I hadn't planned to share this news with anyone outside my family. It's not that I was ashamed of it, although I do feel somewhat responsible, I just never wanted anyone to look at my little angel differently. I've never been more scared in my life as I was the day I found out Madisyn had MCAD Deficiency. I felt like I had just been run over by a bus and I was laying there still feeling the tires run over me, crushing my diaphram so I couldn't breathe. The correct terminology is Medium Chain Acy CoA Dehydrogenase Deficiency. It's a genetic condition in which her body doesn't know how to convert Medium Chain Fats into Energy. It's a manageable condition but its going to make her life difficult. I can't help but feel pain everytime she does after she takes her medicine or throws up. It makes me feel like my perfect baby shouldn't have to feel sick like she does. It angers me that I have to keep her away from other kids to avoid her exposure to illness, because a fever guarantees me a trip to the ER. The doctor has given me an Emergecy Letter to carry around in case she does go into a "Metaboilc Crisis" so the doctors will know how to help her (it's so rare they don't know what to do without being told). It effects 1 in about 15000 people, usually 5 or 6 born per year. I am grateful to have a knowledgable pediatrition who has made himself familiar with her condition so he can help with her treatment.
I look at her beutiful face and wonder what hardships she will endure in her life not necessarily as a result of MCAD. I want to sheid her from the world and make her life beautiful. As I look around and count all the blessing the Lord has given me I can't be bitter. There are children born with far worse challenges than my child; but it's still my child and she will suffer. I promised myself that she would never see my cry over this, she is no different that any other child, just has a special diet. She and Kate bring joy to my life unlike anything I have ever known, I love them more and more everyday. Just when I think I can't possibly love them more, I do. My life is beautiful, even with it's challenges.
5 comments:
I'm sorry to hear that one of your babies has a health problem. Thank goodness it's manageable.
I'm sorry Amber! Thank heavens for your amazing doctor!
A wonderful pediatrician makes all the difference! I am thankful that Kate and Maddi's is willing to research and keep educated about her situation.
About your promise to never have her see you cry about it? Don't decide that today because, Amber, there may be a day that she needs to know that it is hard on her mom to watch her child "suffer" with being different in a way that most children aren't. I thought I would never use the word AUTISM around Hoss but then I decided that Hoss needs to understand WHY he is different and social skills are hard.
Wanting your child to be protected from hard things is such a knee-jerk reaction! If only we could protect them from ALL the bad and reap only the good....... *sigh* but alas-- light needs dark, positive needs negative, and good needs evil-- so that we may know the difference thereof.
Love you!!!!
Amber, Maddie is a very special little girl! You look in her eyes and you can tell that she has so much to give. I can tell you know that she is here to teach us all something very special. Maddie and Katie have their Grandma Karen right around their little fingers. I am so grateful for both of them, and THANK Heavenly Father everyday for them. Even with Maddie's problem I know that she will be able to grow up and be health and strong like her sister, and with the doctors, and specialist that she has she will be able to grow up and be a VERY happy little girl.
Always remember that the is a reason for all things. Angels are always here to help us, all we have to do is ask. And if nothing else GRANDMA Karen is there and will help out day and night.
I love you and these two beautiful girls.
Love Mom
Sorry to hear the sad news. Your amazing and will be able to learn and cope with the difficulties.Let me know if there is ever anything i can do to help
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