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Why I am here

Marie - posted on 11/19/2008 ( 1 mom has responded )

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Hi all,

I am Marie. I am a 28 yo "retired" RN and mother of 4 little boys. My oldest is 7 1/2 yo. He was has a missing piece of his 22nd chromosome. He has been diagnosed with Velo-cardio-facial SYndrome (VCFS). He was born with a severe complete bilateral cleft lip and palate with a nasal deformity. He also had a congenital heart defect. He has a spinal defect, poor muscle tone, general developmental delay as well as a severe speech impediment. He is very small in stature and he has a platelet dysfunction. Separate of the VCFS, he has been diagnosed with a bleeding disorder called von Willebrand's Disease.

My almost 5 yo has severe allergies and eczema. He also has asthma. He has been assessed to have Asperger Syndrome. Just recently, he had what the doctors think are migraines (which doesn't totally shock me since Ihave chronic migraines).

My 2 yo has really severe allergies and eczema. He has very mild asthma. He has some GI issues that have yet to be diagnosed (if I could get anyone to think it was more than "toddler diarrhea" that might help).

My littlest is 2 months old. He has reflux and REALLY bad colic. He cries most of the day unless he is held (and sometimes even if he is held). HE has given me the blessing, however, of sleeping through the night most nights (though I think it is because he sleeps so little during the day). He is having a swallow evaluation on Dec. 4th due to the severe colic/ reflux and the fact that he chokes at almost every feeding.

I know you all know what it is like to have a child or children with special and/or medical needs. I feel so worn out! LOL! It seems like it never ends. I feel like nothing is ever simple. Between the 3 oldest boys we have had countless lab draws and tests, countless therapy and specialist visits and 16 surgeries. It astounds me sometimes when I think all we have "accomplished" in the last 8 years. I enjoy my boys and am thankful for them. I do have to remind myself of that most days as I am about to loose my mind and my husband is still at work at 6:30 PM.

I am excited to get to know you all better!

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Tina - posted on 11/19/2008

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Just know you aren't alone! I have 4 children ages 7, 6, 2, and 7 mo. My oldest is developmentally delayed, and has an eye condition that is called macular bullseye distrophy. My six year old has a learning disorder, and my 2 year old has a speech delay, that he won't overcome right away. It is overwhelming and sometimes hard to face. In my case I still don't know very much, and I'm trying to learn all I can about this unexpected form of parenting. Perspective is something I've had to really learn. I've had to look at so many things in a different light. The fact that my son wants to give me a kiss and tell me he loves me is special. When my daughter learns the sound for a letter when all her friends are reading fluently, is special. When my son says "yes" instead of "uh", is special. Trying to stay positive and having a good perspective is one of the best ways for me to deal with this situation. But, even though thats good, we all need to say how we feel when we're struggling too! It is very important to have someone to talk to. And, your not a bad mom if you have some bad days now and then, your just very normal. We have our hearts broken over and over, and then we have to pull ourselves together and keep going.

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