A letter from reader SwampWitch..
Jenna is in the photo where you see the hand holding her and Keely is of course the other.
It was basically a normal pregnancy up until the last 3 weeks that is when I no longer felt movement, but my father had just passed away so the doctors said it was most likely stress from that. Jenna was born 2 weeks late on October 1st 1995, she was 8lbs 14 oz a very weak cry and extremely floppy she had no muscle tone at all they thought at first it was from a lot of vitamin c then went to the way she was born with her arm behind her head thinking a possible pinched nerve. We were sent to Loma Linda Hospital to visit with a specialist this is when we first heard of the disease Spinal Muscular Atrophy, I asked the Dr. what does this mean for our daughter to which he replied "Don't plan a first birthday" we scheduled a muscle biopsy to confirm and on January 5th it was official Jenna had SMA. She was in and out of the hospital with pneumonia her last vist was on March 10, 1996 where we made the very difficult decision of turning off the machine which was at that time doing nothing for her she died in my arms.
November 97 I found out I was pregnant soon after I went in for an amnio and through that found out I would be having a baby girl with SMA. I am not against abortions but it was something I just couldn't bring myself to do and after many arguments with my husband it was decided to go through with the pregnancy. Keely was born March 3rd 98 she had the strongest lungs other were stating how sorry they felt for the parents who had to take her home because she was so loud but I just cried out of happiness because she was so loud. We began noticing signs of the disease around 9 months she wasnt able to sit up by herself and her muscle tone began to weaken, Her first hospital stay was after a year old and it was a week stay, soon after it was to Childrens hospital where she was from May until July she had gotten pneumonia we made the decision to get her home so a tracheotomy and a home ventilator, also a Micky which was how we fed her no more bottles or solid foods it was right to the tummy. Keely became my life I was her nurse, teacher, friend and mother and it was like that until October 23 2000 when she died at home.
Loosing the girls was and still is very difficult and there is not a day I don't think about them and still some days I will sit alone and cry because I miss them so much. But I will never regret having them, they both taught me so much and will always be greatful that they were in my life even for such a short time. I don't want anyone to feel sorry for me, in fact I feel sad for those who didn't get to know them. They were both an inspiration.
Connie
It was basically a normal pregnancy up until the last 3 weeks that is when I no longer felt movement, but my father had just passed away so the doctors said it was most likely stress from that. Jenna was born 2 weeks late on October 1st 1995, she was 8lbs 14 oz a very weak cry and extremely floppy she had no muscle tone at all they thought at first it was from a lot of vitamin c then went to the way she was born with her arm behind her head thinking a possible pinched nerve. We were sent to Loma Linda Hospital to visit with a specialist this is when we first heard of the disease Spinal Muscular Atrophy, I asked the Dr. what does this mean for our daughter to which he replied "Don't plan a first birthday" we scheduled a muscle biopsy to confirm and on January 5th it was official Jenna had SMA. She was in and out of the hospital with pneumonia her last vist was on March 10, 1996 where we made the very difficult decision of turning off the machine which was at that time doing nothing for her she died in my arms.
November 97 I found out I was pregnant soon after I went in for an amnio and through that found out I would be having a baby girl with SMA. I am not against abortions but it was something I just couldn't bring myself to do and after many arguments with my husband it was decided to go through with the pregnancy. Keely was born March 3rd 98 she had the strongest lungs other were stating how sorry they felt for the parents who had to take her home because she was so loud but I just cried out of happiness because she was so loud. We began noticing signs of the disease around 9 months she wasnt able to sit up by herself and her muscle tone began to weaken, Her first hospital stay was after a year old and it was a week stay, soon after it was to Childrens hospital where she was from May until July she had gotten pneumonia we made the decision to get her home so a tracheotomy and a home ventilator, also a Micky which was how we fed her no more bottles or solid foods it was right to the tummy. Keely became my life I was her nurse, teacher, friend and mother and it was like that until October 23 2000 when she died at home.
Loosing the girls was and still is very difficult and there is not a day I don't think about them and still some days I will sit alone and cry because I miss them so much. But I will never regret having them, they both taught me so much and will always be greatful that they were in my life even for such a short time. I don't want anyone to feel sorry for me, in fact I feel sad for those who didn't get to know them. They were both an inspiration.
Connie
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I ask Connie to tell us a bit about her precious girls and I thank her for that letter. It kind of puts life in perspective, doesn't it? And that is why I always call baby Sierra a miracle. Connie also has two sons, one biological and one adopted. She's one of the bravest, nicest people I've ever met on the net and an awesome mom. If you'd like more info about Spinal Muscular Atrophy please click HERE.
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Precious lovely Sierra, who is healthy.
12 comments:
Oh, that story is just hearbreaking. I'm so sorry that you had to deal with so much pain. As a mom, I can't imagine going thru that not only once, but twice.
You are very brave!
My heart goes out to you and all your angels.
My heart goes out to you Connie. Being a mother, I cannot imagine what it must have been like to lose your precious girls. I'm glad that you've been blessed with 3 healthy children but I know that your little girls will always be in your thoughts and heart and that you will miss them always. Thanks for sharing your story.
Susan
That made me teary. It is indeed a heartbreaking and beautiful story. You really sound like a brave woman with a huge heart.
What an awesome story of a mother with a lot of strength. I can easily look up to you for telling that story and becoming stronger because of it. Thanks.
Connie is even braver than you think. She took on the responsibility of a baby who was born from a bio mom who did drugs while she was pregnant with him. Dak is now happy and bright and adorable. I need a new pic of him!
I think Connie's strength is her love, where she says she would do it again, just to experience having those two precious children in her life, even if it was for such a short stay. I love stories like that because they are really grounding and remind us of the human spirit and that human beings can be wonderful and that love is strong. We need that reinforcement over and over again.
Connie, the dedication to the welfare of your children is a breath of fresh air. Truly a real example of Motherhood instinct and love. As a parent I can only say that I admire your strength and grit.
Connie, as you know, this did not come to me as a surprise at all, like DD, I knew all this, but it was wonderful to read about your 2 little girls again Jenna & Keely. I know the pictures you have of them are precious and each and every day you had with them, as short as it was, was never a day of regret at all and I have always admired your strength.
You have had many struggles with Dak too and again you are just an amazing person and mother.
With great relief, I was sooooooo overjoyed to hear Sierra did not carry this disease.
All your children are beautiful and like DD said, we need updated pic's of them (and on the CB?)
crystal
I am very sorry for your pain & I am happy that you do have children to love, as you seem like a person that wants to have that. I cannot imagine having that happen to my child. I admire you for even being able to write it down! I wouldnt' be able to see the keyboard! Bless you & your family. I hope you are all happy & healthy in your home. Sierra is your daughter too? I didn't get that from the posting. She's beautiful. XO
Connie..I could always feel you were a strong woman..And I can tell you have a big heart full of love.
You were lucky to have those girls for the time you did and they were lucky to have you.
Sierra is so lovely :)
Hugs
Eliza
Please take a look at what some people in the UK are doing for SMA
http://www.fatmenwalking.org
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