Sunday, November 13, 2011

Our Special Children and the Bonds that Bring us Parents Together

No one has ever said "Your Blogging is silly Danielle" but my husband has made comments like "how can you tell me you didn't have time to make dinner you posted 4 blogs today" (lol)

If there is anything I could ever have taken away from this Blog, its the beautiful Nature of Parents with Children who Have Special Needs.  Whether is be Autism or Cerebral Palsy, Downs Syndrome to Krabbe Leukodystrophy.....we all have a bond that makes us a community. 

A year ago, I stumbled upon the story of Anaya.  I was on a page that was for Breastfeeding Mothers and there they had posted a need for Breast Milk for this dear girl.  Anaya suffered from Krabbe Leukodystroph Disease,  which is a rare, often fatal degenerative disorder that affects the myelin sheath of the nervous system.  I had wanted to pack up some pumped breast Milk and ship it to Canada, but seeing that I couldn't even pump enough for my own child, it wasn't really possible.

I followed their story, praying for some sort of miracle, I watched in March as they thought they were going to loose her, and that tough little girl pulled through it.  I watched her turn two in August and thanked the Lord for letting her make it to that Milestone.

A few days ago Anaya's mom Camara had posted that they were sure Anaya had Pneumonia and were bringing her to the hospital.  Unfortunately, it wasn't Pneumonia, Anaya's lungs had stopped working and she needed to be on life support to stay alive.  The decision had been made by her parents to take her off the life support and let her pass.

24 hours ago I learned of the situation and started praying.   I posted a photo of Camara holding Anaya getting ready to soon let her go and so many people sent their prayers  In those 24 hours I have seen Anaya's Facebook group grow by over 2,000 people.  In 24 hours I watched people out pour love to a complete stranger and in about 1 hour  I watched an Autism Mommy Frantically search for a Photographer though Now I Lay Me Down To Sleep to volunteer to take Pictures for Anayas family as they spend their final moments together. 

Anaya is now grown her wings, but it was a beautiful gesture by "Autism is a Trip" that made me realize we are really a community, and a community of good people at that.   Wendy and Jessica (who took the photos), you have wonderful hearts!  You restore my belief in humanity.  We are a community and I'm so happy to be part of it.

Rest in Peace Sweet Anaya, may you be with the Angles......

1 comment:

  1. So much love and light to you. <3 <3 Namaste, friend <3 <3

    Wendy @