Walking Forward

My day started as usual. Waking up as my husband made his way to his summer job. Reed works a second job during the summer in order to make ends meet. Well, actually making ends meet is a bit optimistic. More like trying his best to lessen the ever widening gap between what we have and what we need.

I make my way to Parker’s safe room. With a trach, vent, and the need for oxygen 24/7, one of us always has to bunk down next to our littlest guy. With a kid like Parker, we can’t take the luxury of both of us sleeping in the same bed. One of us has to be nearby to hear the alarms if Parker goes into respiratory distress.

Today should be a good day though. We are scheduled for a nurse. . A rare occurrence indeed. And I plan on taking advantage of it.

As I lace up my walking shoes, I reflect back to before I became the Mom of a medically fragile child with special needs. Gone are the one hour intense workout sessions. I have to squeeze some time in now and again later to get my exercise in. Later usually being 10:00 p.m. or so.

The experts are now saying daily exercise is cumulative. I hope that’s true. I’m still carrying around three years worth of 24 hour PICU vigils. Each minute spent wondering if my kid was going to make it out.

Alive.

Stress does miserable things to a girl’s body.

On my way out of my neighborhood I pass by a house that at one time was as familiar as my own. My late, great, best friend’s house. The friend I thought I would grow old with. Each of us taking turns sitting on the other’s front porch dressed in flamboyant shades of purple and red…. not giving a care to what the world thought of either one of us.

I’ve since learned that having a child with special needs brings with it not only change, but insight. You learn who your friends are. They aren’t the people who suddenly start avoiding your phone calls and leaving your emails unanswered. They certainly aren’t the ones that, during a particularly grueling recovery from surgery, suggest your life would be much better if you just let your child ‘go’.

Especially when you instinctively know this suggestion would never have been made had your child not been born with Down syndrome.

I tried to understand what this total stranger who used to be my friend was thinking. Slowly I realized that my once friend simply wasn’t equipped with the tools necessary to see past the extra chromosome, ostomy bags, tubes and wires to the beauty that was staring her straight in the face. I resolved right then to surround myself only with those who could embrace both me and my son.

Yeah, it’s been rough. But our family is stronger for it. My kids are comfortable with other kids no matter their differences. Reed and I have grown even closer. If I could go back in time, and knowing what I know now, be given the chance to do it all over again, I would. In a heartbeat. Parker is more than worth it all.

We may not have found the easy. But we have found the joy.

Tammy and Parker also hang out at their other blog: Praying For Parker

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