Evan's Updates-Jan. 10,
I give God the glory for Evanís extremely good health. I live with suspense and fear at every cold Evan gets because I wonder if this cold will be the one that lands us in the hospital with a small little boy fighting for his breath and ultimately life. Again I praise God that Evan has never been hospitalized for respiratory problems.
remember a great request my mom used to beg God for when my sisters and I were
little. She used to pray that God would grant her enough life so that we would
be old enough to be independent of her. Praise God He granted her this prayer
and she has seen us girls grown.
I too now pray this to God. I beg God to let me raise Evan. I want this hard job. I want this great responsibility. I want this. I want the pleasure of raising my son. It is my desire to be with Evan.
do not like all the work that sma hands out. I hate the emotional stress.
I hate not having a healthy child. I hate the fear I live with. I hate
the instability. I hate the unknown, the known, the tomorrows and the yesterdays
But my love for Evan outweighs all my hate and melts me into a mother that battles with the real possibility of not having my son on this earth. That thought brings me into a greater, deeper, rooted love that I now know exists and only those that have battled this same force only can know.
Everyday I beg God for a cure to see Evan sit, walk, run and be free. But everyday that I wake up and go to sleep with sma, I believe in this miracle less and less.
I must be able to learn something from this sma experience. I have so far learned that I am a better mother than I thought I would be. I learned you could love so much that it hurts. I learned that Garth is an incredible man, husband and the best daddy. I learned who my friends are. I learned that my mom and dad are terrific parents in leaving their beloved life in Florida to come to the lonely desert of Arizona to be with Evan and give me the needed emotional support. I will forever remember their great love.
of all I learned that Evan is full of life and courage. I learned that he is the
smile of my face. He is the weight of my shoulders.
He is the force of my strength. He is the spine in my back.
you Evan for letting me be your mommy.
-March 25, 2002
Evan received a g-tube in October 2001, he had difficulty eating and gaining weight. That was the first step at facing this demonic disease eye to eye.
On December 2001 he received his bi-pap, pulse oximeter and cough machine. We now had a hospital room rather than a nursery. We again had to swallow hard and get used to this disappointment.
Evan has had colds and each cold takes a beating out of his body. As time passes, we see that SMA is fierce and out to destroy.
Evan always has a smile and is very happy. He loves to live and loves to be loved.
Garth and I are in love with Evan. We have never had other children, so we do not know if we love him so much because of the threat of not having him some day, but we know that our love for him is great and our fear of losing him is unbearable.
For Garth and I, our faith is being tested, but THANK GOD He will not let us fall. We trust God will do what is best.
Our love for each other and patience is being tried, but gratefully we have always been very compatible and therefore we cling to each other during these hard times.
I still grieve daily for the things Evan can not do. I pray constantly that God will send a miracle.
I look forward to the day when I will laugh again from my heart and this evil SMA will be cast out of our lives. I look forward to freedom, but honestly I fear I will not find it until we reach heaven.
My life is good, I love and I am loved. Evan is blessed too. He loves and his love is returned to him passionately. I feel I can speak for Garth, he loves and is loved and we are a happy family. We are content.