When Larkin was born I searched the Internet for information. Not such a great choice when you need CORRECT information about Down syndrome.
I did find a woman who had posted a comment to a message board. Renee, was taking a group of people to task for their ignorance, prejudice and basic unkindness in regards to people with Down syndrome. I emailed her and explained that I was a new parent and had found her via AOL and her comments. I needed help and wanted to find a group to give me information. Renee gave me the world of downsyn.com – my around the world online family.
Renee guided me, talked with me and helped me find my way in this world that was all too new and too raw for me. Renee’s husband Frank, is a solider fighting in Iraq. She has 4 children one of whom has Down syndrome, leukemia and now has had surgery to fuse her spine and her neck. Children with Down syndrome have weakness’s in several areas. One being that they are prone to leukemia but they respond better then a “typical” person does to chemo. Two, they must have x-rays done of their necks beginning at age 3 to look for a gap between the neck and spine. Larkin will have her x-ray done within the next few months.
I have kept Renee and Kennedy in my heart and prayers for a very long time. Renee has posted their surgery journey on her blog along with pictures. The pictures have caused me to feel “un-done”. My heart hurts, my head aches and I am scared for Kennedy and I can’t imagine how Renee is holding it together. Today – please take a moment and say a prayer.
Think of this little family that has helped so many others. Pray for this mother who is keeping it together. Pray for this father who flew home from Afghanistan to be with he daughter. Pray for 3 siblings who need their Kennedy.
I hear what you’re saying. I’ve been in tears on and off since the first picture posted. Renee is an amazing woman. I’ve been following her updates fervently. And praying in between rants and questioning and anger.
Thanks, Amy, for the sweet words and the prayers! We love you!