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I thought I'd take the time to write a little bit about the patience that we have to demonstrate as we meander the rocky river of life with WAGR.
I knew that moving to a different state would mean re-applying for all of Miss E's services. I knew that we'd be going through an onslaught of "first" appointments in which we may or may not meet people who give a flying fig about a disease as rare as WAGR. I knew that I'd be applying for a substitute teaching license and would be basically unemployed as we met our annual deductible for our health insurance and paid the bulk of our medical costs out of pocket (Thank God for HSAs!).
I forgot, however, how much PATIENCE it takes.
I have patience with little classmates of Miss E who are trying to learn about the syndrome that their new classmate has...can I not have patience with the doctors who are treading into new territory as well?
I have patience with the social worker who exchanges pleasant conversation with me as she learns about WAGR in our home...can I not have patience with the person who sits in the office and has to take angered call after angered call from people who need their help just as much, if not more, than my family does?
I have patience with the pharmacy that knew us well because they had been in the trenches of medication after medication for blood pressure and glaucoma and constipation from chemo...can I not give a little of that patience to the new pharmacy here who never seems to have a correct co-pay total for me even months into this process? A lot of information runs through a pharmacy each day.
"Patience," I must tell myself, "You are here and teaching new people about WAGR. Someday, when they will hear the term again, they will say, 'Oh, I remember doing this for someone with WAGR before' and that will bring comfort to another family who is diving in to the rocky river for the first time.
Well, I'm down to 10 more minutes of my (estimated) wait time. Yay, I've used this time wisely! Had I closed my eyes to listen to the "tin can" music, I likely would have drifted off to sleep and missed the opportunity to talk once it was my turn.
I'm not sure if you are aware, but I try to blog often about WAGR/11p Deletion Syndrome, and share my point of view as a mother of a child with it. There are a lot of intricacies that accompany this genetic disorder, and they are worth laying out on the table so parents and guardians can discuss them with doctors, therapists, teacher, and even friends and family.
To read more of my WAGR Wednesday posts, just follow this link!
And, for the record, I just got off my call...it was 56 minutes and 43 seconds long...I had a truly nice chat with Phyllis, who was sweet as could be, and she will get my message to the worker assigned to our case...she requests 48 hours to return calls...