Saturday, July 17, 2010


Hi all.
Several years ago, after Abby was diagnosed I met and became online and on telephone friends with a great group of people who are also parents of A child with Rett Syndrome.. After a while I started a support group for us called Rettlanders. We started out on Myspace and eventually moved to Facebook. There have been 8-10 of us who message, talk or call quite frequently. Some come and go but are always there for us as we are for them.
We are as much a family for each other as any part of our physical family is. The bond you share with another parent of a child that was robbed from you is amazing. Almost every one of us can tell the same story of how it all went down.
2 years ago Abby and I went out West to the Oregon and Washington Line. There are 3 of the Moms that live within driving distance of each other in an absolutely beautiful area. Another Mom I had developed a strong bond with flew in too and we all had a wonderful time together.
Long distantly we had been through seizures,gtube surgeries, our own illnesses and operations. Birthdays, Christmas, Mothers and Fathers Day.
When we all physically met there was absolutely no weirdness about our friendship being online. We were sisters from the start. Sisters that get along..that is. I had never been more comfortable in a place with other people as I was when we all got together for a Rettlanders Slumber Party.
Everyone so naturally interacted and cared for each others children it is almost impossible to explain. When you have a child that everyone stared at and whispers about. When every single thing in life for her and for you is a struggle...being in a room where there is nothing but love and acceptance is so heartwarming. I was brought to tears many times at how comfortable I was there with these women.
There are several others of us who were not able to make it that time or this time. It is very costly and very hard to pay for flights and arrangements. To carry a child with physical needs, a wheelchair,bags,meds,luggage. It is quite the struggle. The other parents have several other children and lives that don't let them just go. And we missed them.
We promised each other that we would do it every year but that was not the case as life happens.
I would love for us all to be able to get together somewhere so they can share in our family and our craziness.
I took a zillion pictures of my trip so I put them in a slide for easier viewing

1 comment:

Kelly said...

SO glad that you had a GOOD time!!! Hugs to you and Abby!!