Sunday, May 27, 2012
Happy Birthday, sweetie! Today, you turn 3. Today at church, we celebrated Memorial Day. Gosh, it was such a confusing, time. There we were, in our awesome I REFUSE Epidermolysis Bullosa t-shirts, handing out the amazing cards, both made by Christie Zink, telling your story to friends and new acquaintances. One wonderful church member walked up to me with a donation check! She didn't know it was your birthday. She saw my other t-shirt a few weeks ago... the one with your big happy picture splashed across the front of it... and got inspired and read our blog. That was really neat.
Tomorrow is Memorial Day, where we remember those who have laid down their life for our freedom. It is a very special day. Every Sunday, we remember Jesus, who laid down his life for our spiritual freedom. Today, we remember you, who laid down your life for all other EB kids after you. Words of remembrance and sacrifice and love were brought up today repeatedly, and I couldn't help but think about you the whole time. I felt like I was attending your memorial service in a way. It makes sense; at the memorials we held for you, your mommy and I essentially hosted and ran them, and so we really didn't have 'the space' to break down and mourn your loss. Well, today, sitting in that pew, wearing black, I felt like I finally had a chance to attend your memorial. I cried. A lot. Our friends reached over and held us. We had a guest violinist play two amazing pieces with our music director accompanying on the piano. They were also called Remembrance, and Sacrifice (from Schindler's List). The music was so pretty. I let the different speakers' words, and the wonderful music wash over me, and minister to me.
How are you?
I wonder what you'd be like at 3. Funny, energetic, full of life. Would your EB have progressed yet? Would you ever have learned to walk? I have a hard time visualizing you... do I imagine you at 3 post BMT or as if it never happened? I'm confused. I also have a hard time visualizing you at 3 because it feels like you were never supposed to be 3 this lifetime around. It just feels like you came, did your job, fulfilled your purpose, and headed back home. I know you understand what I mean. It's as if you are so much older and wiser.
I think the worst part is that you have been gone officially longer than you were here, and that time will continue to rip me further and further away from the moments where you were alive, not just laying in a hospital bed sedated. My memories of you that are not videos and photos are fading away. Oh, how I hate that. It's such an awful feeling, I mostly try to ignore it. I feel like a bad father, and a bad daddy.
I know that you can see what we are up to down here, and I hope that the butterfly garden Ali and mommy made for you yesterday made you smile. It sure made me smile when I saw it this morning. Ali loves you so much; I'm so proud of how well she still holds so much of you in her life and in her heart. She shared about her t-shirt in her children's worship and wonder class this morning, and when the other kids found out she was walking to raise money for a cure for EB next month, they all pledged to help her by bringing in some of their allowance money next weekend. It was adorable hearing that these little ones are learning the value of stewardship in a real, meaningful way at such a young age.
Tomorrow, I'm playing the Star Spangled Banner on guitar, along with a soloist and a vocal quartet for a Memorial Day service here. It's the first time I've played that piece on guitar, and it's the first time I think I've participated in a Memorial Day service. I am humbled, and nervous. I hope we do the day and the service the justice it deserves. If you're not busy, will you come hang out and make me and my fingers calm and precise? That would be great!
Anyhow, life is good here. We are blessed with good friends, family, and a faith community that is just beyond wonderful. We had a wonderful BBQ lunch with two other church families today, and it helped us tremendously to be with friends on such an emotionally intense day. There was a ton of laughter, music, great food, and sweet tenderness.
I miss you, honey, but I'm glad you are in heaven. There's a lot of work for us to still do down here, but we're making amazing progress in treatment and fundraising so every kid that's come along since you with EB genuinely has a better shot than you did. You laid down your life for others, so the docs could learn than busulfan can't be used in kids with EB. What a difference that knowledge is making. You did your part as a soldier in the war on EB, and we honor your life and service on this your birthday by saying that we are making good on our promise that the doctors have the resources they need to keep this research going so that one day, there are various treatments for EB, and nobody has to die from it again.
With this challenge grant, if we can reach the full amount of $450,000, that will double to $900,000 in research funding. If you add that to the the roughly $200,000+ they've received in the past year and a half, that will take us over the $1.1 million mark, which will be $50,000 more than Dr. Tolar first asked for when we asked him what he needed after you died. I feel like if we can hit that mark, we will have made good on our promise. I know that I will feel complete, and won't need to 'fight EB' on your behalf anymore. Help me stay the course the rest of this calendar year, since the challenge grant goes away on Jan. 1, 2013. I've been really struggling lately as you know, and I need my best self in gear in order to accomplish this goal. Thanks for being by my side no matter what the outcome, for I know all we can really do is our best, and leave the results up to God.
I love you sweetie. Thank you for choosing us to be your parents. Happy Birthday, you may be gone, but you are not forgotten.