A New Friend

Yesterday, I was blessed with the presence of a Freedom Fighter of sorts. A woman who along with her 13 year old son choose to become involved with this disease we call ALS.. She and her son championed their first 5k run to raise awareness and of course cash. Without meeting me, they had a sign with my name on it along the course route.
Yes indeed, I tell you. She brought me t-shirts and my very own sign. We talked like old friends for hours. This one is a good woman!
It is so rare to find a relationship that develops into a lasting friendship, put a terminal illness into the mix and the rarity increases. She brought herself in willingly and puts herself out others unselfishly. I find it amazing that she has befriended so many people living with ALS (PALS) and still continues too. She has lost many short lived friendships in a fraction of time, but I can tell you she is genuine pure love.
Amazing........
So to my new friend, thank you for seeking me out and making a point to know me. I too feel as though we were "just catching up" yesterday.
The universe is better because your in it.
B & L
T

My Soul Aches.....

Last night was by far one of the hardest moments of my life to date. My 7 year old, very wize and beautiful daughter clung to me in desparation as she told me she knew I would be dead long before she was ready for me to go. "What am I going to do Mommy?" She cried and cried.......
"I want to die with you, so we don't have to be apart." I tried my best to remain calm as hot tears burned their way down my face. She wiped away my wet cheeks. I rubbed her back until she fell asleep, then quietly when into my bathroom, closed the door and cried an ocean. I called Rodney, he soothed my mind and reassured me he would do everything to ease his children's pain. His voice calm and steady, he reminded me how lucky we are that I have survived this horrible disease this long and my fight is far from over.
I needed to hear that. Lately, I have been feeling very out of sorts.
Our house hunting adventure is being postponed. We have decided that we need to sell our house first. We found the perfect location and community to build exactly what we want and need. So we do some minor repairs and put this home on the market.
With that, we are planning a spectacular summer.
So more soon......
B & L
T

Not enough time...

I can't believe it is already April. Thursday the 5th is the 5 year anniversary of my mothers death. Oddly enough, the saddness that has engulfed me in years past has eased. While her loss remains a constant in my heart, I have finally accepted and appreciate what her life meant to me. The last month has been an incredibly difficult period for me. My bodies decline has consumed my thoughts. I let negativity in and it took its toll again. However, with the sun shining brighter and warmer days ahead I am getting some of my energy back.
But denying the inevitable is no longer a luxury I can afford. Time is no longer a friend. I have been writing at a crazy speed the last week to get my book finished. My hands are no longer functioning well and if this book is ever going to get to an editor and hopefully a publisher then I must finish.
I am making plans for a crematorium to handle my last wishes. The purchase of 2 small urns, one for Tana the other for Jocelyn is grossing me out. If Tana gets one, then I know Joce will get crazy if she doesn't get a part of me. After all, she has told me she just wants to wrap my body in holiday paper and keep me forever after I die. When I explained in 7 year old terms, what happens to dead bodies she decided maybe she should just keep my heart in a jar. I said no to that request too. Hopefully a tiny urn with an angel or butterfly on it will suffice.
Sunday, I fell really hard. Came straight down onto my walker. My ribcage got stuck on the seat and because of these darned short legs I couldn't get off. Rodney had to witness this horrific display and ran to my aid as I couldn't breathe and finally was able to push my self off only to hit the hardwood floor. More bruises and a sore stomach that feels like I got punched 42 times.....
House hunting is planned for tomorrow. The renters are still planning on moving here..
There are so many details that need my attention, sometimes its overwhelming. One day at a time.
Enjoy today people. Gaze to the heavens an be greatful your alive, breathing and able to move freely. Love and laugh like you mean it. Stop pretending to be happy and look inside your heart and find what will make you happy then live it.
With Passover upon us..... Rejoice in what God hath made and giveth.
Blessings & Light
T