Our Life is…

On the way to school on Tuesday, my son said, “Hey Mom? What if K was normal?” I said, “Normal? What do you mean?” and he said, “You know–NORMAL–like she didn’t require so much technology hooked to her…” My immediate answer was, “Geez, N…I cannot even imagine that!” It feels like a lifetime has passed since I had two apparently “normal” children! I thought about it as we drove and eventually said, “Well, I’d probably still be working a full time job for one.” He said, “What? You used to work??” I didn’t realize he didn’t remember a time when I worked. I had a full time job prior to his birth and until he was about age 4 when things got so complicated with K. I went on, “I wouldn’t have gone back to school either.” And the conversation just tapered off…but I kept thinking about it. What WOULD be different if K was “normal”?

There is the practical stuff, of course:
* I would be working a full time job.
* I never would have gone back to school.
* We would have two incomes and a lot less financial stress.

And the experiential stuff:
* I would never have spent a night in a hospital chair or a huge portion of my life in clinic waiting rooms or waiting impatiently for my baby to get out of the operating room.
* I would have no idea what a g-tube was or how to run a feeding pump or how to check glucose or ketones or how to work an oxygen concentrator or tank.
* We would have never been in SELF Magazine or the New York Times, and I never would have given speeches in Austin and DC, because there would be no story to tell.
* I would have no idea what HHC or ABR or ACTH or KUB or AST or ALT or ARD or IEP or ST or OT or PT or LP…or a hundred other acronyms mean.
* I would know nothing about medicine or health insurance or bureaucratic red tape.
* I would never have had to spend hours on end with my heart in my throat as my baby fought through intense pain with no identifiable cause.
* I would never have experienced the extreme joy of first words or steps that have taken so long to arrive that they’ve reached MIRACLE status.
* I would never have spent a moment pondering if I could survive the loss of my child.
* I would still be totally overwhelmed by puke, because I would not have been inundated with it for the past (almost) 8 years.
* The thought of an (almost) 8 year old still in pull-ups part time would have sent me running for the hills.
* I would probably have no idea how to get around Houston. Seriously.
* I wouldn’t know how to break down/put together a wheelchair or the way it feels to push my child around in one.
* I wouldn’t know the pride of hearing my kid answer the first “Why are you in a wheelchair?” question with “Because I can’t walk a lot or I get too tired…and anyway, it is awesome! Want to see me to a wheelie?”
(and so on and so on, forever)
And the personal stuff:
* My glass would still be half-empty most of the time.
* I would be sweating the small stuff (seriously, I can’t imagine what I ever had to worry about back then..imaginary monsters under the bed?!).
* I wouldn’t know how important it is to savor the little moments or how to find a moment of Best Day Ever in the most craptastic of days.
* I would never have discovered my own voice or had a reason that made me brave enough to use it.
* I wouldn’t understand that faith doesn’t necessarily mean believing that God will change your circumstances, but often means trusting that the circumstances are in your life for a reason and believing that He will walk with you through them. Most often, God seeks to change US through our circumstances, not the other way around. There was a time I didn’t know that.
* I wouldn’t know the majority of the people who are reading this right now. SO many friends that I just can’t imagine our lives without would never have come into our lives at all if life had remained on a “normal” course…people whose friendships and support have come to mean so much to us…friends who have become like family!

Life may have been much simpler if K had been “normal”, but we would have missed out on SO much. While I never would have wished for this life, I’m so thankful that God is not limited by our wishes and whims. He sees the bigger picture and He knew exactly where He was leading us when we started down this path so many years ago. I’m thankful for all of the ways He has changed me in the past 7 years and for the ways He continues to change me today. I’m thankful for richer and deeper relationships. I’m thankful that K, with all of her challenges and medical issues, is somehow the most joyful person I have ever met. As much as I wish I could wish that she was HEALTHY and didn’t have these struggles, I can’t…because I love K, exactly as she is, and to wish away any part of her is just an impossibility. Our life with K is a beautiful, messy, joyful, hilarious life that is filled with some worries and frustrations and unknowns, but is overflowing with love and laughter and kindness and support! Our life with her is a gift that “normal” just couldn’t possibly compare to!