Thursday, April 14, 2011
Well, it's a busy week in Aliland. Monday - show and tell, followed by Disneyland. Yesterday - PICTURE DAY! (Holy Cow, I can't believe it's here... I'll be saying that when she asks for the car keys soon enough, right?) Today - Book Night! They had a book drive at school this week where if you buy a book from them, you can get a second one free! In addition to the half dozen books Ali got as birthday presents, we picked up 6 more over the course of the week. Tonight, the teachers did a play based on the story, "The Mitten," and served all the families of all the kids in all the classrooms pizza, cookies, and juice. We set up picnic style out on the grass and had a blast.
The best part? The two books Ali picked today... one is a 3D book (with glasses - see photo) on sharks, and the other is on The Mysteries of the Giant Squid. This is the same girl, who on the way from our OB visit today, requested a YouTube video on my phone of a real live fashion show. I didn't know fashion shows and sea creatures could coexist in a 5 year old's mind... who knew?
On a separate note, can I just tell you how amazing the Ronald McDonald House in Minneapolis is? Yesterday, we received in the mail a box from them. In it was the most beautiful set of wind chimes with the following note:
"Time passes and we think of you often. We hope that your days are full of memories and peace. Bella will forever be in our hearts. With love from all of us, Ronald McDonald House."
Given that it arrived yesterday, and given that Bella's name in the card is inserted in a way that looks like it comes from a mail merge, we're guessing that they have an automated system for reaching out to families after their loved one dies since Monday was the 6 month mark. Having the wherewithal to know how often they want to reach out to families and to systemize it so NO ONE slips through the cracks... in addition to all they do for the people in their home RIGHT NOW... they are just amazing. I don't want you to misunderstand my comment about the mail merge thing. To me, the fact that they have thought this process out so in depth, and have been providing this level of compassion for obviously so long... it just blows me away. I spend a lot of time in the online and automated sending of letters world and I know that to have a gift as beautiful as the chimes with this card inside it means that there is so. much. thought. that goes into EVERY child and family they care for. Wow. Blows. me. away.
Thank you, RMH, for being above and beyond a class act. Today, Ang worked from home, and I left the sliding door to the deck open all afternoon so we could listen to the song from Bella's Chimes. You have no idea what a gift that was, is and will be each day we see them and hear them! Thank you.
In other news, one of the first entrepreneurs I met at Joe Polish's 25k Group meeting in Dec. who donated to our cause wrote me out of the blue today from Singapore of all places! He is there for 4 months with his family teaching at a University there. Man, that just sounds cool. Anyway, he asked me how the fundraising is going, and I my shoulders slumped. I thought about the whole campaign... I'm not presently on a linear track to hit my outlandish goal of 3 million dollars by May 21. Not even close. I am the guy - and always will be - that swings for the fences in life, because I know that every once in a while, you hit one out of the park. I just did with the music therapy conference. It wasn't the pitch I was looking for, but it was the pitch I was given, so I swung. I struggle with making these outlandish claims because of the nature of the process. A declaration isn't a statement of how, it's a statement of what. You start with the what, recruit the who, design the how, and say by when. I am really good at the what, and in some cases, I get the other pieces in place, and in this one, I haven't (yet).
(Can you totally hear my defensiveness in my initital response?)
Then, I thought about the past 6 months, and I realized we've been through one whopper of an emotional roller coaster with Bella and Julian. On top of that, the shock has worn off and the full grip of grief has taken more out of me than I hoped. Just because I understand the grief process... I thought it might spare me its full power.
Running the music therapy conference was actually really a good thing for me mentally and emotionally, because it allowed my brain to escape the pain and focus on something totally unrelated to Bella. When I was working on fundraising, it was just. so. painful, so I did what any normal person does, I avoided pain whenever possible since the grief itself was pain enough. Remember how I used to describe the electric shock quality of pain? It's different now. It has morphed for me into a couple of different arenas. There is the heavy mental fog that no amount of caffeine seems to be able to cut through except for maybe 2-4 hours out of each day where I just feel kind of normal. The rest of the time, I feel socked in by fog. It has a physical weight as well. I feel heavy in my own skin. My body feels tight and heavy, my shoulders are killing me, and my back has never felt tighter. Frankly, it's exhausting.
Now, imagine that being pregnant!
My wife is THE strongest person I know. Her sciatic nerve is running wild, allergies are in full blown overdrive, but she gets up every day and handles whatever comes her way. If you only interacted with her over the phone, you probably wouldn't even know she was pregnant. Always on every call... just awesome. Angelique continues to be my daily source of inspiration. I love you, honey!
Nevertheless, I continue to be grateful for it all. I know that this exact experience has blessed so many in so many unusual ways. We are all here together. Still! We need YOU now more than ever as we enter this bizarre spinning coin of emotions - excitement, joy, grief, pain, all of it. To know we are not alone... your comments help us bear the pain. Your presence has always given us strength when we needed it most.
And, by October 11, 2020, there are various treatments available for EB, and no child ever has to do from it again.