Thursday, May 31, 2012

In the beginning...

Here we go!

Lucien joined our family in March 2004. He arrived from Haiti a 21 month old toddler the size of a 9 month old with the development of a 3 month old. I knew he was my son a couple of months later when I took him to his first neurology appointment. I was told that he had Choreoathetoid Cerebral Palsy. I was told he would never walk or talk or ride a bike. I sobbed. Then I got angry and refused to accept this nonsense as truth. Over the next 4 years, Lucien learned to roll over, 

                                                                        sit up,

                        crawl, pull up to standing, cruise on furniture and walk with a gait trainer.

             He went to preschool.He finished kindergarten. 
During first grade he saw a second neurologist who confirmed the diagnosis, but after observing Lucien and reading his academic records and the reports furnished by the multitude of therapists who work with Lucien he told me "Thank God he's not bad." I don't know what expression my face wore as I tried to absorb these words, but I know what thoughts were racing through my brain...*What is he talking about, not bad? My 7 year old needs to use a wheelchair for his primary means of mobility. My 7 year old's speech is barely intelligible. Thank God he's not bad?!* I felt alone. I didn't have any friends with children who were physically disabled. I needed a support group where I could talk about these feelings that I was having. I needed to talk to someone who understood how I felt. I needed to talk to another mom who had a child like Lucien. I couldn't find a support group in my area so I joined a group online. They were very nice people. They talked about things like feeding tubes (Lucien doesn't need a feeding tube), seizure medication (doesn't need that either), severe cognitive deficits (Lucien is very bright), contractures (nope). I didn't find a "friend" who had a kid like mine. I found something else. Gratitude. I listened to all of these parents who will have to take care of their multiple-disabled children for the rest of their lives. Then I looked at my boy, who is gaining independence every single day, who is so smart, such a social butterfly in spite of his difficult speech and is so happy and healthy. With tears in my eyes, I though... Thank God he isn't bad.

Lucien has and will continue to face many challenges in his life, but he faces each with ease and grace. He has been an inspiration to so many people. And, he inspires me every day. He makes me want to be a better person. I want to be just like him when I grow up.

This is not my first blog, but it will be my best!

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