Alright, this seems like a simple one, but really it is much deeper.
This week has been crazy as usual. I mentioned a few weeks ago that I had joined one of those myspace type places where I could be a part of a "friendly" network and share with them.
Through this medium, there are all types of "subgroups" for everything you can imagine, quizzes, trivia, horoscopes and group for anything and everything on your mind.
I've joined a few of them.
One of them happened to be a group, that wound up being another website entirely made up of people wanting to vent and share in regards to whatever ails them...which in my case happened to be my mother's illness.
This group allowed me to set up a page, where again there are places for journals, videos, pictures, communities, friends and profile comments.
The first night I was on Eric's laptop so I couldn't upload any pictures, and only briefly set up my account. Again this is an account where only people who you invite as friends, can view. In this case, the people on the site are all related to or have themselves, the neurological disease my mom suffered from.
I set up a brief profile with a brief explanation on how I have been affected by this illness in my family. I briefly mentioned about my mother suffering for many years and with her passing in 2006. I mentioned how my brothers and I are considered at-risk, and that therefore, my beautiful miracle is at risk. I mentioned how I pray every day for a cure.
Within seconds, I had three replies from Australia, California and Canada. The first woman from Australia is now a caretaker of her husband and they just celebrated 39 years of marriage, and how she prays he will be able to be there for more. She had never heard of this disease before her husband was diagnosed, she has two sons and two grandchildren. She says she prays also for patience and that she tries to not take it out on her husband, but sometimes it was hard.
The woman from California was just married and was diagnosed. The 25 year old woman from Canada has it and is married. Her mom passed, when this woman was 17, she was diagnosed at 19. She is in assisted living with nurses and has the most positive attitude and website, full of poems, and how to deal with life with a positive attitude. She mentions that when her husband and her have children, they will use the genetic testing on the embryo's to ensure that gene is not passed down.
The next morning I had received two more welcomes, from woman both from England who have it. One has two beautiful children under 7, the other does not have children yet.
By yesterday morning, I was shaking in my shoes. I immediately thought what did I do...I'm not just sharing with the world, my horror of this illness, but people who actually have it are emailing me. Part of me, wants to remain in a fetal position about this. Since having Matthew, and since my mom's passing other than on this blog, I have put the disease out of my mind, just trying to enjoy every moment with my son and not face possibly the black whole that might be ahead.
So when someone who has it was emailing me, I shared how wonderful it is that they CAN REACH OUT, they can type, they can email and look for resources, groups, support, friends, family, poems, websites however they need to. That - that in itself is HUGE.
I told them how my father and mother didn't have that luxury. Not only was it too late, by the time my father even got a computer, but the resources in the valley weren't what they are today. Support groups, the closest physical one was in Philadelphia two hours away. There wasn't even cell phones then, to call someone for a ride.
Someone who is being a full time caretaker, doesn't have the strength to drive two hours away, organize a bus to get there, or even organize a local support group. Especially because he was a man, he wasn't into organizing support groups. So instead, there was nothing.
To this day, my father doesn't like to be involved in forums, chatting and such because he is of the old school and doesn't 'LIKE to air his laundry" but that doesn't mean he didn't need the help or just need a hug.
My point is though, for the people of today who do have to suffer with this or any other horrendous disease, there are other options and the mindset of those are growing up with technology and support around them so it is getting easier.
And for my mother's birthday I've decided in her honor, to stay apart of this group to offer the only words and cyber hugs I can. One daughter mentioned how she was her mom's caretaker and how she would go to the nursing home and just rub her arm and sing her an Irish tune. Boy did that hit me. The last day of her life, she smiled at the end. The daughter felt relief as if her mom was then running through daisies. I shared with her how my mother hung on for 3 days due to she finally had her three children in the same room, and she wasn't going to let go, how we all sang to her.
And at the end, how I told my father "Dad, she's free!! She's healthy, she's flying over us, heading out that window going to watch the sunrise with her brother and her parents and have a beer!!! SHE'S HEALTHY!!"
Happy Birthday Mom....................I love you.
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