Thursday, October 30, 2014

Diagnosis Day take 5

Today I wrote the following on a picture I posted on Instagram, "Five years ago today, I answered a phone call that brought be to my knees, officially bringing Rett syndrome into our lives. It was one of the loneliest and lowest days of my life. Today, 25+ faculty and staff members at Leah's elementary school gathered on the track after the final bell to run a 5k for and with Leah. My life has taken a course I never could have imagined but I am so grateful for all the wonderful people we have met along the way. Today, I felt the opposite of lonely..."

Sometimes when I think about that dreary day in 2009, it still takes my breath away. And not in a good way. In an I-don't-remember-how-to-breathe-because-my-life-is-spiraling-out-of-control kind of way. If I could travel back in time and kneel down on the kitchen floor with 2009 Maren, I would. I would hug her. And cry with her. And I would tell her it will be okay. Because goodness knows that Maren on the floor didn't feel that way then. I wouldn't give her false hope or fill her mind with rose-colored depictions of what day-to-day life will be like in her future, because that wouldn't be honest. But I would tell her it will be okay.  

I would tell her that yes, without a doubt, it will be hard; probably the hardest thing she will ever have to face. It will be a trial she will wake up with every morning and fall asleep with each night, forever. I wouldn't tell her this to scare her or aid in any more lost hope than she had just given up with the phone call she just finished. I would tell her this to prepare her. 

But, when she was ready, I would tell her she won't even be able to imagine the incredible people she will meet in the world a (yet to be made) friend Colleen coined, "Rettland". She won't be able to fathom the number of lives that cherubic little girl in the next room will touch. 

I would tell her about the incredible teachers and aides and therapists Leah will have in every state she lives and in every school she enrolls (oh, right, 2009 will move 3 times in the next 5 years and Leah will go to 5 different school programs). 

I would tell her about running marathons and 5ks and strollathons and raising thousands of dollars for research and awareness. 

I would tell her about eye gaze technology and how in less than 5 years, her daughter will start to read. 

And I would tell her that in a short amount of time she will not only be reaching out to other Rett families and asking for information and support, but newly diagnosed families will be reaching out to her. 

I would tell her Leah will be stronger and more courageous and more hard working than a mom could ever dream. And happy. She really will be happy. 

I would tell her that Leah WILL sleep through the night again. I promise. 

I'd tell her the support and love her family will receive will often be overwhelming and will almost always leave her breathless. This time, in a very good way. 

I would tell her she will make mistakes and fall asleep on a tear-stained pillow more often than not. But the good days will slowly start to outnumber the bad. And the tiny, broken pieces shattered all over that kitchen floor will, eventually, start to put themselves back together. And it will be okay. 

That's what I would tell her. 

I can't help but think what 2019 Maren would tell me now. She could tell me about the challenges the next 5 years will hold, because I have no doubt there will be challenges. But she could also tell me about the progress in clinical trials and technology. And everything that led to 6th grade Leah. She could tell me about big milestones and the little things that would only be noticeable or important to a mother. Because I have no doubt there will be plenty of those too. 

In the meantime, we'll experience the big milestones and little leaps as they come, because we're on this path together. 

Happy Diagnosis Day, Miss Leah. 

1 comment:

Unknown said...

i can never make it through a bean post without being a blubbering mess. We love you bean. #eatafatonerett