This post about Scleroderma Awareness Month was sponsored by Scleroderma as part of an Influencer Activation for Influence Central
One year ago today I was writing a similar post in recognition of Scleroderma Awareness Month. If you read that post, you would have read the brief but powerful letter written by my mother in law, Mary Lou, about her experience with Scleroderma. With a heavy heart, I need to add that she passed away this April, after 25 years of bravely dealing with this painful disease. It was not until we started going thru her affects, that we realized just how much medication she was taking and how much pain she must have felt every day. Scleroderma is an autoimmune disease with no known cause and cure. She was blessed with amazing doctors a who basically just treated her for the effects of Scleroderma the best they could and friends that helped her think of other things.
After she passed I was also surprised to find friends who had relatives who have suffered from Scleroderma. Scleroderma affects thousands of people, but majority of the world knows nothing about it. Why you ask? Well believe it or not, the disease is so rare; it only affects 1 in 906 people, with 80% of patients being female. Which is not a lot but if you realized what they were going thru you would want to help find a cure and at least the research to help them find ways to extend their quality of life.
In Mary Lou’s Memory I want to share a few paragraphs from her Eulogy, one from her sons and the other from my 14 year old daughter who was brave enough to stand up in front of hundreds of people and express her feelings about her grandmother.
From Mike and Patrick:
“Many of you have reached out to Mike and me to see if there is anything you can do to help the Long Family. First, in the spirit of my Mom, please reach out to your loved ones and have a conversation, schedule a date, walk in a park, sing, dance, hug, love. It may be hard to say things that need to be said, but do it anyway. Make time for the things that matter most and try to “outdo each other in love.” Second, if you pray for my Mom, please consider offering prayers only of “gratitude.” Mike and I were raised to believe these are the prayers heard loudest in Heaven and we know Mom is listening.”
From My daughter: “…I have that bracelet on my wrist today. The bracelet is a reminder that she is always here with me. Every special day from here on out, I will always wear the bracelet, and know she wishes she was there celebrating with me. It also symbolises that my grandmother is always with me in spirit. These pearls are a tangible memory for me. I pray and hope that everyone here has a memory that helps you remember my amazing grandma and reminds you of all the joy and love that she radiated.”
Why am I sharing these words? Mary Lou proved that there is something bigger than yourself and that is love. If you are surrounded by people and care about people, this will overcome any pain or disability you may have. You have two choices in life, to dwell on the negative or to embrace the positive and allow that to keep you going. Her grandchildren were a huge source of Mary Lou’s happiness and kept her getting up every day even if they were miles away.
WHAT I NEED FROM MY READERS: The Scleroderma Foundation, Scleroderma Research Foundation, and the Scleroderma Society of Canada are joining forces to help increase awareness for Scleroderma. During Scleroderma Awareness Month I would love if you could take just a few minutes today to sign your name in a pledge of support at http://sclerodermaaware.org/ Then please tell one more friend about the pledge!