Hi Friends,
Thanks for your patience; this week has been incredibly busy! There’s so much good stuff happening that I’m trying to be conscious of allowing it in, not questioning it, or feeling overwhelmed by it. After the year we’ve had, this is not an easy task. I’ve been waiting for the other shoe to drop more than I’ve been allowing abundance in! Yet, that is what I aim to do.
I’ll start with no news is good news on Lulu. She’s the squishiest, cutest and chubbiest she’s ever been, and a whopping 42 lbs. after this week of steroids! She’s still craving foods like a pregnant woman in her third trimester, but to see her actually eat more than a couple of bites of something is just remarkable. Her blood counts are next to nothing this week, so she is delayed for the last big-daddy round of chemo. She might need a blood transfusion or platelets this week, but that feels like a mere pause at a pedestrian crossing compared to the sadistic marathon we’ve been on. She’s feeling good, drawing rainbows and enjoying the summer! I too, love summer so much; it makes me feel like a kid again. Riding bikes, sitting on the porch, having water balloon fights in the backyard … it’s all so filled with life. Max is excited too, although he’s melancholy over leaving his elementary school. Well, he’s genuinely forlorn, actually. But how amazing to love school so much at his age that he doesn’t want it to end? I don’t recall having that same feeling … do you?
Realizing this will likely sound trivial, I must tell you that Lulu tied her own shoe for the first time. I think parents with children who are life-threateningly ill subconsciously stop looking at things like comparison charts, growth charts, and expected milestones. Every time I get one of those “Your Preschooler this Week” emails, I delete it instantly, for fear she may not meet some silly standard listed there. Before treatment begins, the doctors give you a list miles long of the physical, mental and behavioral problems that can happen due to chemotherapy. As you sign the documents declaring your understanding of the risks, you force your eyes to blur the words together on the page while holding your breath. The normal expectations just don’t matter now; all that matters is that she’s healthy. So, it took me by surprise when she tied that shoe, and how beautifully on par it was. She was giddy with delight over her accomplishment and both Daddy and Mommy were there to share in that joy with her.
Things with the rest of us have been pretty good too. After deciding not to work for these 7 months, the perfect opportunity seemed to land in my lap. I’m doing some freelance consulting, mostly from home. I could tell you more but then I’d have to shoot you, as I signed a non-disclose J. Suffice it to say, I’ve had to wake up that fat lazy hamster who’s been couch-potatoin’ it up in my brain. He didn’t get any warm-up either, just had to clear the cobwebs off his wheel and start sprinting baby! He’s hanging in there though, after a little WD-40 and some unconditional love. It’s been a little stressful, but also a welcome challenge, and I think good for Lulu to see me doing something that’s normal to her, too. Jimmy’s work has thankfully been flowing in like a raging river, and he’s using all his great stamina to keep being the rockstar he is. He’ll be travelling again very soon, which brings me to the good news that my dad is staying with us for a while! We’re busy turning our bedroom-turned-closet back into a bedroom for him so he can have his own space. We are all glad to have him here.
But wait, there’s MORE INCREDIBLE NEWS! Lulu and we were chosen to do a photo shoot for an international drug company. Apparently, quite a few caregivers from the hospital referred us to the company that makes one of the life-saving drugs Lulu is on. This was a real compliment since they wanted a family who was still (mostly) thriving during this ordeal. (We just found out the divorce rate for a family going through this is 70 percent!!!). Ironically, the ad is for Erwinase, the drug I wrote about recently that requires shots in Lu’s legs. They flew in a crew from L.A., and we did a photo shoot at the lakefront, and in our house (OMG, yes, we had to deep clean for that!) We didn’t know how the day would go with Lu weaning off the effects of the steroids, and being a wee 5 years old. Well, that little hambone tore it up! The shoot was supposed to be 3 hours for two locations and ended up being 5.5 hours! She was eating up every single minute, and you would have thought she’d been doing this for years. The crew was amazing, kind, and absolutely fell in love with our little princess, hence the extra pictures. Jimmy, Max, Grandpa and I ended up in some shots too, and had to sign releases. Lulu told me how happy she was, and that she had “awlways, AWLWAYS” wanted to do something like this. She had, in fact, been begging me to let her model before she was diagnosed, and I was considering giving in. It was wonderful to see her celebrated, bald-headed and all, in this way. Apparently, each person in each of their campaigns is given a word that describes them. The word for Lulu: “Spirited”… a perfect fit! I’ll be sure to put the ad in the blog when it comes out.
So yes, we are allowing abundance in this week, or for however long it is here. And I’m trying not to feel a sort of survivor’s guilt during this time. Our friends Kate and Bo are still struggling and we think of them every day along with others at the hospital. Kate has made huge improvements and is receiving mostly homecare now, but it’s still extremely difficult, and exhausting for her and her parents. Bo has had some setbacks, but is in line for a bone marrow transplant now and luckily only had to endure one big round of chemo to knock his counts out before being eligible. I know they’re happy when any of us are doing well, just as we are for them, so I hang on to that. We go to visit the H.O.T. unit every chance we get, and are donating the proceeds from the photo shoot to that unit. Please continue to keep all those kids in your thoughts and send them some good juju when you can.
Jimmy and I recently got to go on an impromptu afternoon date, on what was pretty much the perfect day. As we drank a mojito, ate delicious food and sat in the sun, we felt so grateful. Grateful for our family, and for you, our friends (even virtual). Grateful for the beautiful day and the love that surrounds us. Grateful for this moment in time, right here, right now. Thank you for not forgetting us, even though life is full and time has marched on. We welcome and appreciate your love … and abundance!
a.l.l of us
