My Poor Tongue (Part One)

Last week during the night I was jolted awake because my tongue was sandwiched between my tightly clenched upper and lower jaws and I thought I was going to bite it off. Somehow I was able to wake Mark up and make him understand that my tongue was lodged between my teeth. Mark tried to pry my locked jaw open and finally my lower jaw gave a little so I could pull my tongue out. It’s a good thing I was wearing my upper bite splint otherwise I’m sure I would have bitten my tongue off. I was so relieved to have my tongue back in my mouth so I could go back to sleep but then my jaw locked up again and again, trapping my tongue between my teeth each time. By that point I was afraid to go back to sleep so I asked Mark to get me up and into my chair. It was only three in the morning and I knew I wouldn’t be able to sit in my chair for the rest of the night so I reluctantly got back into bed. I slept for the rest the night with my head up hoping that gravity would keep my tongue in my mouth and it worked. There was no more tongue biting that night and I was relieved but then I thought to myself ‘What’s next? What more can ALS take from me?’.

So Incredibly Grateful

I am awed by all the wonderful people in our life and I’m so incredibly grateful.

Make It Count

Ever since we found out that I was sick we try to celebrate each day as if it were our last. Our hugs are a little tighter, our dinners are a little longer and we are a little bit more patient with each other. I hope you’re able to make each day count, too.

The Power of Our Words

Last week I received an email from one of Corey’s best friends, Amanda Stoerman. During one of Amanda’s routine visits to her dermatologist she found out that she had melanoma, which can be one of the most deadly forms of skin cancer if left untreated or not caught early enough. I asked Amanda if I could share her story on my blog in hopes that her words will save someone else and she said yes.

Dear Rosemary,

I think of you and your family very often and read your blog regularly. You have such an amazing ability to capture your experience and inspire others to live a life of grace and make the most of the time we are given, which makes me want to share a story of mine with you…

I think I mentioned once when I was visiting that this past March I was diagnosed with Melanoma, which can be the most deadly form of skin cancer if left untreated or not caught early enough. Needless to say, it was a very scary time. However, because I get regular skin checks with a dermatologist, we caught it very early and they were able to cut it all out. All I have now is a decent scar on my back, check-ups every three months, and a new appreciation for sunscreen!

At first I didn’t really tell anyone (minus close family and a couple friends) about what was going on because it was scary and emotional for me to talk about. But then one day I read your blog and realized how special and important sharing experiences can be. So I made a post on Facebook sharing my story along with an impacting video of people wishing they could tell their 16-year-old selves to be more proactive with their skincare. It felt good to share my story and spread the word about proactive health and regular dermatologist visits, and many people liked and commented on the post.

However, I did not realize the real impact my story had until last week when I received a message from a Facebook acquaintance who had seen my post and because of it, scheduled a visit to the dermatologist. At his check-up he had three moles removed and one came back positive for Basal Cell Carcinoma, a form of skin cancer. He told me how he was able to catch his skin cancer early because my post prompted him to make that appointment and thanked me for taking the time to share my story. Wow! This made me realize how important it is to share our stories because we never know how it can impact others.

So Rosemary, please know that your posts and stories are doing the same thing for so many others. It’s amazing what meaningful words can do to inspire and motivate people. I’m so thankful for you. I love you and your gracious heart.

Love,

Amanda

Funny Flags

A funny thing happened while Mark, Kelly, Harrison and I were out for a walk a couple of weeks ago. We stopped by a flower garden and Kelly asked me what one of the tall purple and yellow flowers were called and I said they’re called flags. She didn’t understand what I said so I repeated it several times. She still didn’t understand me so she asked Mark to help her. After several more unsuccessful attempts they asked me to spell the word. I spelled flag and they finally guessed the correct word but looked at each other confused. They looked at the garden once again and saw some American flags sticking out of the ground so they thought I didn’t know the name of the flower so I diverted their attention to the flags. The funny thing is I never saw the American flags until they pointed them out to me. I decided it would be faster to explain when we got home where I could be in front of the Tobii that the name of the flowers were called flags also.