With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.
We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values. There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values. Here are a few of the new or altered Family Values that I have learned.
Taking it in stride
When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride. This is not an easy change to accept, but it is a change that must be accepted. Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do. Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.
Perspective is another great lesson that I have learned from my daughter. My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster. There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday. “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.
I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief. For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this. Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome. My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.” But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?” For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day. Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.
Finally, Rett has taught me and my family to Hope. I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life. Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true. Hope must be constant and unfaltering. Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.