Tuesday, October 30, 2012

Diagnosis Day

It’s been three years. 

Three years since I got the phone call that dropped me to my knees and left me in a pile of tears. 

Three years since we got answers we didn’t want, but were grateful to have. 

Three years since we joined a group of some of the most amazing girls and families anyone could ever know. 

Three years of Rett syndrome. 

That’s more time with Rett syndrome that without. More time spent wringing hands than using them to read books. More time spent communicating with eyes than with a voice. More time being spoon fed than eating independently. More time spent at the neurologist than ever before. More time getting EEGs, EKGs, MRIs and blood draws than any five year old should have to spend. More time in IEPs discussing therapies and accommodations than I ever knew possible. More time researching sleep and seizure medications and side effects than I’d like to admit. 

But it has also meant more time relishing the small and simple things. More time spent celebrating each increase in ability. More time being humbled by the kind and selfless acts from family and friends. More time spent understanding the true worth of a soul, not all we try to decorate it with.

And, ironically, more time spent on my knees. That phone call on the afternoon of October 30, 2009 got me there and I’ve found it’s actually the best place to be. I have felt more love and comfort and strength from my Father in Heaven than I know I would have otherwise felt. I’ve been at the end of my rope on more than one occasion and He has given me the hope and strength to hold on. 

And there is good reason to have hope. 

Hope for treatments for Leah. 

Hope for a cure. 

It’s with that hope Ryan and I are thrilled to announce we will be running as part of Team Rett in the 2013 Boston Marathon. Twenty six point two miles. Training in New Hampshire. In the winter. It seems crazy, but I know we can do it because we are running for Leah. For treatments. For a cure. 

And we need your help to raise the funds to get there. If you have the means, we’d be honored to have a donation. Blog about it. Post it to Facebook. Tweet it. Send an email to your friends, families and co-workers. See if your company will match your donation. Talk about it and spread the word. 

It’s been a long three years. We have learned so much of patience, kindness, hard work, determination, laughter and love from our sweet little Leah. Though she still walks, she can’t run a marathon. And so we will race for her. Because we believe in her. We have hope that one day, she will run a race - completely different than the one she runs every day of her life.


Josh and Laura said...

You are amazing Maren. This post totally made me cry. I kept thinking how heartbreaking it would be if I saw Bryn experiencing those symptoms of Rett Syndrome. I can't believe how strong of a person you are, and I can't imagine how difficult it must be to watch your child deal with something like Rett Syndrome. I just think the world of your family.

Liz Igoe said...

Maren you are the most amazing person in the world! We will be there supporting you guys no matter what! I am proud to call you a friend. You guys will kick butt at the race and there will be many many signs for Team Leah! xoxo

Amy said...

I'm so excited for you - Boston!!! I seriously felt so much love for Leah as I've trained for this marathon. Even friends and family of mine who don't know her were suddenly touched and compelled to ask questions, donate, and even tear up when learning more about her and Rett Syndrome. Her effect is far-reaching. You are amazing, and you and leah are so lucky to have each other. Can't wait to hear how it goes!
p.s. I think I'd choose to train in cold weather over hot/humid weather any day! :)

carolee said...

Very cool!