24 May 2014

Ichthyosis Awareness Month: Roxi and Michael's story. "You hear a lot of people say a lot of mean and ugly things about your baby and how you must be a bad mother."

Roxi found me through last year's Ichthyosis Awareness Month Blog Project. I'm so glad she did!

She writes about her son Michael, who has Congenital Ichthyosis form Erythroderma (the same as what I was diagnosed with at birth). He's 29 years old.

Like many stories in the IAM Blog Project, Roxi and Michael's is one of struggle, hope and being blessed by Ichthyosis. It breaks my heart to read that people said mean things about Michael as a baby. I hope that by sharing these stories here, it makes people think about the impacts of their words.

Meet Roxi and Michael.

"My name Is Roxi and my son’s name is Michael and he was born with what we believe to be Congenital Ichthyosis Erythroderma. When the doctor and hospital Chaplain came to talk to me about my son’s birth I knew something was wrong. They explained he didn’t look normal and was ill. I asked if he had all 10 toes and fingers? They said yes and I said that is all that mattered. Later the nurse brought Michael to me and I was so happy, and I cried because I could tell he was in pain and there was nothing I could do. Michael was given an I.V. under his skin instead of the vein and his hand turned gangrene within hours. Michael was born in November 1984 and his left hand was amputated that Thanksgiving.

I listened to the doctor tell me for a month he had a 50/50 chance at life. I prayed continuously for God to please let him live and I promised I would take care of him. We brought him home for Christmas.

You hear a lot of people say a lot of mean and ugly things about your baby and how you must be a bad mother. I shed many tears that first year but I grew tough for my son's sake. I realized a lot of things that first year and everyone after. Michael needed a happy positive outlook on his life. When people would stare or bump into things for not paying attention to where they were going we would laugh and make fun of them. I believe a positive attitude, laughter and plenty of prayer is the only way to live.

I remember every hurdle Michael conquered: walking, jumping in a puddle, climbing the jungle gym and swinging all with one hand. I can picture every school and church play and recital. I have always been so proud of him. I’m not saying it was easy because life has been hard for us and a fight to stay positive. Michael started singing very early and I loved it when people in stores would comment what a happy child he was.

Life was hard because kids and some grown-ups can be mean and rude. Michael is stronger because of it though. If looks could kill there would be a LOT less people in this world right now. I may have been smiling at these idiots that are rude but my eyes were throwing daggers.

We met a wonderful man that I married Dave. Michael learned to ride a bike, skating, swimming and to shoot a rifle. Dave played cowboy and Indians with Michael, had snowball fights and took us camping.

I could never be the person I am today if Michael had not been born with this Ichthyosis. God gave me the son I asked for. We have a wonderful supportive family and church family. This past year I found a new family, my Ichthyosis friends like Carly. Thank you."


May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.


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