Circus Life

This morning I'm feeling seriously conflicted. I am finding it increasingly difficult to maintain a "normal" for my children and our family, while managing complicated medical diagnosis'. I desperately want to shield our children from becoming exhibits in the ever increasing line up of professional appointments required for their progressive development.

The challenges of maintaining a successful 'special needs' family within our society is akin to circus life. Today, we have yet another appointment for a program director to come and meet our family. Like most, this meeting requires the presence and proof of our children's physical being and discussion of their uniqueness in comparison to the general population. I am growing weary of the side show feeling of having a family with a rare and complicated medical diagnosis.  Often, I feel that our life has become a traveling exhibition with a never ending stream of professionals lining up to oogle at our most precious gifts. Some on-lookers line up to help the afflicted, some line up to advocate for them, and some line up to claim a piece of their story. The constant flow of paper work requiring my observational response is the fodder for the playbill.  Each booked event that does not require the physical attendance of our main attractions is beginning to feel like a promotional blast, building the audience up for their big reveal.

Between the constant special assessments, the piles of medical appointments, never-ending invasive physical exams, steady demand of lab work, annual IEP meetings, behavioral meetings, program meetings, pharmacy runs..... This is circus life. I know the perpetual booking of shows is required to support the performers longevity within the norms of society, but I'm ready for this circus to leave town. I mean, doesn't the bearded lady ever get handed a razor and told to take a break?

Dear God, Its me.. Owen's Mom.

I'm taking a pit stop in a parking on the way home from Owen's eye appointment. I know we'll be home soon and I can't bare to wake him from the peaceful sleep he's found... so here I sit, looking for that same peace myself.

Dear God, Today was rough. Almost every appointment is. We are tired and I am trying so hard to see this through your eyes.  I am trying so hard to see through tears.  I am trying to take in the hundreds of appointments ahead of us that will fill our future....  I am trying to find the courage to take just one more at a time. I'm trying.

How can this be the plan?  How much longer can we fight for our future? Where will I keep finding the courage to restrain my flailing child and be the face of his pain?  How can I keep encouraging Owen to be brave when it breaks my heart? I have bear hug held him nose to nose with my eyes locked with his assuring him it will be okay... we're almost done... more times than my heart can handle.  Reassuring him with a constant lie on my lips. Knowing full well in a few short minutes it will be time to take meds, in a couple more hours it will be time for meds and shots at bedtime, in a couple more days another Mayo visit, and next week regular speech/occupational/physical therapy appointments...

..we're not even close and today I am out of gas.

I don't have any other outlet for answers, only prayers.  Please God have mercy on us.  Give us what we need to keep moving forward, to always find joy and hope in tomorrow, and heal our hearts so we can to put our whole heart into the next battle. Amen.