I received a letter from my best friend from childhood, Tara. Tara has a daughter, Grace, with Rett Syndrome as well as 4 other children. Rett Syndrome is a unique developmental disorder that is first recognized in infancy and seen almost always in girls, but can be rarely seen in boys. Everyone in Tara’s life unfortunately knows more about Rett Syndrome than we ever wanted to; we live and breathe her struggles with Grace on a daily basis. The reason why I share this letter is as simple as that…to share; to share a mother’s struggles and joys in raising a child with a disability. I am in awe of all of you mothers!
My family is growing. Kids are great. I am now the mother of a teenager and my “baby” is happily enjoying Kindergarten! Grace is still fighting hard to maintain function of what she can still do. She is still walking. She gets tired a lot quicker than she used to. She doesn’t have much stamina. She is still beautiful and there are moments when she takes my breath away. She is still full of love has many bright moments of joy in her life. She is in school full time at Narragansett Elementary school and is surrounded by the most incredible staff and peers who find endless ways to reach out to Grace, accept her, and include her in their daily lives.
We have not made any communication breakthroughs with her so when the tears fall, I still don’t know why. I go through the list of what it could be and do my best to help her but with Grace, sometimes my best isn’t good enough and the tears continue to fall mysteriously. Sometimes I think for Grace, she must have those days where it just sucks to have Rett Syndrome. It has robbed her of so much. Then I pull my head out of those negative thoughts and remind myself of all the blessings that have come along this path of what we thought would be nothing but devastation.
As I look back over the last five years since Rett Syndrome entered our lives, I can certainly see many blessings. Most of those blessings are in the form of people who have come into our family’s orbit and managed to support us, comfort us and put up with us in our chaos and disorganized systems. I don’t make it to parent nights at school for my kids. I don’t attend most of my children’s athletic games and I have come to rely on wonderful friends and neighbors and at times, even “familiar strangers” from our wonderful community to provide rides and support to my children. All these people have been blessings in our lives and new people enter our hearts all the time.
As a family, we continue to pray daily for that miracle for Grace. In my five year old daughter Lily’s words as she prays… “And for Grace to have no more Rett Syndrome”. My children all still believe that Grace will not always have Rett Syndrome. I know that too, whether she is healed here on earth or whether it occurs on that day she goes up to heaven and is healed and finally becomes free.
I came across a Website that I wanted to share with you, http://siblingsupport.org/. The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.
They believe that disabilities, illness, and mental health issues affect the lives of all family members. Consequently, they want to increase the peer support and information opportunities for brothers and sisters of people with special needs and to increase parents’ and providers’ understanding of sibling issues.