I've tried to begin this post at least a dozen times in my head. But things are messy in there these days, crowded. Good crowded--like when you have all the people you love in the same room--good, really good. But crowded.
I feel like we've been to a bajillion doctors appointments since the RSV shock. In reality, it's only been four (that's close to a bajallion, right?). The good news is the Synagis soundly fought off the RSV from Mac's little lungs. The virus hit his nose and ears hard, but created just a few days of a superficial, nasty cough in his chest and poof! it was gone. I guess those painful liquid gold injections of Synagis McKay puts up with and we fight with the insurance over six months out of the year proved their worth.
I couldn't be more grateful for us or more incensed for others that this medicine isn't available to every baby. As I watch my friends' and neighbors' tiny babes hospitalized by the dozen and then watch them bring those children home to deal with the asthma and weakened systems that often haunt these kids for years to come, I can feel myself screaming on the inside.
There is something terribly wrong about having the means to prevent the ravages of RSV for every single little one out there, but setting up a system where only the sickest of the sick can get it and if even if they can, they must pay anywhere from $2700 (what we paid last season) to up and over $4600 (what we paid for last month's shot) to get it. If you have to turn this political--and maybe that's the problem to begin with, I guess you'd call me a socialist, a bleeding heart, or heaven-forbid a liberal, but it's just wrong, isn't it?
We are fortunate to be covered by a plan that has been more than fair to us and employment that has been consistent, but many are not. Not because they don't want to participate, but because they are shut out. Too sick for insurance. Which means too sick for healthcare. Insurance is NOT healthcare. The system is BROKEN. And it's never anyone's problem until it's your mom, your spouse, your kid or yourself who becomes the poster-child for arbitrary, inhumane decisions in the name of fiscal responsibility. What about social responsibility? Ethical responsibility? Plain decency? I'm done.
RSV scare averted, McKay moved on to more mystery and excitement. At his ENT follow-up, post tube surgery, we discovered McKay's hearing loss may be more profound and more permanent than earlier testing may have indicated. Let me be clear--he can hear something. But when sound drops below a certain level, he seems to hear nothing. That may explain his affection for the loudest, most obnoxious plastic fiascos in the house. It may also explain his perfect contentment with watching a movie on mute. My heart hurts.
Of course, the doctor is trying everything before outfitting our little man with hearing aids. We're on another round of eardrops to make sure there is absolutely no residual swelling from either the tube surgery or the RSV that promptly followed. Apparently that could throw off the tests or impede his ears from responding as they should. But the suspicion and the irony is that the ENT thinks McKay may be the recipient of a rare side effect known to be associated with one of the strong antibiotics he was given following his second surgery. Keep him alive or chance a long shot at hearing loss? Of course, there is no choice.
At the end of the month we'll go back. He'll be tested again. And I'll beg, plead, make-a-deal with God for a different result.
I've had a week to process the prospect of a kid with additional needs. Needs that would require me to learn new skills, enter into a new world of learning about ears and hearing loss and what that means today, tomorrow, long term. I've had a week to think about what he can and can't hear. All the games of patty cake. All the gonna-getcha chases with me clapping my hands at his heels. He squeals and laughs and hears at least well enough to act just as you'd expect. But then there are all the lullabies. All the whispers of, "I love you," and "I know, I know, everything is going to be okay." Did he hear that? I really need him to be able to hear that.
Now, after a week, I realize most of my worries have been just that--worries about me. I have centered on what I need. What I want for him. What I think is fair. Yes, I am selfish.
But I'm ready today, finally, (I think), to focus on what is and prepare for whatever is to be for McKay. Heart, fine. Ears, fine. A lifetime of being a complete hero in my eyes, already done.
There is still much to be determined. We feel optimistic that a few weeks from now we'll be able to chalk up the failed tests to McKay's flare for the dramatic. But until then we'll start to learn and prepare and make the best of what is. I think I need to teach him the sign for Rockstar--because he is definitely that.
Most importantly, I feel assured that whatever he can't hear us say, he will feel. And feeling your way through life is really the best way to navigate after all.
McKay's ear tubes and echo went so well that we packed up that very night and drove down to Southern Utah for the weekend. I love running the annual half marathon every January and McKay seemed as right as rain so we hit the road.
All the stress of the week paid off as I ran and ran and ran my way to my best half marathon time yet--a 1:45! They even had photographers out on the trail this year to capture the journey for me. They obviously used a high speed camera to capture such a crisp image of my wind-like motion :).
