Franklin, Wisconsin
In May of 1988, as I awaited the arrival of my new baby, my second child, I was 24 years old. My due date was July 10th, but needless to say, she came early. My daughter Samantha was a fighter inside me and still is to this day. She was born 7 weeks early, 6lbs and 11oz 's, was diagnosed with mds when she was about 6 hours old.
I, as well as my husband, were devastated. How did this happen? How would can we make her happy? And then the feeling of guilt, thinking I did something wrong to her. It was terrible - I felt as though I let her down. But with strength and faith, it came to us. She taught us so much and still does. At 2 weeks old Samantha was having some problems with constipation and I took her to the doctor. She gave her some medication and said, 'oh, if it still persists, come back." I said, with a smile, okay, having one child already knowing that kids get sick now and then, but my concern was she was only 2-weeks old. Well, she went back to the doctor 3 times after that and then to the urgent care where the doctor told me to take her immediately to Children's Hospital - something is very wrong. As we rushed to the hospital with fear that just took over me, we stayed in the emergency room for 7 hours as doctors were running in our room trying to care for our daughter and asking us, her parents, to leave the room. We sat outside the room praying, praying for our daughter and her very new life. The doctor came out of the room and told us that she had almost died and if we want her baptized we should call our priest to come to the hospital at that time, Samantha was diagnosed with Hersbrungs disease - waste had poisoned her system and she needed immediate surgery at 3-1/2 weeks old, had surgery and received a colostomy - what a shock that was. But her life was saved, learning to care for a colostomy and a bag was unbelievable, not mention that my son who was 3 years old at the time thought that the colostomy was the coolest thing he had seen and wanted one just like it.
At the time Samantha was in the hospital for her colostomy, we were told she also had a heart defect. I thought I was going to die. Her heart was beating 3 times faster than it should have. They gave us medication to give her and also told us that she could have a massive heart attack at any time. I had never been so scared in my entire life. What happened to this beautiful little baby? And why did she have to suffer like this? At the age of 5-1/2 months she had open heart surgery which went very well. She was in the hospital for 6 days, and came home on Thanksgiving morning. Now that's something to be thankful for, as it's a very special holiday for our family.
At the age of 1 year she had her colostomy taken care of and YEAH, no longer a colostomy or dealing with the bag. We were so happy and so was she. It was terrible trying to keep her from playing with that bag when changing her clothes, like any other child her age would do. The surgery was successful but long and lots of incisions.
This little girl was such a trooper throughout the first year of her life going through 3 major surgeries, getting sick with ear infections, etc... She still was a fighter, crawling around at the age of 5 months and so determined to be mobile you could see it in her eyes. After that first year and then working through the second and of course needing to take a breather from the first year, Sam was healing and showing us that nothing was going to slow her down and nothing did. She kept pushing herself and before you know she was walking, running and getting herself into trouble all the time.
She has made tremendous accomplishments throughout her life which non we take for granted, blowing out a candle, potty training (we had a huge party for her when we accomplished that...whewww), putting shoes on the right feet, making herself something to eat, reading, math, science, my list goes on and on.
Through the years we have learned so much about life, how to appreciate it, respect it, and treasure it. I have a son who is 14 and is the best big brother, caring and sensitive to his sister's needs, as well as the people around him. Don't think that they don't fight every now and again because they do. He watches her and is just as happy and amazed when she is successful in one of her tasks. He (we) laugh at her when she tries to be funny, which is all the time, or shakes his head at her when she is so very out-spoken. But they have a very special bond, we all do. My daughter is now 11 years old, in 5th grade. She has the social skills of a child her own age, the academic skill though are a little lower. She is mainstreamed in school, has some special ed classes as well as regular education classes. There are still some speech problems that we deal with. She receives speech therapy in school as well as extra speech at the Children's' hospital in our city. She knows everyone at her school, and is extremely social to a point that it gets her in trouble (she talks way to much, her dad says she gets that from me). She loves Ricky Martin, Britney Spears and God I can't forget the Back Street Boys. Her goals are to get her own car (yikes) purple, her favorite color, to have a great job and to live in her own home someday.
She tries very hard to be like everybody else and I tell her don't try so hard to be like other people, be yourself. Because she is truly a wonderful person, a blessing for our family, she has taught us what unconditional love really is.
When this child was born I couldn't even imagine getting to this day, life was always a struggle. Trust me, it gets better, as you learn and understand and respect and love them it makes everything you've gone through, good and bad, worth while.
At the time Samantha was in the hospital for her colostomy, we were told she also had a heart defect. I thought I was going to die. Her heart was beating 3 times faster than it should have. They gave us medication to give her and also told us that she could have a massive heart attack at any time. I had never been so scared in my entire life. What happened to this beautiful little baby? And why did she have to suffer like this? At the age of 5-1/2 months she had open heart surgery which went very well. She was in the hospital for 6 days, and came home on Thanksgiving morning. Now that's something to be thankful for, as it's a very special holiday for our family.
At the age of 1 year she had her colostomy taken care of and YEAH, no longer a colostomy or dealing with the bag. We were so happy and so was she. It was terrible trying to keep her from playing with that bag when changing her clothes, like any other child her age would do. The surgery was successful but long and lots of incisions.
This little girl was such a trooper throughout the first year of her life going through 3 major surgeries, getting sick with ear infections, etc... She still was a fighter, crawling around at the age of 5 months and so determined to be mobile you could see it in her eyes. After that first year and then working through the second and of course needing to take a breather from the first year, Sam was healing and showing us that nothing was going to slow her down and nothing did. She kept pushing herself and before you know she was walking, running and getting herself into trouble all the time.
She has made tremendous accomplishments throughout her life which non we take for granted, blowing out a candle, potty training (we had a huge party for her when we accomplished that...whewww), putting shoes on the right feet, making herself something to eat, reading, math, science, my list goes on and on.
Through the years we have learned so much about life, how to appreciate it, respect it, and treasure it. I have a son who is 14 and is the best big brother, caring and sensitive to his sister's needs, as well as the people around him. Don't think that they don't fight every now and again because they do. He watches her and is just as happy and amazed when she is successful in one of her tasks. He (we) laugh at her when she tries to be funny, which is all the time, or shakes his head at her when she is so very out-spoken. But they have a very special bond, we all do. My daughter is now 11 years old, in 5th grade. She has the social skills of a child her own age, the academic skill though are a little lower. She is mainstreamed in school, has some special ed classes as well as regular education classes. There are still some speech problems that we deal with. She receives speech therapy in school as well as extra speech at the Children's' hospital in our city. She knows everyone at her school, and is extremely social to a point that it gets her in trouble (she talks way to much, her dad says she gets that from me). She loves Ricky Martin, Britney Spears and God I can't forget the Back Street Boys. Her goals are to get her own car (yikes) purple, her favorite color, to have a great job and to live in her own home someday.
She tries very hard to be like everybody else and I tell her don't try so hard to be like other people, be yourself. Because she is truly a wonderful person, a blessing for our family, she has taught us what unconditional love really is.
When this child was born I couldn't even imagine getting to this day, life was always a struggle. Trust me, it gets better, as you learn and understand and respect and love them it makes everything you've gone through, good and bad, worth while.
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