It’s the start of EB Awareness Week! And it’s time to Cause The Wave! For the start of the week on EB Awareness let me fill you in to some of the comments, statements or conversations you will only hear in a household that deals with EB – specifically RDEB (Recessive Dystrophic Epidermolysis Bullosa).
In the morning:
“Hey baby good morning. How did you sleep?” - Me
“Good mom…but I was hot again & my hand hurt so I took off my wrappings. Is that okay?” -Bee
“Sure but remember you need to keep them on for a little long so we can save the web-spaced. Go take care of yourself while I prepare your Boost.” –Me
“Why are you limping to the bathroom?”-Me
“My foot is asleep mom & the heel hurts. I hanged it on the side of the bed to get the blood flowing but it didn’t work. Don’t worry once I put on my shoes they’ll feel better.” -Bee
“I hope so! Please do the hand scrub to remove all the dry skin…” –Me
Between 10-15 minutes we’re both doing our own thing…then back to her room for a once over of the bandages done the night before. This part can be quick or it can take a lot longer than expected due to open wounds healing and draining overnight.
“Bianca the bandage here drained a lot & this is stuck over here – you didn’t feel it during the night?”-Me
Blank stare…then a head nodding no – moving on…
“What happened to the bandage from our neck? Your hair is all stuck to it now! Do you want me to cut it or soak it?”-Me
“Let me see mom…soak it! Don’t cut it please…” –Bee
20 minutes later we’re out the door after an hour and a half since getting up. Pretty long time to get ready in the morning don’t you think? And this is on a good day! On days where we have a higher percentage of wounds to tend to we could be there for an extra 30-40 minutes. This makes us all late and taking almost two hours getting ready for school.
“Okay let’s move it we’re behind again…”-Me
In the car…
“Bee here’s the lip gloss & lotion for your hands, please put it on to help the dry chapped skin…”-Me
“Did you put it on?”-Me
“Yes mom! But now I can’t swipe my screen because my fingers are slippery.”-Bee
Getting to school I gather her materials and she walks in, limping, all the way to the front office. We settle, I give her another once over sometimes needing to reapply a bandage or two that has fallen. A hug, a talk and a kiss and finally she’s ready to start her school day. In between all this I have to make sure to reinforce the things she needs to accomplish for the day at school. Ask questions on assignments you don’t understand, sign up for whatever event you spoke about the night or day before you’re interested on, pay any fees due for the clubs you are a part of and most importantly pay attention in class to the new lesson to make sure you get it!
Throughout the day I often text the nurse once maybe twice if it’s an extra wounded kinda day. We keep connected, sometimes, maybe too connected. But this is what it takes to keep her whole & mainstreamed within society’s requirements. Not an easy task but we manage!
Fast forward to the afternoon when she gives me a ring at the office…
“Hi mom…I’ve been picked up!” –Bee
“Great! Everything good?” –Me
“Okay. Try to do some of your homework before I get home so we can have time for bandages.” –Me
“Sure mom I will try but can I take a break? I’m really tired?” –Bee
“Try and read if there’s anything to read for homework, okay? We need to go to bed at a decent time.” –Me
Tomorrow I’ll fill in to the evening routine which is usually what makes our days extra lengthy. In the meantime get to know what’s helping us Cause The Wave ~ they are known as the EB ResearchPartnership. Click here and "LIKE" their Facebook page to stay on top of their latest events & developments ~ EB Research Partnership Facebook. What they are doing in the name of raising awareness, funds & hope is amazing! Eddie Vedder from Pearl Jam is one of the founding members & currently he has an amazing auction going to raise so much needed funds for EB research. Go over and check out #healeb with Eddie Vedder on Crowdrise! And use those hashtags people! They really connect us with the rest of the world!
FRIENDS & FAMILY ~ For EB Awareness Week 2014 how about posting a picture of Bee (and yourself if you have it!) & hash-tagging it with #ebonourterms, #buttersbee and one of the following plus tagging her or us if you are a part of our social networks:
#HealEB #CauseTheWave #EBRP #EBWeek #EPIDERMOLYSISBULLOSA #RDEB
Let's make it a memorable awareness week!!!
|Heading Out To School!|
|First Day Of Middle School|
|Taking A Quick Breather Before |
Heading Into School