My Story

The first month of having a new baby was hard.  No sleep, always worried about falling asleep because something might happen to her......the list goes on and on.  Ava grew quickly and the first three months of her life was normal and great, but when she turned four months, I noticed something different about my baby.  She wasn't lifting her legs at all to play with them or kick around.  When I laid her on her stomach she would not lift her head up and Ava wasn't even trying to roll over.  At first I just thought that at her own time she would do all these things, but after a few more weeks we decided to take her to the doctor to get checked out.

Right away the PA noticed that something wasn't right and she scheduled Ava to have a MRI, X-ray, and other test. Everything looked fine on those test, but they thought something else wasn't right so they scheduled Ava for a muscle biopsy.  I was scared out of my mind, the thought of her going into surgery.  I couldn't tell you how many tears I've cried over her, but we wanted to know the truth.  Surgery went great, Ava was sent home within a day, and we where told to wait for at least two months to get the test results back.  

Finally after three months of waiting, we were called to come in to the Neurologist office for the results.  The doctor sat us down with an intern and told us that Ava had Spinal Muscular Atrophy (type 1) and there was no cure.  He then went on to say that she was going to be in a lot of pain, she wouldn't be able to crawl, walk, sit up on her own and would almost be completely paralyzed.  She would have respiratory problems due to weak chest wall muscles and would loose her swallow and would not be able to eat.  He told us to just take her home, make her comfortable, and let her die. Then he walked out of the room.  I remember it just like it was yesterday, I started screaming.  I was mad, sad, confused. What did I do wrong?  Did I not eat right while I was pregnant?  I took all my vitamins.........its my fault.

The intern couldn't understand why the doctor was so cold hearted (and I will always be grateful for him doing this for our family) and he gave me some information about SMA and support groups.  He said don't give up on her and that Ava could live a long and fulfilling life.  After telling my parents that day, I went home and cried for the whole night.  The next day I called Ava's pediatrician and he referred us to Children's Hospital in Birmingham.  All of the staff up there has been wonderful, they gave us hope for Ava, and started the ball rolling for our long road ahead for our daughter.

Well,  I'll guess I'll tell you why I'm writing this.  Ava today has turned two, a year that we where told she would never make.  Ava is funny, she is silly, she smiles all the time and never seems to complain.  Even after being rushed to the hospital twice when she stopped breathing.  Even after being cut on three times for muscle biopsy, tracheotomy, and g-tube placement.  Even after having to be hooked to a ventilator for life.  She pretty much is a normal two year old to me.  Holidays, Birthdays, and other celebrations are so important to us.  But I've learned to enjoyed each and every single moment with her.  At first I always thought about the day that we would loose her, but now I think about the moment in hand.  We've learned to add life to her years, and not years to her life and we've learned to give her as much as a normal life as possible.  I'm so glad that God blessed me with such a wonderful child, and I wouldn' want it any other way.

First of all, I would like to thank God for blessing me with Ava.  Then my family (Mom, Dad, Malcolm, Deven, Amanda, Xavier, Eljiah, Daija), they have been through this tough road with us the whole way.  I wouldn't know where I would be without them.  Just the little things they do, like bringing over dinner when I just couldn't cook, picking up Ava's medical supplies for me, giving me a breather and taking care of Ava while I just ran to Walmart real quick.  They have done so much for us.  For my Grandmother, Aunts, Uncles, and Cousins.  All of your prayers, long talks, and laughs are greatly appreciated.  To my Knollwood church family for all your prayers, cards, and gifts for Ava......we thank you so much.  To all my friends, thanks for everything!  To my new fellow SMA families:  Jennifer, Cortney, Chris, Dawn, MJ, Janice, and the entire families and staff from Families of SMA, thank you.  You truly understand what it means to take care of our babies, thank you for the support.  All the staff at Women's and Children's hospital you have done so much to get Ava where she is today.......thank you!  Also to my coworkers at Providence thank you!  If I left anyone out, please forgive me, but thank you!  To Ava's sisters, you love her so much and I'm grateful for that.  To our home health nurses:  Marla, Clara, Erin, Felicia, Tammy, Joanna (we miss you so much).  Thank you for taking such good care of our baby!

To Cornelius:  our life has been crazy, this has put a strain on our marriage and with your new kidney its been even harder.  You are a big help to me and I know that we get on each others nerves sometimes, but I love you with all my heart.  Your love for Ava is amazing and she is definitely a daddy's little girl.   Thank you for everything you do!

I have to give a special thanks and love to Ava's god mother and my good friend Page Price.  You have been with us since day one.  You where my boss, bridesmaid, friend, a shoulder to cry on, and now Ava's God mommy.  I love you and Ava does too!  Thanks for everything that you and your family has done! Also to Ava's God father Blake, thank you for all you do for our family.....we love you!

It hasn't been easy raising a special needs child.  I'm always tired and I sometimes miss just being able to run out when I want to, but I remember that God has a special plan for us and that he felt like I was the right person to take care of Ava.  She is loved by so many people, but there are a few that have given up on her, even some who don't love her or take care of her like they should (and you know who you are).  But I've learned to move on from the negative people in our life.  It's your loss to not know such a beautiful child.  Ava teaches us all to really stop and enjoy life and she has really taught me the ultimate power of prayer.

Now for the party!!  We are going to really celebrate because my baby is two!!  I love you Ava, mommy is so happy that you are here with us.  I'm looking forward to many more birthday celebrations with you and we are going to have so much fun today in New Orleans. You are truly an Angel from Heaven and I'm so proud that you are my daughter!