I have been really working on trying to get us on a budget and get out of debt, now that I have time to focus on issues like money. Louie and I just started the Dave Ramsey program and I was working on our budget this morning when I started feeling really heavy in my heart and exhausted. I figured I was getting a little depressed looking at the numbers, but it seemed more than just that.
Through the years I have learned to care less about how little or much money we have at any given moment because no matter how much we have or don’t have, Lou always finds a way to get us through. I have completely stopped worrying about money because I know if I am worried he is more worried than me, which makes us both miserable. Believe me it took me 20 years to get to this line of thinking and it wasn’t easy but I have found it is best for our relationship. Anyways after he got home from his appointment, today is his day off, I was wiped out. I felt like I had to go back to bed and it was only 11am and I still needed to show him the budget and go over our taxes which needed to be mailed today. Ugh!
I then realized it was April 15. Yes, tax day for all Americans but also the 3 month anniversary of Tiara’s passing. Ohhhh, that’s why I feel like crap and tears are running down my face right now. Consciously I wasn’t thinking about the date but my heart and soul were and they were reminding me to slow down and grieve for my baby. I go days without crying but this past weekend I did a little extra crying because the Comedy for A Cure which is hosted by the TS Alliance was dedicated in her memory on Sunday. Our entire family went to the Globe Theatre at Universal Studios for this event. We were all nervous and stressed but completely thrilled and honored at the same time. Of course I was a little more stressed than everyone else in our group because I volunteered to speak at the event. Not sure how many people were there but it was on a stage with a microphone, with bright lights in my eyes, a teleprompter which I didn’t use, and a handful of celebrities along with my TSC family. My TSC family is all the friends I met 16 years ago after Tiara was diagnosed at about the same time their children were diagnosed. They were all there to support TT and the TS Alliance.
We took a really cool converted Sprinter Van and everyone was drinking and trying to relax but I didn’t want to screw up my speech so I figured I shouldn’t drink anything before we got to the event. I have to say the venue was so cool and everything seemed perfect. As I slowly ran into all my friends and they each gave me a hug, I threatened them all as they were hugging me, “No long hugs!” I knew that I would start sobbing and fall apart if I let myself hug them too long. I knew what they were thinking. They were mourning the loss of TT but now they knew it was a possibility that one day soon their child could also die. Tiara’s passing was a reality check for our little Orange County support group as one Dad told me Sunday. It’s always in the back of your mind, but you can never imagine it ever really happening until you see it happen to someone close to you.
Well, I’m pretty sure my speech went well because I could hear people sobbing in the audience. I never looked at my cheat sheet and like the funeral, I just started talking. One thing that I did talk about was the violence. While I was preparing my speech on Saturday I asked Tabitha and Trinity what I should include since I only had 4 minutes and you know I could talk for hours. They both said, “You need to talk about the violence, Mom. You need to tell them how you feared for your life and it wasn’t safe for you to take her out in public anymore.” So even though it hurts to talk about Tiara and her violence now that she is no longer here, I did. And I think it really opened people’s eyes. Mo Collins, who has been the the MC of the event for several years came up to me later and told me she didn’t know about the violence. Larry Miller, the closing Comedian of the night, told me I did “good, really good” and he would be back next year and was now totally committed to supporting the TS Alliance. I also met several supporters who felt inspired by me speech and would continue to donate in the future. This made me beyond happy. As I said at the beginning of my speech, I was Tiara’s voice for 16 years and even though she is no longer with us, I will continue to be her voice and share her story in hopes that it will help others and bring more awareness to Tuberous Sclerosis Complex.
And now I am on to our next fundraising effort on behalf of the TS Alliance, Step Forward to Cure TSC Walkathon in Long Beach on May 16, 2015. If you would like to donate to this fundraiser or even better, be on our team and help us meet our goal of $10,000 follow this link. THANK YOU IN ADVANCE!