Living

I was thinking today about some more "heavy" stuff ~ like what it's like to be resonsible for life, truly responsible for someone else's life. Sometimes moment to moment. And how does that effect someone?

I know with you, Daddy & I had to vigilant, always "on" always ready ~ what was lurking behind the corner? It wasn't all roses and glory ~ as someone decided to point out to me. The irony is I was aware of it on a constant basis. Which brings me to "choices". Sure, we had the choice to not be vigilant, to become a victim or to doubt this or that. And at times, very rarely, but at times, I did doubt. Like for example, with your schooling. I was always in a hostile setting. No one got it (except save a few other nuts) which is what we were deemed. The regular public thinks of teachers as almost God-like Status, right there beside Doctors, having fallen from the sky. Again, we have choices. People go to school to become teachers and they may be truly caring, wonderful people, who "want to help" or "give back" or whatever other platitude they can come up, but the truth is, it's a choice.

They have made a choice to be a special educator, a therapist, a doctor. They can change that choice (not without consequence, but usually not life-threatening) and find another chosen profession / job.

Here's the thing. When a parent has a baby with special health needs, or medical fragility, they DO have a choice. They can walk away or they can stay. People used to say to me at times "I don't know HOW you do it" = meaning taking care of you Bryant. I would be speechless at times, like, wanting to say "What are my options MORON" What am I supposed to do? Did I CHOOSE for my son to have these life-threatening day to day health issues? Did HE choose it? No. So we "do" what we have to do because we have chosen to fight it. And you did Bryant. It was a choice for you as well. You, in my opinion, had the hard part. To get up every day with a smile and a zest for living ... but let's not get off track ~ this is about choices.

So having a child / baby who needs life-interventions on a daily, sometimes moment to moment basis, as in a tracheostomy or a g-tube ... what does that mean? That means if you make a mistake, it could cost your child his or her life. Literally. One small tiny error in judgement could cost them their life. Now some may argue that's true for all parents and I would suggest it can be, at times. But not EVERY DAY, EVERY MOMENT from the most simplest of things like eating and breathing. Sure, parents have to worry about their infant choking, but do they worry every single mealtime about aspiration or if they are making the right choice for food / calories? Do they worry on that trip to the Mall if that will be the one time their child is exposed to a deadly virus or bacteria that takes their life? Should they have just stayed home?

That happened to us. You got chicken pox somewhere. You weren't even in school at the time and no one else in the house got it! So where did it come from ???? How did we fail you? Thankfully you lived, but you suffered for months with the lingering effects until you were finally back to your old self. Same with the pneumococcal. Who knew? Where did you get that?

I had to choose your nurses, teachers, etc. School, that was a lot of fun. Due Process, Mediation, IEP meetings that went minimum of 3 hours, usually more like 6. Wondering if I was insane? Finding out I wasn't. That was the hard / sad part. Being on the SAC and other organizations it becomes clear that the real deal is with how much a parent can give and will give. We gave all and, in turn, received all from you. It was beyond worth it. You were a fighter and the Rewards were beyond description.

I look back at your life Bryant without regret. I know we made the best decisions available to us and you took them and ran with them. I suppose that's what makes it so hard and why I miss you so much. My choice and your choice was to live. For you to stay with us, to live and to just continue on. We were happy with that. So when you left, it's this open gaping wound that just cannot heal. The void is too large.

The person aforementioned said "But you were worried" as if in death I am "relieved" of worry. It is now replaced with absolute emptiness. Sure we were worried. Again, the worry was, chiefly, that you would die. But you lived, 20 years. Almost as long with me as I had without you. I was 24 when you were born so that means I had four years on the other side. So having you in my life is more than not, mathwise. I ran the numbers =D Anyway, yes, my worry was that you would die, but as you got older it changed to "what if I die first" and how you would be taken care of by anyone else. Or if Daddy and I died and left you. So either way, it was a no-win situation. There was no win coming out of that conundrum.

Anyway, that is what got me thinking about choices and life and the fragility in which we live. Most will never have such a collosal "choice" and certainly never experience the responsibility that comes with ensuring someone else's life, literally. There was no "I'll do it tomorrow" for vital signs, those were done almost every time I looked at you, watching, waiting, trying to stay one step ahead of a virus or problem. We were vigilant. And you were Valliant. That can be your name now, Bryant The Valliant. Always forgiving, always loving, always the Victor. Even in your death, I have a choice. Yet this one is so much harder Bryant. Life and living. Choices. It's so hard to do without you, which makes me pause at times and marvel at the wonder of it all. I always knew it, you were the actual driver of this whole thing. You were the one supplying us the will the fight.

Now I have to draw upon all of that. Sure, the worry is gone and it's replaced with the Horror of having to live without you. I dream of you often, the nightmares have subsided a little bit and are replaced with simple dreams ... not too remarkable. Last night I dreamedy of you when you were young, how you would stand and take steps and we would be soooooooo happy you were learning to walk. But maybe the "standing" in the dream means you took a stand. A literal stand for living. Again, I have to defer to you Bryant. And try and find the answers of life through a life well lived.

It is true that the resonsibility of keeping you alive is gone ~ ultimately we failed, at least that's how it seems at times. No matter how much we are told there was nothing we could have done, it still feels like we failed. And I don't dwell on that, you made sure of that - you chose the best possible peaceful way ~ I knew when I saw you, peace had found you, you did not suffer. Yet we suffer ~ and I try and find peace at times in the fact that I had the enormous pleasure and gift to have you in my life. To be resonsible for you. Somedays it felt like you were reponsible for me. My stabilzing bar :)

In my dreams, lately, you are happy and content ~ for that I am thankful. So many memories ~ so many happy times ~ so many right decisions. So many choices that we made together that have enriched my lfe far beyond words.

So while it may seem to some a relief or that maybe somehow it is "better" this way to them, they can't see, and probably never would be able to see the ultimate gift of life in having you. Worth the worry and all that. Worth every second of it. Bryant the Valliant. My Love Always. xo xo Mommy