Ten days, gone.

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 family ((Because, yes, I now have a few new sisters and brothers I would not have otherwise met.)) 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.

9 thoughts on “Ten days, gone.

  • May 18, 2011 at 10:11 am

    yes our little Monkey is quite amazing at 7 and just look how far he has come. He brings the world together for us and makes us proud each and every moment.

  • May 18, 2011 at 11:05 am

    Love the paragraph about celebrating every day! I love reading your blog Melissa, you capture our FX so well. Thank you!

  • May 18, 2011 at 11:12 am

    Thanks Laurie! It’s the very best therapy I’ve ever tried 🙂

  • May 18, 2011 at 11:44 am

    I enjoyed reading your blog and I can so relate to it! My FX boys are 21 & 26 and I wish I could go back and re-live all the great moments with them. I have that same little part of my mind that you described, but over all, they are awesome sons and make me laugh and proud all the time. Enjoy every moment, they grow up so fast!

  • May 18, 2011 at 11:45 am

    Thanks Charlotte! I looooove hearing this from moms with older boys. It is so nice to know that the good times keep coming!

  • May 18, 2011 at 1:28 pm

    you put this all down on “paper” so well. we’re so grateful to have you guys in our corner 🙂 and take it from me – 7 year old boys are really fun and crazy!

  • May 24, 2011 at 1:58 pm

    I’m having a laugh-cry from reading this.

    We’re in the process of exploring our medication options for H, and one of them being minocycline (sp?)…

    I’m reluctant over the known (and unknown) adverse effects. And just recently I was having a conversation with our pharmacist, and I said do you think that it might help that H does not yet have all of his adult teeth? So if his baby teeth become discolored, and then fall out, will the adult ones grown in OK? And he said well, it’s actually systemic and not topical. So if anything, the permanently hardened enamel may reduce the side effect on the teeth. And I said when does that happen? And he said age 8.

    So here I was wishing, just for a moment, that I could fast-forward 2+ years to age 8 and have fewer reservations about starting him on this medication.

    I now find comfort in knowing that the older they get, the more years of clinical trial research we can compare to. So at the very least, maybe next year when Caleb turns eight, celebrate the fact that we’re another year closer to FDA-approval of a treatment. And maybe even a cure. Doesn’t have to be that year, because either way we’ll be a year closer.

    But most importantly, just remember that even what our kids have now, is in a sense, like a cure. I mean the services, the knowledge, the therapies, the doctors, the experts in the field… not to mention the awareness. I mean, compared to what they would have had when WE were their age.

    The world has come a long, long way… and that’s a really good thing.


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