Luke's Tuberous Sclerosis Page
Paige's Story |
 In August of 1997 my two year old daughter was diagnosed with Tuberous Sclerosis and Infantile Autism. My Pediatrician had us come in the office several times during the month of August to observe her to make sure he hadn't made the wrong diagnosis of Autism. He then sent us to a neurologist who had made the final diagnosis of her Autism. When I was in his office he found the ash leaf spot on her abdomen and said with all the other factors involved that she had Tuberous Sclerosis too. At the time I thought what he said just meant that she was Autistic, so I didn't ask any questions about the Tuberous Sclerosis. In September of 1997 I went to the Son-Rise Option Institute to learn how to accept and how to work with her Autism. That week was one of the most spectacular weeks of my life. I learned to look at her as a special person, and to realize she is a special child from God, instead of a child who just wasn't normal. But can I ask, who ever defined normal anyway? It was the hardest time in my life, to learn how to accept my child's Autism. In October, the Early Intervention Program and BOCES (Board of Cooperative Educational Services) sent people in the home to work with my daughter. Through me and the people that come in my home to work with her, she has started making wonderful progress. In early February of 1998 our Service Coordinator came to meet and talk with us, just to see how things were going. She was looking through her notebook for some papers and I had seen the Doctor's report when she was flipping through the pages. I asked her if I could look at the report. I started reading the report and it said she was diagnosed with Infantile Autism with Tuberous Sclerosis. I thought to myself- there is that word again. What does this mean? By the end of the night I finally knew what that word meant. I just couldn't believe it. I thought, how can this be happening to us. I had a lot of mixed feelings that night. Knowing I was in a situation I just couldn't do anything about. I knew my life had changed drastically since August and I found a part of myself I never knew existed and knew I didn't want to lose, so I knew I had to accept this for what it was. Every time I look at my daughter, I know she is an angel, a precious gift from God and it is she that has changed me and has shown me what the world looks like through God's eyes and to also know He is not punishing us, He is blessing us. I have put my fate and trust in His hands and have asked Him to do what is best for us and to give me the strength to be able to handle his decision. All I know is that I don't want to be selfish and keep her here if she has to suffer. I already feel my daughter has accomplished more in her two years of living on this earth than most people do in their entire lives. My daughter is such an amazing person and she is going through so much right now. She has started having seizures, she has had 4 seizures in 13 days so they had to put her on medication. She has regressed quite a bit, meaning everything we were teaching her and things she was doing well with she isn't doing anymore. I guess that's all a part of it. I have so many questions about what is going to happen, but I know I will never get the answers to these questions so we take everyday one day at a time. I don't know what the future holds for us, but I do know that her spirit and her soul lives through me and our memories can never be erased. There are so many feelings I have about my daughter, I don't even think they can be explained on paper. They are beyond words. I may have a lot or a little time left with my daughter, but the time I do have left I cherish every minute we spend together. Our love is stronger than I have ever dreamed it could be and I thank the Lord every day for giving me this opportunity. He has sent me an Angel who can move Heaven and Earth and who has moved me and has made me the person I am today. I'm a person who is filled with love and strength and I know my Angel, PAIGE ELIZABETH MILLER has made that possible. I wrote a poem about my daughter that I would love to share and hope it helps you like it has me when I was writing it. MY ANGELSorry you have to go through all this drama I know soon you will go to a place that's safe The suffering will end and you will feel great. Baby, when you see the light You can stop this horrible fight All of this pain will end And your soul will begin to mend Don't worry about me, I'll be fine But keep in mind you will always be mine When the sun shines through the clouds I know you're saying you love me out loud Your spirit will live on through me Which I'm already sure you can see Even though my heart is breaking I know my pain you are taking I will miss you dearly when you are gone But I know you will help me along You will always remain in my heart Even when we have to part Your love has forever changed me So your spirit it can be set free You have given me strength to go on So fly Angel to your place beyond In heaven with God is where you belong And someday I will be along Baby we will be together again But I cannot tell you when In the meantime take my love Carry it with you when you go above Our love is like a rose Even though the flower dies, the memories will always remain close Baby when the time has come for you to go Take my heart, my love and everything you know Fly Angel above and beyond Because we will always have our bond I will love and miss you forever But remember, the ties we cannot sever So Angel, fly way up high And every time I think about you and miss you, I will know All I have to do is look up to the sky. KERRY J. MILLER This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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A SPECIAL NEEDS MOM BLOG JOYFUL & JUGGLING
WATCH LUKE'S FOOTBALL TOUCHDOWN ON INSIDE EDITION
LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
