Sunday, June 03, 2007

Never Again!

I was told the day that my child was born that she had some "odd" features. I was told within 24 hours that she might die. I was told when my child was 6 weeks old that she had Rubinstein Taybi Syndrome and she would never walk or talk....she would be severely retarded. I was told when my child was 6 weeks old that she had a life threatening liver disease and without surgery she would not make it past her 2nd birthday. I was later that day told that my child "probably" did not have Rubinstein Taybi syndrome....they just did not know....only TIME would tell. I vividly remember withdrawing to the very darkest place that I could find in my mind. It was the only place that I could live with all of this information. The beautiful child that I had carried for 9 months....the child I dreamed of....I planned her future...I planned OUR future together. At the time all I could think of were two things. First I thought that we would not have a future at all with this beautiful daughter of ours. Second I thought about the future that would be so different for our family. The days became darker and darker while the thoughts in my head became more and more bleak and undefined. I withdrew from my child. I was so afraid to love her. I despised the way that others looked at her. I worried about every single thing there was to worry about. How was her growth? Was she eating? What did her bloodwork look like? Was her oxygen sufficient? Did she seem more yellow? The gloom of the unpredictable future was always hanging over us. Did she or did she not have "The syndrome"? Would she be severely mentally retarded? We wondered if we were capable of raising a child with such severe special needs. We briefly discussed the possibility that we could not handle this. I prayed and prayed that if her life would not be happy that God take her from us....and not give her a 2nd chance at life.

I was told when my child was 4 months old that she had a heart defect. I was told when my child was 4 months old that she would need a liver transplant....SOON! I was told when my child was 4 months old that if the heart defect could not be repaired she would not be eligible for a transplant. I was told when my child was 4 months old that the doctor "did not think" she had Rubinstein Taybi Syndrome....."she looked too bright". I prayed and prayed and prayed that the perfect liver would come and she would live a happy life.

I have lived through 7 surgeried in the first 7 months of my child's life. I never imagined my life with a sick child.....or a child with special needs. Here I am today, almost 4 years later. I am so happy that my child di receive a second chance at life. The first year of Emma's life was very gloomy. I never quite felt like I attached to her. I always feared getting too close to her....or loving her too much. These are not emotions that I am proud of....they are just the truth. I have struggled through many emotions over the last 4 years. I still struggle with having a child with special needs and fearing what her future will look like. However, I try to wake up every day and appreciate the fact that I have one more day with this amazing child. I look at her face and I cannot imagine my life without her. I watch her tell me no in her own way (not with words) and I laugh inside at her strength.

Last night we met our neighbors in the yard. Their daughter (who is my age) was visiting. Emma LOVES her. They were playing, and their daughter said to me, "You need to teach her some words". Anger has enveloped me since I heard that phrase come out of her mouth. Not anger at her for being so ignorant, but anger at the fact that people think something is "wrong" with Emma...that I need to "teach" her something. Emma is exactly who she is supposed to be....and she will speak exactly when she is supposed to. (OH, and the fact that we have had her in speech therapy since she was 5 months old).

Today I have decided that it's not going to affect me. Nothing that she or anyone else has to say about Emma will ever again make me go to "that dark place". Today is for living, and I will never again withdraw or be ashamed of my child. She cannot speak, but she has more knowledge about the world in many ways then most of us could ever have. Emma is absolutely perfect!!! Just ask her:).

4 comments:

Ben & Bennie said...

AWESOME! I truly know how you feel and I really admire the ability to bite your tongue and let it go. For a stranger to our situation it truly is just ignorance. They just don't know.

2DISCO said...

Is it appropriate to use profanity on this blog? I am still suprised by the ignorance of people who think they have the magic answer. Angie, everyday is a blessing with or wothout words. You are doing a great job of making your lives...."NORMAL" I admire Emma for not wanting to be known for only her beauty, but struggles and endurance as well. Hang in there. I love you.....

Becca said...

That was the most amazing post. I am so proud of you for having written it. Bless you, and God bless Em.

Terri H-E said...

Well said. I can relate as my daughter does, indeed, have Rubinstein-Taybi Syndrome. Which we did not descover untl she was over 2 years old. Have you a definitive diagnosis for Emma yet? How is you resolve to live your own normal coming along?