Today is the international day of love.
And while I do not enjoy this holiday in any form or fashion in what it is intended for, I do, however, find great meaning in celebrating showing love to one another.
In my eyes, there is no better way to show love for another person than by doing something for them. To see a need in someone's life and then fill it without asking them... that is an act of love and to me, it carries the most impact.
Anyone can buy a gift or say the right words... but put in the effort of DOING something for another human being that they need shows love in its purest sense.
Did Jesus want to be nailed to the cross?
No. In fact we was scared to do it. And he begged for reprieve.
But He did it anyway. Because He knew that it was the ultimate sacrifice of love.
Let's celebrate that today.
You all should know by now that I'm desperately trying to get more people to register as bone marrow donors. If you haven't been in the situation to desperately need a hero so you could keep your loved one around longer, I'd like to ask you to try and picture it.
You all know our story by now of trying to keep my son's grandma around to watch him grow up. (If you don't, you can read here.)
Today I have another story to share. Can you imagine have an 11 year old son, and not being able to promise him that everything will be okay? That momma will get to watch him grow up?
I don't think there is a stronger love in this world than that of a mother to her son. When Mary lost Jesus, she described it as her soul being torn.
And just imagining something separating my son and I leaves me with that same aching fear... the fear of my soul being torn.
Please read this story and considering donating. Please share this with your friends on Facebook or Twitter or via email.
Hi my name is Kris and I have an 11 year old son who is the love of my life, two dogs and a special person who lives near the Great Lakes, who will always share my heart.
On. Nov. 26, 2013 at the age of 33, I was diagnosed with Metachromatic Leukodystrophy- adult on-set, the rarest form of this disease. I had become forgetful, and was having trouble remembering things and doing things I had done well for years. I had been diagnosed with Adult ADD, so thought my medication needed adjusting. I never thought I would be told I had a genetic degenerative brain disease -one that has no cure.
I was told I was born with this -that-nothing in my life could have caused it. It seems it was destined to onset around age 15 which now explains how I went from a straight A student in a private elementary school to someone who began to struggle in high school. From onset there were periods of stability mixed in with periods of problems-depression, behavior changes, difficulty concentrating, sleeping, reasoning and the inability to problem solve. It is the periods of stability that make you falsely believe you are fine then the progressive stage begins and you realize something is really wrong.
I was referred to a great neurologist Dr. Day, who immediately did an MRI and saw the abnormalities in the white brain matter. The blood test confirming the deficiency in the enzyme -Arylsulfatase A. I learned that without enough of this enzyme,sulfatides build up in my brain and slowly cause it degenerate.
Not willing to accept nothing could be done, my mom went on a search nation wide to find me help. Through prayer and with God's help- she did-at the Children's Hospital in Pa. Dr.Maria Escolar runs the largest center for rare degenerative brain disease in the world. Though a doctor for children, lucky for me she began taking adult patients 3 years ago.
I spent a week in Pa. with Dr. Escolar and her team undergoing multiple tests.They were caring and compassionate.
At the end of the week, I was given a gift- HOPE. Dr. Escolar told me that because the MLD had only affected me cognitively, and not yet physically I have a small window of time for a Bone Marrow Transplant. I met Dr.Paul and his transplant team and I know I am in the best hands. If I have the transplant and it is successful, it will stop the disease. Though I won't gain back the abilities I have lost, I will be a functional adult -most importantly - I will get to continue to be a mom.
My only sibling, my sister is not a match, though she really wanted to be. So the donor registery is being searched to find me a match. Due to my small window of time, if you are on the registry and haven't updated your current address, please do so, so you can be found to be my match or that of someone else in need.
If you have not registered and are willing to have your cheek swabbed to see if you could be a donor for me or someone else in need, please order a free, do it your self kit online or attend a donor drive. By the way,you do not have to match a person's blood type to be their donor. I know my wonderful cousin Meg has organized a donor drive for the first weekend in Feb, at St.Mary of the Assumption Parish in Glenshaw, Pa. Thank you Meg! My sister is also organizing one in KC North-and St. Peter's too is organizing one before the end of January in Kansas City as well. Thank you everyone for helping me find a donor and to St. Charles for helping to get the word out!
I have HOPE -a small window of time that God has given me.
Let's stop making excuses and start making differences. You could be Kris's hero. You could my son's.
Again, I ask that you share this link on your social media outlets. Give the gift of life this Valentine's Day. Give the gift of hope.
And you just might get a gift in return. Follow this link to learn how to become a donor. It is as easy as swabbing the inside of your cheek. There are also some really great prizes up for grabs.
BE THE HERO
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