By  Cathy Jameson

Last week I wrote about how filling out forms for myn medically fragile son of can sometimes do a number on me.  As much as I’d like to, I can’t escape them.  They are part of life with a complicated kiddo.  I thought I’d get a little bit of a break from having to fill out forms, but a new one showed up in my mailbox after that piece was posted.  

Oh, the irony.  

Since it was a renewal form, most of the information being requested was on file and was actually filled in on several of the pages already.  If all looked correct, I’d just need to verify what was there and return the paperwork to the agency.  If anything needed to be updated, though, I could cross out the old info and add the new.  The document was lengthy.  9 pages.  Double-sided.  Font size 8.  They were asking a lot.  Because of how detailed it was, and because of how someone royally screwed up a similar document a few years ago, I didn’t want to take any chances on the renewal form.  So I made time on a quiet morning last week to go over every question with a fine-toothed comb.  Then I called the office that mailed me the form.  Asking for verification about one section, I was grateful when a representative offered to update the information with me over the phone.  Supplying the answers over the phone would satisfy the renewal process, so I agreed to do that with the rep.

I thought filling out these kinds of forms on my own was hard to do.  

Talking through each question proved to be just as difficult.  

I couldn’t use my upbeat Not Yet replies like I was able to last week.  The answers for these questions and prompts needed to be specific.  They had to be factual.  Scrubbed of any hope, I wasn’t able to say cheerfully that Ronan was so close to finally being toilet trained after all these years! I could only say, “No, he is not independent on the toilet.”  In fact, Not Yet couldn’t be used for any of the questions on any of those 9 double-sided pages.  

Can he make his own meals?  “No, he cannot make a meal on his own.”  

Can he bathe or shower on his own?  “No, he cannot bathe or shower on his own.”  

When I initiated the phone call, I really did think getting this form completed would be easier.  I thought it would be faster, too. I thought I’d save myself some of the heartache that comes with parenting a medically fragile child. I was so wrong.  I had no opportunities to be positive.  No chances to share that progress is being made, even if only one tiny baby step at a time.  Every question, even if answered with a Yes, really meant No.  

Yes, my child is disabled.