I wonder if our diagnosis day was not so close to her birthday if I would still remember it each year? Early on….sure, of course – 1st year, second year, 5th year maybe. But now eight years later – should it still come to mind? Should my heart still hurt? And eight years…how can that even be possible? One thing I can say is that I remember that first year – it was tough. I cried most of the year it seems (Looking back, I am sure I did not actually cry the entire year but it was tough.) Maybe because in that fist year there was so much unknown for me in regard to Rett Syndrome – all of the “what might happen” that comes with Rett. Eight years later and we have actually experienced quite a few of those fears: the loss of words, loss of hand function, loss of crawling, loss of walking, seizures, a feeding tube and while each of those things were horrible in their own right, we tackled each one, we survived each one. Sure, we still have unknowns and I have times where I am still scared and sad. I think that is normal, expected even.
But, today on this eight year anniversary, I see my beautiful ten year old daughter surrounded by friends. She is smart and silly and strong – so strong and determined. She is a fighter, she is LIVING this life with Rett in an absolutely amazing way so I guess if she can than surely I can too, right??!! Most days I think I do a pretty good job at it too! Mainly because I am not living this life with Rett Syndrome alone. I have Jon and my amazing family, the GP2C organization, and my Rett Syndrome family who love me through it all. Thank you for being my strength during my weak times and my smile during my sad times.
Most years when the 21st roles around it is one of those days that I allow myself to cry it out – with no judgement allowed from me (or anyone else.) Maybe this is my year not to cry and maybe it isn’t, who knows? It is still early in the day. Either way I am ok – I will celebrate one more year of surviving (dare I even say thriving?) this journey, one year closer to treatments and a cure for my awesome girlie.
THANK YOU to each of you who have been a part of our lives – whether from the very beginning of our diagnosis (you can read that blog post HERE) or if you have only recently entered our lives I thank you too! You each play a role in my life, in Brookie’s life and we are both so very very grateful!
*As a little addition to this post – if you happen to be a nurse, doctor, geneticist, or anyone who MIGHT be giving a family the news that their daughter has Rett Syndrome – I beg you to read THIS BLOG POST.