Born with Beckers Type Muscular Dystrophy(MD), I have had to struggle all my life. It is very rare for females to get MD. Through countless blood tests and a biopsy, this is how it was as I was growing up. On top of that my father was an alcoholic and would mentally abuse my mother. Through it all I found strength in my faith in God. This book is written in letters form to my brother or sister who was miscarried when I was younger. I believe all babies go back to heaven if they are miscarried, still-born or terminated.
Letter 1 19th October 2005
To my dear brother or sister,
You donít know me but I am your big sister. I know about you and have a yearning to meet you. As a matter of fact, I canít wait to get to where you are. Ever since I found out about you, I have wondered about you. You see, our mother suffered a miscarriage when I was little and after my younger brother was born. But I didnít know until a few years ago when our mother told me. I donít even know if you are male or female. But it really doesnít matter.
All I is, you went to be with God the moment of miscarriage. You have grown up in Heaven. I have often wondered what my life would have been like if you had lived, if you were a part of my life. Would we be close? I have often thought that maybe you are a sister I never had. But alas, you were not meant to live. Only in Heaven. I never got to know you. I wonder if you have thought of me. I wonder if maybe there is a window in Heaven that you could peer down to see my life and how things were. Even if there isnít a way for you to see, God knows. I am sure you are beautiful whether you are a brother or sister.
I want to tell you about my life and how God has had His hand upon me all my life. But I wonít tell you all at once. I donít know if youíll be able to read these letters that I will write but the angels know, God knows. And the words I write will be from my heart. I long to know you and I want you to know my heart. I canít wait to see you and hold you in my arms. I know you are beautiful growing up in Heaven. I will see you some day.
Bye for now and love always,
Your big sister,
Letter 2, 23rd October 2005
My dear brother or sister,
How are you? I am quite well now after a bout of the flu. You are so lucky in a way to have escaped all childhood diseases and even adult ones. When I was young, I had the measles as most kids do. Then one day my glands were swollen and my parents thought I had the mumps. Turns out it was only swollen glands.
But that is not really as bad as what I was first diagnosed as having. When I started school I couldnít walk properly so my older brother would wheel me to school in a stroller. Back then they had a school doctor going around the schools where we lived. He seen how I walked up steps, one hand on one knee and thought that something was wrong. So my parents took me to a childrenís doctor. After several tests, it was thought I had a condition called Muscular Dystrophy(MD), which is rare in females, and it was the type that affected males and gave them a short life-span. So from then on, I was living one day at a time. Waiting for the inevitable. It shocked my parents beyond belief. ANd it was only in me. My brothers donít have it nor any of their kids. Only me. I had photos taken of my legs because they were big. More blood was taken, making me feel like a pin cushion. At age 6 I had a muscle biopsy on one of my legs. After I was diagnosed, I was more or less left to live for death. Well, thatís more or less what I was doing- living to die.
I spent most of my childhood in and out of hospital, mostly for check ups, being teased at school until I hated it. I couldnít run or play sport like the other kids and kids can be cruel but that is only because they do not understand.
When males get this type of MD which is called Duchennes, many donít live to see their 18th birthday, some are lucky to live until they are 20. So it kind of made us wonder what would happen to me once I reached 20. By the time I was 28-29, I went to Sydney to see a specialist in the field. He took one look at me and said that I didnít have Duchennes MD. After another visit here in Newcastle I had a dna test done and it was determined that I had another type of MD called Beckerís. This is very similar to Duchennes but offers a longer life-span. This was after my father died. Both mum and I were shocked and bewildered and also angry, mostly at the doctors for getting it wrong in the first place. All those years waiting for death to come, only it wasnít coming for a long time yet.
During those years I had put on weight. Well, I figured, why not enjoy life while I can. Now, I can no longer walk, and get around in a wheelchair. See, MD is a muscle weakening condition so slowly I am getting weaker. I donít have a lot of strength in my arms and my back is curved due to the way I sit.
For years I felt angry and basically ripped off by life. It didnít effect my Christian beliefs though. I will tell you about that in another letter. I have so much I want to say and wish you could read this. Somewhere deep down, a love for you is growing in me. You are a part of me. Maybe you can read this. I would like to think that you can. Oh how I wish youíd lived. But another part of me is glad you didnít. You were spared the heartaches and pain of this life. Will tell you more soon.
Letter 3 25th October 2005
Itís me again, your long lost sister. I feel I need to tell you exactly how I feel about this condition of mine.
When I was a kid, I used to fall over a lot, especially in the playground at school. I would almost always come home with skinned knees. I couldnít run, walk up stairs properly nor be involved with sports. But for me, the worst part was the relentless teasing. Kids can be so cruel. I hated school so much. I hated the condition. Whenever I fell, I would always cry out, ďWhy me?Ē It wasnít until I started attending a special school for physically disabled children that I finally felt accepted. High school was bad. Once I fell over in the canteen and could not get up. I felt so embarrassed in front of everyone. Not even my so-called boyfriend wouldnít help me up. I was humiliated even more when the vice principal had to help me up.
I was further embarrassed when we had to have a needle to prevent German Measles. In the canteen assembly area, there was a small stage and steps leading onto it. We had to go across the stage to get to the nurses office. Of course there was another way but I didnít know about it until the Principal told me. As I was getting up the steps I could hear the sniggers of the girls behind me. Well, the principal apologized only when it was too late. I never felt more embarrassed in my life. Thank God, I had to leave the school after I had my tendons in my legs stretched. We moved not long after that. That was in 1979. I was only 14. The new high school just didnít work out at all. Too many stairs. I remember coming home after my first day in tears. I just couldnít handle it.
Then someone told mum about a special school for physically disabled kids. What a relief. I was using a walking stick back then. I spend the rest of my school days there. I was happy at last. I was even voted school captain.
I may have accepted my disability on the outside, but I havenít really. Not deep down. Deep down in the recesses of my heart, I hate it. I hate being disabled. For so many of my Christian years, I have begged God for healing. Only to have Him say no. I yearn for heaven and death. Knowing I will finally be free of this horrible thing that I wouldnít wish on my worst enemy.
In my next letter, Iíll tell you about the rest of the family, esp. our dad.
"All I is, you went to be with God the moment of miscarriage. You have grown up in Heaven. I have often wondered what my life would have been like if you had lived, if you were a part of my life. Would we be close? I have often thought that maybe you are a sister I never had. But alas, you were not meant to live. Only in Heaven. I never got to know you. I wonder if you have thought of me. I wonder if maybe there is a window in Heaven that you could peer down to see my life and how things were."