Hello, friends! Are you checking in to read the second half of guest blogger, Christine Lester‘s post about why she almost missed EA TEF Awareness Month? At the end of yesterday’s post, Christine had her fingers in her ears and was singing “La La La, La La” to drown out her children’s prayers for snow. Since it wouldn’t be nice to leave her in such a precarious position, she’s going to finish the story before the give away winners are announced. Take it away, Christine!
Why I Almost Missed EA TEF Awareness Month
My Mom Wish
I am pulling rank. Here is my mom wish. I wish that the bitter cold would take a vacation. NOW! The barrage of croupy coughs is interrupting my sleep and more importantly my ability to function. I bargain that yes, it can snow but again, I have rules:
- It cannot interrupt our power as we rely heavily on our medical equipment.
- It cannot alter our ability to grab bags and run to the doctor or hospital in a moment’s notice. This includes being snowed in or preventing emergency staff from reaching us if need be. This is a MUST…even if these little doe eyed children wish to be snowed in.
- It should be noted that just because it snows it does NOT need to be so cold that my little one can’t breathe. Pretty please?
How I Celebrated EA TEF Awareness Month
This is how I celebrated Esophageal Atresia & Tracheo-Esophageal Fistula Awareness month:
- A few times a week I force myself to write 2012 on that dwindling stack of checks made payable to our favorite Children’s Hospital or specialist.
- We go through our tour of waiting rooms and patient rooms waiting for the doctors to make an appearance. They gleefully ask how our break was and if we had a happy New Year. Before they depart they hand me a stack of prescriptions for yearly test, blood draws and the names of few other specialist they think we should see.
- This week I found humor when they asked what items they should do for a blood draw and I pulled out last year’s lab form (still uncompleted) to reference. When they shot me an evil glance I reminded them that there was ‘no rush’ and they wanted it done in my ‘free time’. Frankly, 2011 did not allow us much free time for unnecessary blood work. Especially since every admission and primary appointment results in a blood draw.
- Oh and the sleep studies and appointments with even more specialist just kept getting pushed aside for more pressing issues. “What was more pressing and important?” they ask. How about GI bleed’s and not being able to eat solid food without choking or turning blue for starters.
My New Year’s Resolution
I’m going to attempt to do better today. Consider it my New Year’s Resolution. Well, that and trying to spread the word about EA TEF Awareness Month before January ends! So before the month is gone, here goes:
- For more information about EA TEF Awareness Month please visit https://www.facebook.com/events/161537773936267/ and click attend.
- Additional resources can be found on our national Bridging the Gap of EA/TEF Facebook page.
Now, I need to schedule some more appointments, fill up a few more voice mail boxes, plead for a mental health day, and order checks. Hopefully, I can complete this all before the kids invite a blizzard to our doorstep! Let me wish you all a very healthy & happy New Year and an uneventful last day of EA TEF Awareness Month.
Jolene’s note: Thanks, Christine, for so beautifully expressing what it’s like to be the parent of a child with EA/TEF. Now that my boy is grown up and on his own, I can smile about those days. But for those of you in the thick of things, including Christine and her family, you are often in my thoughts and prayers.
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