Tuesday, June 05, 2007

A Rock as a Home

I'm contemplating just finding a beautiful rock and making my home right under it. I'd like to just be away from the world...enjoying my little family and listening to the rain. I would like to watch my child playing in the sunshine and exploring her surroundings. Oh wait.....my life is kind of like that! I love the days that I can sit and home and watch Emma. The mischief in her eyes, the way that she figures things out, the knowledge that her brain has continually growing. I wish that we could just lock the door to the outside world and pretend that everything was wonderful and perfect and gloriously glorious. Truthfully most days really are like that.

I know that I have a tendancy to write about the negative. For my own therapeutic means I have to write out the things that bother me. It is my way of "letting go". There are very few people that I discuss my woes with, but somehow letting all of the cyber-space world know about my life seems to be OK. I don't like talking to people about it because....let's face it....everyone has problems, right? Who wants to hear about mine? At least if you're reading about my problems you can stop reading...thinking Man this woman is psycho:). if I told you all of this in person you would be forced to listen to my incessant whining with a glazed over look on your face and casually nod your head and say "uh-huh" from time to time.

Today is a rough day....again. I usually only have about one/month. I think that is pretty darn good considering after Emma's initial diagnosis every day was black. Even on medication it was difficult for me to get out of bed every morning, put a smile on my face, and make it a great day. Every single day!!! I think that I am doing pretty good.

However, comments that innocent people (not SMART people) make can just crush me flat in an instant. It could be something that I have thought about every day since Emma's birth, but to hear it come out of someone else's mouth makes it real.....and sometimes I prefer living in fantasy. Real to me is scary and unknown. Today someone asked me if I thought that Emma would have to be placed in the severly special needs room once she is in school. Now, it is 2 years until Emma will be in school. Who knows what will happen in those 2 years.....who knows if she will even be with us in 2 years (yes, a bleak thought....but also real). However, I honestly had never had that thought! I had never thought that it might be a possibility that they would tell me that she HAD to go to the severely special needs classroom. I played it cool for the lady that asked, and as soon as I got in my car I felt all of the air escaping out of my chest. It felt like a huge boulder was being place on top of me....crushing crushing. I saw my life flash before my eyes....including my future life with my child. Hot tears sprang from my eyes as sobs wracked my body. NO, this is not my life!!! My life is living under my beautiful rock watching my child enjoy the wonders of the world. To hell with anyone who thinks anything else!!!

I honestly just try to live in the today. Here and now is where I need to be. I need to be present for my child and all that she is. I treasure every breath that she takes and value the fact that she is here for one more day.

Please let me know if you hear of any real estate with a simple yet beautiful rock that is big enought to occupy a family of 3. We would prefer one that has a sign that says, "We love to live our simple naive life. Please allow us to live in the today".

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:).