I sit here as Hart and I are embarking on his second intensive therapy session away from our family. First we went to The NAPA Center in Los Angeles for three weeks, now we are getting hyperbaric oxygen therapy in New Orleans for a month. As a family we are all making huge sacrifices to help make Hart function typically (this comes after his PVL diagnosis, for more on how he was diagnosed and what it means click here).
My heart is so damn heavy with the time I’m spending away from my kids: Aspen is acting out and Hayes is whiney and he doesn’t know why, not to mention my stepkids – “Hi, it’s me, Meghan – your stepmom, remember me? I didn’t leave you, I love you!” It KILLS me to spend so much time away from them – especially Hayes because I have never been able to devote the one-on-one time to him that Aspen and Hart have both gotten. Oh! The guilt!
But I digress, I’m here to touch on a much more delicate matter regarding my twin 15 month old boys, Hayes and Hart: As a mom, how do I internalize their abilities? To really boil it down I feel like I have an angel and a devil on my shoulder when looking at the other child through my mom lens. Please allow me to wordily expunge some shameful thoughts in a (likely) disorganized way.
(Throat clear before monologue commences.)
Hayes’s Mom’s (that’s me) Point of View:
My child is so advanced! Have you seen him?! Not only is he a mini tank, he carries around his baseball bat everywhere he goes. And I think he’s going to be left-handed! He might just follow in his dad’s footsteps and be the next Major League Baseball great! Yep, that’s my boy. He’s now running, walking backwards, he can eat like a haus. Did I mention how smart he is? He has ten words and getting chattier by the minute! That’s ADVANCED, my friends. He loves intently watching everyone and everything and soaks it all up like a sponge. Oh, and the drama! That child belongs on a stage! He is just so well-rounded, but damn is that boy coordinated or what?!
Hart’s Mom’s (that’s still me) Point of View:
My child is so sweet! He is incredibly social and has a megawatt smile. He will laugh at anything and everything. He’s so friendly and loves going to all of his appointments and meeting new people. He’s so good with allowing a strange doctor or therapist examine him and never cries. He’s working so hard in therapy and with each milestone he reaches he becomes so proud (and is prone to show off!). He has three or so words (this is the same as a typical kid!!) and is working hard at each one, he can even request a banana by name: “Nana!” He just started really using his pointer finger and has a great pincer grip. He only choked once (on his first birthday, what a birthday to remember!) and is really chomping on his food well now. His knees are bending more and more everyday and I think he’s SO CLOSE to standing and walking!
I really go on and on about Hart, I really get into the nitty gritty milestons that most parents of typical kids have no clue what I’m referring to (pincer grip??), almost as if I’m trying to prove “he’s really great you guys I promise.” Nowhere do I mention anything with how Hayes eats or how he points because as “Hayes’s Mom” I expect it, so it goes without mentioning. Notice I don’t talk about how sweet Hayes is, I lead with his physical prowess (because as a boy this is culturally important). I make excuses for Hart while I laugh jokingly about Hayes. And I do all of this unconsciously and with so much love for both of them. I honestly didn’t consider the glaring differences in description until this moment. I’m not imparting lessons, just reflection.
“Hayes’s Mom’s” Reaction to Hart and Hart’s Mom (removing myself from Hart):
Oh! That poor child! Oh, he has a brain injury, okay, I see… I understand, but I don’t. But I don’t need to understand and Oh! Hayes! Stop running over there! My Hayes, he’s just such a “boy!” He’s so physical, boys though – right?! Oh yeah, that Hart boy, bless his heart, oh isn’t that sweet his name is Hart too. He’s just so cute though! Gosh that poor mother, what a good mother she must be for getting him so much therapy. And I can see the way she longingly looks at my Hayes wishing her son could be that way. God, we are just so lucky. And truly we are beyond lucky because Hayes is an exceptional specimen of a human. He really is, he’s smart AND athletic. When did he walk? Oh lord I don’t know, he started running five minutes later! I don’t need to think about these things! Hart’s mom is in such a different world than me with all her son’s therapies and weird acronyms, meanwhile I’m busy, too – because I have this crazy boy to chase after! So I guess we must have the “busy” part in common! But we aren’t because, oh my, that poor child. Hopefully that Hart boy walks soon. I can see the way it just tears his mom up to look at Hayes but she needs to realize that Hayes is just so advanced! My boy is a stud and can even keep up with his big sister. Anywho, I’m grabbing coffee with the other moms – that “Hart’s Mom” lady just gives me the weird judgey eye like she’s so jealous! I mean I would be too if I were her but I’d never say that, but c’mon she needs to try to stop being so intense, it drags everyone down! We have nothing in common except our hectic lives but I’ll definitely pray for her because she has a lot on her plate. That’s probably why she’s jealous, poor thing. Oh that poor family… but such a good mom, I’ll let her judgey-ness go because I’m sure she’s going through a hard time. Yikes, she looks tired too… and thin. Well I’m sure she’s stressed, poor thing. But we all have problems. Oh Hayes, please don’t hit your sister!
“Hart’s Mom’s” reaction to watching Hayes and Hayes’s mom (removing myself from Hayes):
Ugh, another typical child, running all over the place. Yeah I get it, Hart has a brain injury, but must every child remind me of it? That Hayes kid keeps running up to me with his sweet innocent face and starring at Hart like “Why won’t you run with me?” Well, Hayes, he can’t… as Hayes promptly forgets his inquiry and runs off like a gazelle (a drunk gazelle, but he possesses much more graceful running that my robot, Hart, could possibly imagine right now). But Hart’s doing so great at therapy! Surpassing expectations! But then reality hits: I see how every other kid on planet earth just “does it” and the moms don’t think twice about it. Why can’t they see that this is not normal?! They have it so easy! God if my kid was typical do you know how much more shit I’d get done? And these moms act like they are sooooo busy. My ass. And they look at me with such pity. Hi, I’m just like you (except with a lot less free time which you will never ever EVER EVERRRR understand because you can’t imagine possibly being busier than you are. Bitch bye.). God, when did I get so pessimistic! I’m not pessimistic! Hart is doing amazing at therapy, he’s even so much better than so many other kids bless their sweet souls. And I am a good mom. These moms don’t even know what I’ve sacrificed by doing research and being Hart’s advocate, and they know they couldn’t do it, either. It takes a special person and I AM that person, damn it! But I don’t want to be that person. Oh Hart let me give you a kiss I’m so sorry for saying that I’d never change anything about you! You are just so perfect the way you are and I’d do what I’m doing a million times again! I’ll never say that I wished you were typical again! That’s right, Hart, because these moms will NEVER ever have the bond we have. We spend so much time together! And you will be so much more empathetic because of your journey. You will just be the most amazing person on the planet, way more dynamic than that Hayes kid running around like a triathlete, anyway when did being a triathlete ever even matter? It doesn’t, Hart, what matters is what’s on the inside. C’mon Hart, let’s go, I’m going to join another Facebook group and ask them about why your right leg swings out further than the left because I know they’ll have answers. And hey, maybe I’ll finish a glass of wine in front of my computer while researching if we should do HBOT or intensive PT next.
Now, let’s just reflect for a moment. I am both of the moms (literally). I don’t actually think as linearly as those trains of thought but I can easily see how I could if I didn’t have Hayes AND Hart at the same time. And both are raw, real, true, and there’s NOTHING wrong with either mother. Neither mother is a bad mother. In fact, both are exceptional mothers.
That is all. This is food for thought, that’s it. Thoughts? Experiences? (And for the small – yet loud – group of “Hart’s Moms” I also welcome commiseration. Also handed out freely: solidarity.)