more. I have grown to love this baby inside me and I was determined to do everything I could to get her the help she needed. Her father left, decided he didn’t want to help raise a child with a disability. The doctors tried to talk me into having an abortion (which blew my mind). No, I kept thinking this is MY little girl and I am keeping her and going to love her and raise her. Life was hard. I felt alone. I remember one night I prayed all night and asked God to lay his hands on her and help guide us through this. He answered my prayers. He gave me the strength be to her mommy. He gave her a great personality, courage and a loving soul.

Things turned around the day I had her. Her name is Avery. She weighed in at about 5 lbs. and only 18 in. long. She had surgery to close her back at 24 hours old(her SB level is L5-S1) and had her first shunt placed in at 1 month. She has since had 2 replacements.

She is amazing!

 She hit all her milestones when she was supposed to everything was going great. All of a sudden things started going backwards in development. She pretty much stopped doing anything. She doesn’t seem to have the “normal” signs of a shunt malfunction.. So it was hard to catch the first time..but since then I have master her signals. So once that was replaced she went back to crawling, walking and sitting up. Now she requires braces on her legs for walking. She loves picking out the different patterns they offer. (That’s my princess!)

School is a BLAST for her. Nothing slows her down. She recently started having some bladder issues (having reflux into her kidneys and lots of bladder infections) and I had to start cathing her. I had prepared myself for it but I guess when the time finally came it was hard on me. Avery on the other hand..well it doesn’t bother her. She takes everything in stride. She handles things better than I do when it comes to her. I guess because I am Mom, I am the protector, helper and a shoulder for HER to cry on.

 Avery just started riding horses. She loves it! She is always in line to try something.. You wont see her making excuses. She doesn’t feel sorry for herself and she never asks why was I born this way. She never feels ashamed. Kids sometimes can be cruel and I think I worry about her more at school, but she can handle herself.. She informed me that when someone asks why she’s in a diaper she tells them it’s none
of their business. So I guess she has it under control.

Six years ago I made the BEST decision of my life, to raise my daughter Avery. She fills me with love everyday. She is so kindhearted, God really Blessed her and me too. She is my HERO, My LIFE,  she has my whole heart and that will never change.

What a darling girl Avery is! Thanks so much Andrea sharing your beautiful girl with us!