Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Tuesday, March 20, 2007

Gracie Full of Grace

I know I have mentioned Gracie’s TEFRA/4 year/multitudinous concerns appointment that was this morning. I expected to feel great walking from that appointment. I planned to unload all of my concerns. I planned to have all my concerns listed in an easy to understand format. And I did. I expected to feel great as the doctor acknowledges that yes indeed, there are some definite concerns here. Yes indeed. I REALLY wanted to walk away from this doctor’s appointment with a bill of clean health, with a, “Are you crazy? Nothing going on here at all. Enjoy your life in your perfection.” The mind is tricky. I THOUGHT I wanted shared recognition of my concerns, but that isn’t what I wanted at all. I don’t want more referrals. I don’t want diagnoses. I want to play pretend and have my one true peanut be only my perfect peanut forever. Forget the braces, they aren’t for forever (are they?). Forget everything. Forget it all.

Where yesterday my soul touched new heights of joy and confidence in this path we journey, today it is dragging in muck and bitter bitter pain. This is NOT what I wanted. This is NOT what I asked for. For God’s sakes why can’t they just be HEALTHY? NORMAL?

Why me, why them? Why not someone else?

These are not my proudest moments, but to feel the proudest moments I must at some point feel these bitter moments, or I would not recognize the joy in those proud moments for what they truly are. They are respite from daily pain and trials. They are gifts. Gifts. Yes. Gifts.

So what did our beautiful and talented pediatrician recommend? I’m certain you are curious, as was I, although I expected at least one referral. She recommended we continue our physical and occupational therapy. She also gave us a neurological referral (expected) and recommended that Gracie go to the Norian (sp?) clinic in the cities. Also, she recommended a neuropsychological evaluation. She believes we should bring Gracie to the Mayo clinic (along with Sandis for a reevaluation) in Rochester for a 4-day thorough evaluation by developmental pediatricians, neurologists, and clinical psychologists. Four days. She recommended we bring Sandis as well as we will already be there and as it has already been established that he has an autism spectrum disorder. He would only benefit from what was learned there in regards to his strengths and weaknesses.

Neurologist in the cities. Mayo Clinic some 2 hours away for four days. This can’t be real.

I want to sob. Returning to work, dealing with people, acting as though my life doesn’t feel as though it is coming apart at its very hinges. As though my ground does not feel as though it is falling from beneath my feet. As though everything is not how it is. Sometimes I despair that things will ever be different. But I need only read yesterday’s post to know that it won’t always be this way. We are just on a new journey, and this journey is not Sandis’s.

This journey is my peanut’s. My Gracie. Full of Grace.

6 comments:

Kelsey said...

Hi Sarah,

I mentioned your blog to my mom yesterday. I used you and your family as an example of grace and strength through adversity. I've been following your blog and been truly inspired by your positive attitude and faith.

I'm also a genuinely upbeat, look on the bright side kind of person, but something being "up" can be hard. I think you've struck a good balance between sorrow and joy, frustration and faith.

You are definitely on the right track for getting your kids all the help and support they need. They're so lucky to have you as a mom.

God bless,
Kelsey

Lyrehca said...

I too have thought of your blog like Kelsey, in that you're a mom dealing with multiple health issues in your kids and rather than bemoan it, you seem to take real action and get things done. Ditto about finding the right balance between sorry and joy, frustration (again, dittoing Kelsey). Good luck with this next step in the process.

Lora said...

You are such a great.......no, Fantastic Mom. I truly admire your strength and perseverance, you are an inspiration to all of us!

Minnesota Nice said...

Ditto all above me.
One of the reasons why I keep a gratitude journal is to remind me that difficult phases will smooth out.
Why would you have to take the kids to Mayo? Surely they must have those type of specialists here in the Cities.

Sometimes dr's don't look at the practical logistics of the situation.

K.C.'s Blog said...

You are such an awesome Mommy. Sandis and Gracie are so lucky to have you for their Mommy.
You are right there making sure they get the services they need:)
You all are always in our thoughts and prayers:)

Amberthyme said...

Oh, Sarah, my heart aches for you. I know you'll get through it but I feel sad for your grey moment.