Monday, May 13, 2013

why it's important.

I have been posting a little on Facebook about this years Walk With Angels.  I also wanted to write why I believe this is an important foundation. One that I really support.  When we had Leighton it was hard. The only people who spoke to us about it had no first hand knowledge of what it was like to actually raise a child with Down syndrome. They didn't know anything beyond what medical issues to look for, and to basically tell us we were going to be spending a lot of time at specialist. Honestly they made us feel our lives as we knew them were over and this child was going to strap us down for life, and good luck with that!  Two days after Leighton's birth we had a hospital visit from Untited Angels. Two Moms who had Down syndrome children came and talked to us. They answered our questions and told us about their experience when they found out. They cried with us because they knew our fears, but gave us such hope, they showed us that our life would still be happy.  The best part is it hasn't stopped there. We have training classes on special needs trust, mainstreaming our children, development toys, behavioral issues (to name a few). There is always someone willing to help with advice like using  GI tubes, or GJ tubes (things  you would never need to know about unless you lived it first hand)  Doctors and dentist that work well with our children.  The group isn't limited to just Down syndrome, it is inclusive to all families with a child who has special needs, Autisim to undiagnosed genetic conditions, because the founders realized that a lot of the medical concerns, and learning and motor delays are the same through all types of disorders.  We have play groups and activities where parents can come and feel like their children belong, parents can meet other parents dealing with the same thing (open heart surgery, brain injuries, seizures) the siblings can meet other siblings who know what it's like to have a brother or sister that needs a lot of extra care.  This is the only fundraiser of the year. This walk funds the classes and activities so they will be free of charge to families that spend a bulk of their income on medical bills. The truth is these babies and children are loved. Their families want the best life for their little ones and this army of special needs parents helps give eachother the tools to fight for the best lives possible for them.   I love this foundation because it services a real need in our community.  Our little Leighton may not seem scary, but some of her secondary diagnosis that have accompanied her Down syndrome diagnosis have been really hard to watch her go through and I'm glad I have a support group of moms that KNOW from experience how I feel, can give me advice on what I should and shouldn't do, which doctors to use, and what to expect.



I'm so thankful that we were put in contact with this foundation. Hopefully you can see why it's so important to our family.  If you want to help support our team and this great cause you can visit our page Chrome Cousins any little bit will help reach our family goal.
-JS

1 comment:

  1. Love your post Jess! And love you and your famiy!

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