We have been on this wild ride of parenthood for over ten months now. The Guapos are amazing boys, both happy and charming, and good sleepers to boot, bless them. With six months under our belts now, we've also started to settle into the Fragile X Syndrome diagnosis, the Fragile X 'lifestyle,' as well.
I have tackled Moose's Fragile X the way I approach virtually all scary things (and let's be honest, most of everything else as well)... I get all fierce and intense and just try to devour the thing until every element has been inspected, intellectualized, and dispositioned. I am a walking catalog of the latest research in the journals, all of the therapy and medical terminologies, his developmental milestones in excruciating detail, the prevalence and efficacy of potential therapies, the biological and organic basis of Fragile X, and so on. I have personally met with the leading doctor in the Fragile X field, the magnanimous Dr. Randi Hagerman, as well as the foremost therapists, Mouse and Tracy from Developmental FX, not to mention the countless other national resources I've corresponded with. I attend every one of Moose's four therapy sessions each week, and keep the whole therapy team coordinated. I am constantly gathering and assimilating any and all information available about Moose and his condition and anything that could help him be more successful. I am hypervigilant.
In my spare time, I make homemade Halloween costumes and birthday party decorations, help my sister launch her new business, maintain an active social calendar, spend time trying to hug on and support my incredible husband who is the backbone of our family, make casseroles for friends and family with new babies and sick parents, handle all the finances, buy/wrap/deliver all the gifts, do the bulk of the cleaning and... I. Could. Go. On. Oh, and I also work full time.
When people ask me how I do it (to me they seem to be impressed, but that can only be because they are not actually seeing what a barely contained catastrophe I am from moment to moment), I give one of my two basic answers: either (A) I have no choice but to do the best that I can with what I have at hand, or (B) I don't really sleep much anymore.
Neither of these statements could be more true. In talking to other twin moms and to other special needs parents (I know only two other moms who fit into both categories), the 'what other choice do people think I have' sentiment is a pretty pervasive one. I get that before you have kids, the concept of them can be boggling, but what I find surprising is the number of moms who I hear this from. I mean, what do they do with their children, just phone it in all the time? Isn't doing the best you can sort of the main thrust of parenthood? I recognize the 'what you have' caveat can be a real game-changer. Moose and I would clearly be in a very different place without the support network and resources we have available to us. And I'm the first to beat myself up for taking the easy way out and not doing water play every night because sometimes it's just too much and I am only capable of so much. Nevertheless, it's pretty remarkable what you can accomplish when it's important enough to you, and when it comes to the Guapos, the very best I'm capable of is the only choice the vast majority of the time.
Which leads me to answer (B). Before the diagnosis I really did have it together pretty well. The Guapos were on a good sleep schedule, we'd hit our rhythm with the care and feeding elements, they were happy and healthy and devoutly adored. The childcare arrangements weren't perfect, but things worked. Life was good. There was balance. I even took a grad school class because I had free time after the boys went to bed each night. Then the diagnosis came, for a disability with no cure and unknown ramifications. The possibilities for permutations became endless. That is when the real sleeping stopped. Time of quality with my Guapos became even more paramount. Time not spent as such is now invested in optimizing our play time and daily routines. Even trivial things like showers are carved from sleep time (in my experience, only a parent of small children can appreciate the full thrust of this statement).
So, in the end, there is no magic. There's nothing super special or extraordinary about me. There's just me, One Fragile X Mama doing the best I can with what I've got, which does not commonly include a good night's sleep.
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