I want to set the record straight.
I get a lot of compliments regarding my strength, my bravery, my unwavering devotion to my daughter, and my “aptness” for this role of mothering a special needs child. These pronouncements make me bashful…but please, keep them coming, as they are well warranted. 🙂
But I feel uncomfortable accepting all this praise (again, please don’t stop) without also admitting how crazy freaking hard this is for me, and how often I stumble and worry that I’m letting Mira down and failing to fulfill my expectations for myself as her mother.
I will forever be a warrior for her, but it is so strength-zapping that sometimes I fear I’ll simply empty whatever reserve of fortitude I’ve been drawing from these last months and just…fail. And I’ve been told by people who have been in my position that the strength I will need will come when I most need it, and I believe them. I believe them because I trust their guidance based on my knowledge of their experiences, but also because I feel like I have to, just to maintain some modicum of personal sanity.
Because if my strength runs out, then what? That can’t be an option for me, and more importantly, it can’t be an option for Mira.
I would like to point out before I continue that despite Mira’s challenges, we are extremely fortunate and I do not ever take Mira’s health for granted. The families with whom I have connected over this experience often have children far more medically fragile than Mira, and have experienced more uncertainty and heartache than I can imagine. I often feel guilty for even putting myself in the same boat as these families. However, I am tremendously grateful to have been welcomed into their fold, and look forward to many years of friendship and fellowship with them.
This is how Mira wakes up in the morning. Every morning.
As I was communicating with other mothers of GNAO1 kids today on Facebook, I was reminded again of just how much truly terrifying shit may likely head our way in the coming years. And I sort of just shut down emotionally after reading all of their stories and comments. Because I honestly don’t feel like I have the strength to worry that much about Mira right now. I’m working diligently to keep my focus in the present and practice gratitude for the beautiful life that I share with my husband and daughter.
That being said, I still freak the eff out sometimes. Namaste.
I’ve been trying to find ways to work through my freakouts, and today, it’s writing. As you may have noticed, I like quotes a lot. I think other people say stuff more gooder than me do. This post did not start with a quote as most of mine do, but I will now proceed to use approximately one billion of them in a feeble attempt to share with you all my personal experience of being a mother to the most special little girl in the world.
Mothers are all slightly insane. -J.D. Salinger
Insanity is hereditary – you get it from your kids. – Sam Levenson
This isn’t just me, right?! J.D. Salinger said ALL OF YOU MOTHERS ARE INSANE. But I definitely feel like maybe I’m slightly more insane than some (most) mothers. I think I was sort of a nutjob before I had a kid, and now I am just full-on whack-a-do. And I don’t mean I’m insane in a dangerous way, and I certainly don’t mean to be derogatory to individuals with mental illness. I just mean I sometimes feel much more tethered to her emotional and physical needs than my own, and it’s a pretty weird feeling, one that makes me feel a little nutty and disconnected from myself sometimes. Does that even make sense???
I also sometimes cry soooooooo hard. Like just the absolute ugliest, weirdest-sounding, grossest crying imaginable. It’s been under wraps better since I started taking an antidepressant, but sometimes it still surfaces, and oooofff…it’s bad. So when I hear people tell me how strong I am, I picture myself with snot running down my face and think y’all are plumb wrong. Because in those moments, the words “weak” and “helpless” and “terrified” only scratch the surface of what I feel. And sometimes it’s not that dramatic, it’s just crying on the way home from work or at the park or in the store, and most of the time, James doesn’t even know about those smaller episodes (surprise, James!). Because they’re fleeting and I just tear up, swallow hard, and move on, so they don’t seem worth mentioning. But they happen pretty regularly, and they’re annoying.
And I love that second quote because it’s exactly how I feel about interacting with Mira. Kids are so weird and they do such bizarre things that make perfect sense to them, but to us, we’re like, “WHY THE F*#@ DID YOU JUST DO THAT?!?!” But then almost immediately after having that thought, Mira somehow convinces me that whatever she just did or “said” is the most reasonable thing ever, then that somehow turns into me thinking it’s hilarious that she just so openly defied the rules of decent society, and we end up laughing hysterically together for minutes on end at our own irreverence.
Example: I should not let my very young child drink coffee. But I gave her latte foam. And she loved it. So then I put water in the empty cup and it mixed with the leftover latte dregs and I let her drink it. And then she publicly screamed at me repeatedly for more and more drinks. And I just kept giving her more latte water! What has become of me?!?!
“Whatever else is unsure in this stinking dunghill of a world a mother’s love is not.” -James Joyce
I hate a lot of things right now. And I have A LOT of uncertainty about the future. But I know in my bones, with more clarity than anything I’ve ever known, that I love my child beyond my own capacity for reason. It’s truly baffling to love someone this much. And hard to explain how deeply I just know in my heart of hearts that there is nothing I wouldn’t do to secure the best possible future for Mira.
“Being a mom has made me so tired. And so happy.” – Tina Fey
I know this dichotomy is not unique to me or to special needs moms, but it’s still worth mentioning. I feel so tired all of the time. And not because Mira doesn’t sleep through the night or wakes up super early, because she’s been an excellent sleeper for over a year now. I honestly think it’s just this emotional baggage I carry around everywhere, the weight of which just totally wears me out. That, and I drink a lot of wine. But I wouldn’t trade this bone-deep fatigue for anything, because it means I get to experience the immense joy of parenting Mira. Also, I refuse to stop drinking wine until I get pregnant again, so there.
“In giving birth to our babies, we may find that we give birth to new possibilities within ourselves.” – Myla and Jon Kabat-Zinn
For a long time, I felt like the poster child for wasted potential. I screwed up a lot of relationships, bounced around from job to job, and just generally lacked purpose or drive. But then I had Mira, and now everything is so much clearer. My relationship with her has unlocked this deep well of ambition within me, and now I want nothing more than to show her, and myself, what I’m capable of. I want to make my daughter proud, and I know now that I can do it.
“Everybody knows how to raise children, except the people who have them.” – P. J. O’Rourke
I have no freaking clue what I’m doing. I had all of these plans on how I wanted to parent and was, frankly, a judgmental bitch about the way other people parented before I had a child of my own. Then I had a kid and I was like, “Oh daaaaaamn this is crazy! Screw my plans!” Then I found out my kid had a disability and I was like, “Oh shit. Oh man I am such a shit. I feel really really REALLY bad for ever judging anyone on how they choose to navigate this messy world.”
“Your children are not your children. They are sons and daughters of Life’s longing for itself. They come through you but not from you. And though they are with you yet they belong not to you.” – Kahlil Gibran
First of all…UUUUGGGHHHH I LOVE KAHLIL GIBRAN.
Now that that’s off my chest…
I have this weird, almost spiritual sense, that Mira is not ours alone. And that’s super bizarre for me to say, because I ascribe to no one religious or spiritual belief, so this has nothing to do with God (for me). But I sense, in mothering her, something bigger than myself. Like I really was merely the vessel through which this splendid ray of light appeared to grace the planet with her loveliness. She seems ethereal, other-worldly, and destined for a great purpose. Maybe this is making me sound insane (see above), but I really feel like the world has a great deal to learn from Mira, and that I cannot cling too tightly to her so that she may have an opportunity to prove all that she is capable of as an individual. I think she has the power to guide the lives of those around her toward a more meaningful purpose, and I’m just happy I can act as a conduit.
“A mother understands what a child does not say.” ~ JEWISH PROVERB
WHOA. This one hit me like a ton of bricks.
Even though Mira doesn’t talk or sign and likely never will, I truly feel like I understand her better than anyone on the planet. Don’t get me wrong, there are certainly times when I’m in the wilderness with her communication and have absolutely no clue what she’s going on and on about. But more often than that, I feel connected to her in a way that I am not with anyone else, even without her ability to talk to me in a traditional sense. I think a lot of mothers have this with their babies, so I’m not bragging (even though I really, really want to). This quote just struck a deep chord with me, because I feel like, for now at least, I am my daughter’s voice.
“Every mother is like Moses. She does not enter the Promised Land. She prepares a world she will not see.” ~ POPE PAUL VI
Aaaaaand now I can hardly breathe. Because this is the crux of what’s so damn hard about mothering Mira. The stark realization that I will leave this world before she does (please, God, let that be the case), and I don’t know what her life will look like after that. I know she’s only 17 months old and I may be being a bit dramatic…but goddammit, I think about this EVERY. SINGLE. DAY. Am I doing enough to make her future bright? Will I have the strength in coming years to continue to keep doing all that she needs from me? Will I be physically capable of tending to her daily care needs as she and James and I get older?
James and I have to prepare the world we want our daughter to live in after we are gone, and sometimes that burden seems too much to bear. Can’t someone else do this? Can’t we just worry about whether or not our kid will save enough for retirement or find a job they like or get married to a nice person or give us thousands of grand-babies? Why do we have to worry about where funding will come from to provide round-the-clock care to our adult daughter who can’t carry out simple daily living tasks? Or worry that having more kids is actually really selfish because we’d expect them to help shoulder the responsibility of caring for their older sister? Maybe she’ll be able to toilet herself one day, or cook simple meals. Maybe, but probably not. I obviously don’t know everything, and will await whatever surprises Mira has in store for us. But she will inevitably face so many challenges that I wish she didn’t have to face, and I loathe the thought of her having to face them without me one day.
Mira has been really into this doll lately. Every night, we read with Sadie, then put her in some jammies and tuck her into the rock-n-play by Mira’s crib. Then Mira knows it’s her turn to go to sleep, and she happily does so as she keeps a careful eye on Sadie, reaching one hand out to her through the crib rails, sharing a special secret sister language with this inanimate object. It’s truly the sweetest thing.
Still, I know I don’t have the luxury of just sitting around lamenting how like Moses I am (soooo like him, you guys). So I have to continue to be strong, to be brave, to be “apt” at this special needs parenting gig I landed without auditioning. I just hope I can figure out how to do it, because it’s really freaking hard.