Saturday, May 12, 2012

Bittersweet day...

The day had finally arrived, May 11th and we were about to hold the Locks Be Gone 3 event.

This CF fundraising event was started in 2009 when a friend said she'd go bald if she raised $10K by a certain day. Two years later her sister did the same thing. I thought we were done with this event, until one day I jokingly answered my friend Matt's question about whether he should keep his hair long or cut it. I replied, "Why not go bald for a CF cure?" He replied with a yes and we got the ball rolling.

The day had arrived and I knew he was nervous. He was about $1,500 shy of raising the $10K goal he had set, but he was gonna go squeaky bald anyways. He posted this on facebook just minutes before the event was to start...

"We leave here in 45 minutes and I can't deny that I have butterflies about getting my head shaved. But when I get caught up in feeling like that, I remember that this is being done for a reason and for someone we know who NEEDS our help, and then it gets better.

Here's to Andrea and her mom, Susie Rider , who tirelessly fight to raise money for cystic fibrosis research and to turn CF into "Cure Found". Thank you to everyone that has given a donation (there's still time to donate, it doesn't end tonight!), lent support via FB or just gave a thumbs up. All of you were an important part of this 5 month experience.

I can't thank you enough.

Here's one last shot of my aging mug before I get attacked by scissors. The after shot will be forthcoming once the shock has worn off.

Promise not to laugh at my giant, pale, Polish melon once it's free from the constraints of my locks."

I didn't get a chance to see this post until later in the evening. I was out the door and about to get in my car to meet Matt and his family when I get a call from him. The instant I heard his voice I knew something was wrong. He sounded shaken up, almost trembling like. He said "We have a niece just went into cardiac arrest and we're on our way to the hospital. I don't know what's going to happen." I told him to go be with his niece and sister, that was priority. I could tell he could barely talk. His wife called me soon after and explained things did not look good. I told her not to worry about the event and we'd figure something out. The event was to start at 7 p.m. by 8 p.m. I made an announcement that the event had been postponed due to this emergency. Sadly by 10 p.m. Matt sends me a message that his niece Diana had passed away.

I can't begin to express the deep sadness I felt when I read his message. I have not met Matt's sister Susan. I was looking forward to meeting her during the event. She had posted such funny things on Matt's facebook...just like a good sister, poking fun at him (lovingly). And now she's lost her child?! Yes, she was 20 but I don't care how old our kids are, they will always be our babies. All I keep thinking about is how hard Matt worked at raising all this money to help me, help my child live a longer life; how his sister supported this challenge he took on to help me...and now his niece, her daughter has died?! How very, very wrong all of this feels.

Diana had Retts Syndrome. A disease I know only from what I've been reading about since learning of her death. Actually, I looked it up a couple of years ago when I learned about her having it, but because CF consumes me so much, I'd forgotten what it was. Here I am re-learning about it because this young lady has died.

Just thinking about this mama kissing her daughter goodbye for the very last time breaks my heart. The thought of her getting things ready for her burial/cremation(?) literally makes me feel ill. I fight these feelings off and on when it comes to Andrea and her CF, but I've allowed it to consume me right now because from one mama to another I know she's in the greatest pain a parent can possibly ever feel. NO PARENT SHOULD EVER HAVE TO BURY THEIR CHILD, and yet it happens all too often. I HATE IT!!! I HATE IT!!! I HATE IT!!!

May 11th, 2012: the day we were to hold the Locks Be Gone 3 event, my 45th birthday and the day a sweet girl left this earth way, way, way too soon! Rest in peace sweet Diana...Rest. In. Peace. <3

1 comment:

  1. Thank you dear Susie, as we share much in common, our namesakes, our uncanny devotion to Matt's hippie like hair and our endless, tireless love for our beloved daughters... I barely made it out my front door, dressed and groomed to witness my youngest brother's head emerge shiny, new and glaring... I answered that phone call, beyond panicked I beat my daughter's ambulance to Methodist, I was aided by another long distance special need's MOM to ask for the Chaplin. I paced like a caged animal,praying I would see light in the eyes of my only child.Diana fought hard, she fought long, I spoke my last words to her, offering to let her go, that I knew if she needed to be with her daddy..then please go,Mommy understood, for I loved her with every cell, every breath and every tear.Her gentle way offered back her dying heart, she gave me just enough time.. to hear her tiny heart beat softly yet real.. so I could say again with truth, please go my baby, I wish for you not to suffer.. please go, run, jump, fly and talk once more with all that surrounds you.. Mommy will be fine... Mommy's are never fine when they loose their babies.. a hard cold fact.. I sincerely pray with your determination you and your daughter, find the cure to CF...for my nightmare may have ended in the flesh, Diana's absence will remain true, forever.. I am sorry I could not openly offer a hug the day of Diana's service, I needed to remain sane, before I was to read my last letter to my only child, I know you can comprehend. Soon we will met and help shave a head so you may find your peace... and that of your living daughter's. Much peace and respect, Diana's Mom Susan Strelecki...