Monday, March 19, 2012

A Very Special Wish

I remember one of the first families that we met when we were diagnosed with Rett syndrome had a daughter a bit older than ours.  One of the many things they encouraged us to do was to get set up with a wish granting organization.  They had just come back from an amazing trip with their Rett girl and were thrilled with their experience.  It was amazing to me that an organization would grant wishes but also, at the same time, a bit scary.  I sort of thought of those wish organizations as something that helped terminal kids and I was not about to ask my daughter what her "last wish" might be.

Time ticked on and I became more educated to the special needs and medical scene and I realized that wish organizations are not  for "last wishes" rather they are to offer some joy, peace, normalcy, relief and FUN to a child who has certainly gone through enough.  With that bit of understanding and when we believed it was right for our family we decided to take the plunge and register!

Maybe you have thought about giving your Rett girl a wish.  Maybe she has already had a wish granted and your family has amazing memories or are still living with the special gift your child chose.  Maybe you have the same concerns as I did and fear that a "wish" coincides with mortality.  Well, I'm hoping that this blog post gives you some ideas of wishes, introduces you to different wish organizations and eases your fears of moving forward with a wish.
First, where do you start.  Well, of course everyone has heard of Make - A - Wish.  An amazing organization and, as their mission statement puts it, "We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy."  The child must be between the ages of 2 1/2 and 18 years old and have a life threatening condition.  The first step in this organization is to refer a child online or to call your local chapter.  The only people who are able to to refer the child is  the child themselves, their parents or doctor.  To make sure the child is medically eligible their doctor will be contacted.  Once that step is done Make A Wish will contact you to let you know if you are being granted a wish!

There are many organizations besides Make-A -Wish that are committed to enriching the lives of children with life threatening conditions.  When looking into organizations you want to keep a few things in mind:

#1 How involved would you like to be?  There is a local wish organization that is right down the street from us.  They have a wonderful reputation and keep their wish families close long after the wish has been granted.  They have an annual Christmas party for their families and involve them in fundraisers.  If you want to have your family more involved an organization like this may be where you want to look.

#2  How old is your Rett Girl?  Many organizations are set up for children 18 years and under but there are plenty of organizations that grant wishes to adult children as well.  Don't think that you have missed out, you can still give your adult child a wish of a life time.

#3  Is your child even eligible?  A Rett Syndrome diagnosis does not give your child a free wish.  With nearly all of these organizations a form is filled out by your child's doctor that determines if they are medically eligible to receive a wish.  Choose a doctor that knows your child best and let them know in advance that you are thinking about working with a wish granting organization, ask them if they think your child would be eligible.  This way you are less likely to be surprised by the outcome.

#4  Is your Rett girl and your family ready?  I know that with my Rett girl I wanted to wait until she was able to voice her opinion on her own wish.  We got her really consistent with her eye gaze and took lots of time to determine what we thought she really enjoyed and what she told us she really liked and waited until we felt our daughter would be physically able to make this decision.  We also prepared our family, knowing that one of daughters wishes may be a trip that involved the entire family we planned for a year where we were able to get time off of work and be able to get away.  Your Rett girl may want an item rather than trip - if she wishes for a hot tub or a newly designed room or something permanent it goes without saying that you want to make sure that there are no plans to move in your near future.

Watch a video of Mikyla, a Rett Girl, getting her wish to walk granted here

If  your Rett girl and your family are ready to take the next step then the Family Village/ Disability Culture has a wonderful list of Wish Granting Organizations that are organized by location.  This list is very complete but was last updated in 2009.  With the condition of the economy for the past few years it is good to do a reality check and make sure the company you choose is still functioning and is still able to grant new wishes.

1 comment:

  1. Thanks for posting this great article! My husband and I had the same misunderstanding you did originally about wishes being only granted to children with terminal illnesses, so it is good you are disspelling that myth. Once we got past that misconception, I had to get over the guilt of thinking we were taking the spot of some deserving terminal child, but there are plenty of wishes to go around. :0)

    Our daughter's wish to go to DisneyWorld was a once-in-a-lifetime memory the whole family enjoys to this day. We were blessed that it fell during a time she was in good health and able to really enjoy our time in Florida. I can't speak highly enough of Give Kids the World, the amazing organization that provided our housing (which could be considered an amusement part all on its own!).