Saturday, June 15, 2013

The 'Real' Teacher

Today's gift is being the 'real' teacher.

I just thought it was fitting to title today's post the real teacher.  After all school ended yesterday and my blog is about the gifts my daughter gives to me....daily.

I am not the only one who she gives gifts too.  But not everyone can express or feels comfortable releasing their true emotions on loving someone with special needs.  It is hard.  I kept my true feelings bottled up for a real long time.  You don't want everyone to know.  You want to make it seem all rosy for everyone else, when in reality it is not.

Then one day I realized holding all my feelings inside was making me feel worse rather than better.  I realized I didn't want to paint this "rosy" picture.  I wanted my friends and family to realize there are ups and downs and sometimes the downs are way down.  I wanted them to know our true story...with the good and the different.  This is us.  This is our family.

I didn't want to tell the story for sympathy, but so they can understand.

Today my gift is seeing how my daughter has been the 'real' teacher to my husband.  How she has gotten him to open up about his feelings.  I know them.  But many do not.

He was asked to write a post for a blog, called Rett Girl.  It is beautiful.  It is honest.  It will bring you to tears.

I hope you enjoy it and can see a different side of our Rett World...a side from the my daughter's father...her true prince (and mine too!).


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.

Instead of a quote for today....I will just leave you with these two pictures of the two of a picture is worth a thousand words..

they were dancing down the sun at the beach

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