I know I’ve been MIA here for a bit. Duhdee had back surgery and I took on all the household tasks for a while there. It’s not easy being two people, especially when you have a little Monkey who’s a little thrown off by all the changes in routine. Fortunately for me, we have an amazing network of family and friends, both near and far, who took very good care of us! I will never be able to thank them enough for all the kind words and prayers that they shared…or the cookies, meals and Monkey-sitting! The outpouring of love was…well, it still brings tears to my eyes.
THEN, Monkey had a birthday. He’s seven now. Seven. On the one hand, I am shocked beyond comprehension how we’ve gotten this far this fast. It doesn’t feel like it’s been seven years since I first held this little boy in my arms and fell head over heels in love with him. It feels like yesterday. Of course, part of that is the fact that he is so sweet and lovable that he makes me fall head over heels in love with him every day.
Then on the other hand, I feel every one of those years as a weight in my heart. I remember when Monkey turned two, we’d just gotten the Fragile X diagnosis and we were still in total shock. We felt like our lives had been completely and irrevocably destroyed. Every dream, every wish, every imagined life event…*poof*
There were two things that kept me going back then…my love for my husband and son and the hope that we’d have a cure. I decided that we would have a cure before Monkey turned eight. We had to have a cure by the time he turned eight or we would forever be stuck in this horrible world of Fragile X. Eight was so far away back then, surely it would happen. There was talk of a cure, there were treatments and exciting research just around the corner.
Eight isn’t so far away anymore.
A lot of things have changed for us since then, we no longer feel like we are stuck in any sort of nightmare world. We love the friends and family1 that Fragile X has brought into our lives. We see the joy in having a child with special needs. I think we’ve experienced more pure joy in raising this little Monkey than many parents of “typical” children ever do.
Most parents of typical kids get to celebrate all those firsts…word, day of school, sleepover, driving, prom…but we celebrate every day. Every single word that passes his lips. Every block stacked. Every piece of train track assembled. Every question asked. Every answer given. Every single step forward that he takes makes my heart swell with pride and love. He takes my breath away. Daily.
So…what is the issue? Why is there still a weight in my heart? Apparently, some little part of my hindbrain is not with the program. There is this little tiny part of me that has, unbeknownst to me, been silently counting down the days to eight all this time. That little tiny part of me has started whispering…it’s almost too late…we’re never going to get away…we’re never going to wake up from this.
MOST of me is flipping that litte tiny part of me the bird and telling it to quit f*cking whining already. We’ve already woken up and we are exactly where we are supposed to be…we’re happy, dammit, what is your problem? The trouble is that while most of me can drown out the sound of that tiny little part of me…that tiny little part of me carries a blade. No matter how much I argue with the voice and win, it can still cut me and make me bleed.
My hope is that when we get to eight I can finally tell this little tiny part of me to suck it. It lost, we’re still here and we’re still happy. I’m just hoping that I don’t spend all of seven fighting this battle and missing out on the joy and love that surrounds me because seven is pretty f*ucking awesome and I don’t want to miss a second of it.
- Because, yes, I now have a few new sisters and brothers I would not have otherwise met. [↩]