Tuesday, February 26, 2013

The first day of the rest of our lives

One year ago today, February 27, 2012, Dr. Coffman called and said Lucy had Rett Syndrome. One week after that day I looked at Chad and said, "Well, a week has passed and we made it."
At that point, and for quite some time after, we were just trying to get by, not cry, and keep going. We kept trying to remind ourselves that nothing had changed for Lu and that we had to keep our heads up and not bring her down too. It was a pretty rough time for us; besides the devastating news, it was also Chad's last semester in school and we were anxiously waiting to see if Minitab was going to hire him.

Truly a day does not go by that Lucy does not amaze us in some way and so I inevitably think about stupid Dr. Coffman and his misinformation on a very frequent basis. I know I have said it many times before, and I'm certain I will likely rant on about him for the rest of my life, but how could he say the things he said, when they are just not true? How could he give a family information without being 100% certain that it was accurate? And maybe he thought it was, but he was wrong and therefore negligent in his duty to care for patients and their families! In the past year, Lucy's brain has most definitely NOT been deteriorating, because Rett Syndrome is NOT a degenerative Dr. Coffman said it was! He said she would just continue to lose abilities...but wait, in the past year she has learned to stand for longer and longer periods of time, take steps with support, and use her head to signal yes and no while navigating through a communication book! Hmmm. Oh yeah, and has started feeding herself somewhat...again.

Dr. Sasha has a patient in her 60's. Dr. Coffman most definitely led us to believe that only "some" girls live into their 20's and 30's. In blogs that I read by other mothers who have daughters with Rett and on Facebook sometimes, I am always surprised when someone says something about a shortened life-span. I know that is likely the case for most girls, but when I read something like that it makes me realize that I don't think about it. In the past year, I believe that I have learned to think pretty much about "today". That can sometimes include this week, this month, and even this year. But I guess I have learned, thankfully, to not sit and dwell (too much) on what Lu's life will be like in 20 years. Two months ago she was not talking to us daily with a PODD book, and one month ago she wasn't helping feed herself again...who knows what tomorrow might bring!

This day one year ago was bad, no doubt about that. Today is hopeful. I still get sad, and mad, and cry, and I always will. But we just have so much hope, with or without a cure, for the life Lu will lead. An example I'd like to share is about a beautiful handmade recipe box I have. My maid of honor, Ann, had her dad make it for me for a wedding present. When Lucy was born I started organizing my recipes, re-writing them, gathering them up, to pass on to her someday. After the diagnosis I was heartbroken and believed she would never be able to use it; just one of the million things I thought she would have to miss out on. I have continued to "work" on it here and there, but the other night I realized, of course she can still use it! She'll need to borrow someone else's hands, but what's new? That's what this year has taught me and helped me to accept. Lu can't do many things on her own, but she can do anything with our help!

Rett Syndrome is certainly not the worst fate that could've befallen us, but it was pretty bad, and as a family we have not just survived it, but we have thrived. We are stronger than we were, tougher, braver, and smarter! Life is good.

"Promise me you'll always remember: you're braver than you believe, and stronger than you seem, and smarter than you think." - Christopher Robin to Winnie-the-Pooh, from The House at Pooh Corner by A.A. Milne


  1. You guys are an amazing family! A perfect fit for Lucy!

  2. Julie -with that attitude you and Chad and especially little Lu will indeed go far -very far!

    People who, when they learned that my two younger grandchildren are both autistic frequently commented to my daughter and to me how sorry they were to hear that news. I, on the other hand, have always dealt with these two in my family just the same way as with my older grandson, my own kids when they were growing up too! I know, initially, my daughter was very upset which I attribute now to the fear of the unknown. Today, she is one very strong woman, who deals quite well with the scope of the issues that the autism factors bring -some days are golden and others not near as shiny -but you know, even children born without these "problems" don't always have one great day after another either! None of us does but each day brings something new, big or small, good, bad or indifferent. As long as you look forward, look up, learn, learn, learn -it makes all the difference in the world to how things are perceived. You and your family are proof of that!