I think something that parents of special needs children learn very quickly is how to reject the "ideal." In fact, I believe we not only reject it, but completely remove it from the equation of our daily life. Before I became a parent, I remember being that annoying smart ass who had all these opinions and ideals as to what my kids would be like, and more importantly, how I would raise them. For example they would be perfect little angels, eat all their veggies and sleep through the night. Boy, was I out to lunch or what? Then I actually had a kid and it was a real shocker to see all those pre-conceived opinions and ideals fly out the window along with the homemade baby food, organic diapers, and over priced baby carriers. I was suddenly faced with the fact that all my book reading on pregnancy and birth and newborns was totally useless when faced with MY actual pregnancy, MY actual birth experience, and most importantly, MY actual, larger than life, red-faced, colicky, and mysterious newborn. Seriously, why isn't there an app for THAT?
I thought Nika's babyhood was tough, but of course, it was small potatoes for what, or who should I say, came along four years later.
I had all these opinions you know. Babies need to be all natural. Nothing except breastmilk should go into their pure little angel bodies. Poor Nika had to wait until she had a fever of 105 before I would be persuaded by worried grandparents to "just give her the tylenol for crying out loud!" That's not to say I didn't have any medicines for her, I did, but they mostly carried mysterious names like "gripe water" and homeopathic "cocyntal." That last one I won't ever forget because it came in the shape of a little plastic dropper which you squirted into your colicky newborn's mouth, and which my husband once mistook for eye drops. Apparently they sting like a @#$* when put on the eyeball. I remember laughing so hard I cried, but to be honest, I was a brand new mum so I was doing a lot of crying anyways. I forced Nika's pediatrician to abide to my every whim regarding vaccinations. I remember changing my mind a million times about them, pretty much as fast and as often as it takes to click and scroll through yet another article claiming to unearth the hidden and vile secrets of Big Pharma and how vaccinations will kill you and everyone you know. The less of that poison that gets into my baby, the better, was the mantra that was marching through my brain.
Then Leo happened. That picture of the medicine cabinet above? It's all his stuff, most of which he has to have DAILY. I know I've blogged about this before, but lately it's been highlighted to me by all the raging debates and hype about vaccinations, which up to this point, I have tried my hardest to steer clear of. Ok, I admit he has some homeopathy in there and some essential oils but the bulk, by far, is purely pharmaceutical by nature. In case you are wondering, Leo HAS been vaccinated, and to tell you the truth, I barely flinched when he got poked. I did however, administer the homeopathic remedy recommended against vaccine side-effects right after. What can I say? Some habits die hard. And some habits are exorcised by fire. It would be interesting to make a study which compares special needs kids to typical kids regarding medicine use and vaccinations. I wouldn't be surprised to see that most of the anti-vaxxers are parents of typical kids. This is not a judgment but an observation of the fact that parents of non-medically involved children are more often the ones who can easily reject pharmaceuticals and vaccinations. I believe this is because they are the only ones who can reject them. Because so many medically fragile children depend on medicines for their life and it wouldn't even enter their parent's minds to think otherwise.
I'm not going to go into the vaccine debate here because I have way too many dear friends on both sides of the fence and I can respect everyone's point of view to a certain extent because I used to have them too. Really. I was as all natural and tree-huggie as you get. However, having a kid like Leo changes everything. One minute in time; one seizure, one real brush with death and ideals and notions of "how it has to be," is changed forever.
Believe it or not, he is pretty low down on the medically involved scale of special needs kids.
When he was born, we thought he would need all sorts of medical interventions to stay alive. Trachs, feeding tubes, the works. That is what we thought we had to prepare for, and let me tell you, the loaded medicine cabinet seems really insignificant to all that. In fact, it seems so insignificant that all that stuff being raved about online I view in pretty much the same way. I'm just not feeling the rage y'all! As corrupt as Big Pharma may be, it also has kept my son alive through seven major surgeries and countless high risk seizures. Don't we understand how lucky we are to have access to such medical facilities and doctors? The chances of a child like Leo getting the care he needed in another country would have been slim. Everyone complains about the healthcare, but we have not had to pay a red cent for Leo's multi-million dollar surgeries. In other countries parents will fundraise for years to get the help they need for their children. Read about my feelings towards Leo's docs here.
In fact, I just made friends with the super coolest pharmacy out there and I've just been bursting at the seams with glee for days. It's somewhere in idyllic NY disguised as a humble pharmacy, when it in fact, is the undercover, bad ass, super-hero pharmacy of all pharmacies. I mean really, the main pharmacist's name is Mario. How cool is that?
So the story goes is that one of our friends who also happens to be a pedi neurologist (you've met him in the Four Year Old movie) has a friend (another fellow doc) who made it his mission to make seizure rescue meds easier and more efficient to administer; basically to find a way to avoid all that nonsense in the above photo. Needles, atomizers, vials, blechh. There is no such device available in mainstream medicine yet, and Leo's main neuro told me that even if there was it would cost families upwards and well into full figure numbers. So anyway this other doc went and discovered Mario's pharmacy and convinced, persuaded, twisted Mario's arm, probably held a puppy and/or grandmother hostage to make up an easier way to kill those seizure monsters. Kinda like pulling out a automatic rifle with optic scope instead of a bow and arrow. Well, to make a long story short one thing led to another, and now Leo is a proud owner of a super efficient, brilliantly simple and yet elegant anti-seizure weapon posing as an average joe nasal-spray bottle. It came in the mail yesterday at the sweet-sweet tune of only $60 bucks (For two of them.)
No longer do I have to tote around needles and vials, no longer do I have to worry about drawing up the right dosage with shaking hands. All I have to do is give a squirt and bob's-your-uncle, the medicine is shooting up Leo's nose in a pre-calibrated dosage slicker and faster than the most achieved booger slingin' grade schooler you've ever had the misfortune to meet. The only thing I need to worry about is that my husband won't mistake it for nasal saline when he's got a cold because of his track record you know...
It's freeing you guys, to know that I no longer need to leave a three page long instruction sheet along with a recorded video how-to for babysitters regarding the lion man seizure protocol. It's freeing to know that there is no way the school nurse or staff member can mess up in administering his rescue med now. It's freeing to think that if I'm not there, Leo can still get the help he needs easily. It's freeing to realize that three simple squirts can save us from a traumatic trip to the ER.
It's also freeing to realize that those burdensome ideals, those all or nothing expectations; those judgments upon myself and others are totally pointless and insignificant. I'm not sad to see them go.
All I can do is do my best in what each day gives to me, and that is something no plan or notion or ideal can help me with. It's enough to trust in my heart -in God- and in the smiles on my children's faces.