Monday, August 27, 2012

Eli's Allies

The Lord has a funny way of teaching me faith. A few years ago when I was pregnant with Keila we recieved a false positive for Down Syndrome and was given the option of an amniocentesis. It was one of the things I have feared the most simply because I know my weaknesses and I didn't think I could raise a child with special needs. After much debate we didn't go through with the amnio due in part to the risk to the pregnancy. In a discussion wiht a friend, she asked if it would honestly make any difference to know since abortion was not something we believed in. I realized that the control freak in me just wanted to know before birth so that I could read and be prepared for 'everything'!

Ironically in all my testing during my pregnancy with Elias, there was only one small possible indicator that put me at 1 in 1500 chance of having a child with Down Syndrome. Dr. Desalvo was shocked because I was the first patient in all these many years of his practice that 'slipped' through the cracks. When we first got Elias' diagnosis of Down Syndrome we were rather overwhelmed. It was a new ballgame dealing with 3 children. Vacation time for Kent was used up for his birth and subsequent phototherapy treatment. There was a torrent of doctor appointments and I was just functioning to feed everybody and keep myself as alive and awake as possible wiht a newborn.

Now, when I truly needed it, I didn't have the time to go out and research to know what I might be up against with Elias' diagnosis. I did have one friend who knew from experience with her own son which was of great comfort. But I also knew I'd have to learn to advocate for my son's needs, learn the laws and resources avaliable to me. This is where Sharing Down Syndrome of Arizona became a huge resource.

Gina Johnson began the organization years ago when she realized how little there was in AZ to support parents in a positive way. The organization makes a point to meeting individually with parents and children with Down Syndrome. From my conversation with Gina, I believe she makes most of these visits herself. We chatted briefly on the phone and I could tell she was an intensely passionate soul but nothing quite prepared for all the 'little things' she'd bring.

She was most definately prepared. She had brought coloring books to keep Isaac and Keila occupied while we talked. As she cuddled Elias she shared with me her story, how she learned to advocate for her son David, the wisdom of seeking and using as many resources as possible, most of all she keep reassuring me that Elias would be a treasure in our lives we could not yet fully comprehend. After our 2hour 'chat' she loaded me with matierals: books to help comfort, positive helpful books on therapies and legal issues related to children with DS, a picture book for my children to help them understand their sibling, resources for Elias like signing time DVDs, journal, books, blankets, CDs, etc. All in all the materials must have costed over $200 and finally she urged me to call her again if I ever needed anything.

I can't begin to explain my gratitude. The organization helped us emotionally and physically with no strings attached. For that reason Kent and I wish to give back somehow. They hold an annual Down Syndrome Walk in Tempe free of charge full of fun activities for friends and families who have someone with Down Syndrome. It is their main fundraiser and despite being the least likely of people to do such a thing, we've formed our own team - Eli's Allies to raise some funds for them. Feel free to join us for the walk on Sat Sept. 22 at the Diablo Stadium or feel free to donate whatever amount you are comfortable with using this link. If you wish to donate to a particular team (say Eli's Allies!) you can select the team which will help to our goal of $200. Or if it's easier, we have our own page.

A big thank you again to all those who have been with us on our little journey. We are grateful to be blessed with Elias and feel the warmth and support of friends and families. You are truly Eli's Allies!

PS Special thanks to Shannon Baker for the name for our team. Otherwise I'd still be agonizing over it. It was one of those 'speed bumps' I needed to be pushed over so I could keep moving! ;0)


  1. I am so glad you have gotten such great support! We had a great program in Colorado too :) I will never forget those meetings! You can give back someday too, right now you are still figuring things out! lots of love :) and love the team name :)

  2. you are an amazing women! i love you and i grateful that you are so open with so much. wish we could do the walk with you!