Thursday, July 16, 2015

Confirmation - You're Doing It Right

I wasn't thinking about an old post when I went looking for an email last night.  The email that I was looking for was from 2004 and was about a Confirmation class that I taught at our Church.  I typed "confirmation" into the search box and hoped the file I was looking for would pop up.  It didn't show up on the first try.  So I tried again.  And again.  And again hoping I still had that email.  

I never found the email that I was looking for, but another email from 2005 kept popping up in the search results.  After the fourth or fifth time seeing it highlighted, I clicked on it.  It was the email that inspired my Older. Wiser? Stronger! post. In that post, I wrote about something that one of Ronan's doctor's had said to me.  I was so nervous during that appointment.  I didn't need to be.  Turns out the doctor found me and my dedication to Ronan inspiring. 

Imagine that!  
2004.  Things were so unclear back then.  We were just learning how to navigate the medical system.  We were just learning how involved we needed to be.  We were also learning who had our back and who didn't.  Dr. H had our back.  That's why I'd sent that email about him to our family. 

(…an excerpt from that email to my family at the beginning of this journey…)
The first day of the interviewing was grueling since I was the one answering countless questions to the early intervention pediatrician, psychologist and social worker.  At the end of the medical exam and history session, an almost hour-long interview of recapping what's going on with Ronan, the medical doctor closed Ronan's folder and just sat in his seat.  He looked like Dr. Freud and I thought I was going to be nailed as that nagging Mom that I am.
The doctor kept quiet for at least another full agonizing minute before saying, "Mrs. Jameson, if you had come into any doctor's office 30 years ago, you would have been kicked out."  
I said to him, "Because no one would be able to diagnose Ronan?"  
"No," the doctor said, "…because you know too much." 
Then he looked at me and said, "If you had come to my office ten years ago and said that you think foods caused behavioral changes I would have laughed in your face."  [He had already commented on wanting more info on digestive enzymes and was impressed they worked—Ronan, at 29.5 months old finally started walking 3 days after starting enzyme and dietary intervention.] 
The doctor still looked like he was going to yell at me, and I sat pensively in my chair.  I thought I was going to get slammed since I knew he wasn't finished.
He slowly looked up at me and said, "If I was a special needs kid, I would want you for my Mom."  
I walked away from that conversation very hopeful.  I was so proud of me and that little boy who is such the sunshine in our lives. Days can be real tough, but we'll keep doing what we're doing to keep Ronan’s little world going round and round.

Thanks for helping send a prayer up for us.
Love, Cathy 

We've had countless doctor appointments since 2004.  Not all of them have been as successful or as hopeful as the one I described to my family.  Sadly, some of the providers we've seen in the past didn't have Ronan's best interest in mind.  Nor did they respect me or my husband.  Some appointments have ended rather brusquely--like the one I describe in my chapter in Autism Beyond the Spectrum.  Other appointments have been a total waste of time and leave us with more questions than answers and with more despair than hope.  

It's hard to bounce back from one of those types of appointments.  There we were ready to listen, to learn, and to do whatever we need to.  Instead, we run into a brick wall in the form of a doctor, a nurse or an administrator who would rather ignore, condescend, and deny treatment or services that Ronan needs and rightfully deserves.  

It's unfortunate that that happens.  When that happens, hope doesn't just fade away, it blows up in my face and leaves me an emotional, weepy mess.  That's because hope isn't constant.  Sometimes it slips away.  

Hope fades away when a therapy doesn't work out.  

When a doctor we've trusted leaves or retires.  

When a program that's been working wonders gets cancelled due to funding.  

Hope also fades into darkness when I'm just too tired to keep it alive.  I may be older, wiser and stronger on some days, but other days?  That's when I just feel older.  And tired.  And hopeless.  I wasn't feeling that way when I stumbled upon that email about Dr. H and his kind words last night, but I'm glad that I saw that email anyway.  I was reminded of so many things when I reread it.  

I was reminded to be confident, to be proactive, to keep hopeful, and to always speak up for Ronan. When I remember to do all of that, Ronan does well.  I do well.  It confirms that as hard as some days are, I'm doing the right thing.  It does something else.  It confirms that others, like Dr. H way back in 2004, can see that I am doing the right thing, too.  

xo, Cat  

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