Today begins the month of September, the month that those in the childhood cancer world set aside to “Go Gold” – the awareness color symbolizing the fight our children face.
Gold. It’s such a gloriously perfect color, really – it shines in the darkness and reflects the light and is still considered one of the most precious commodities on the planet – even so, are our warrior children – they shine, they reflect, and they are beyond precious.
So, we set aside this one month – for most of us, this is a whole-twelve-month-all-the-days-and-hours fight – but we set aside these few tens of days to tell others why saving the lives of the next generation should be a medical, moral, and emotional priority in our country and our world. This is the time we set aside to remember all who came before us and all those who are yet to come. Because somewhere, in some place, a life-as-they-know-it is about to shatter and one more family will pick up the color, the banner, and the armor of this fight…and then it will happen again: EVERY TWO MINUTES.
Your Dad and I cannot believe you’ve lived with cancer as a part of your life for seven whole years now. I remember when we were fighting for days and months, and now you’ve lived with it three times longer than you haven’t. And how handsome and precious you look as you laugh and say that Daddy and I look so old now.
Thursday, August 2, 2012 – less than two days after diagnosis, right after brain surgery
I know this isn’t how your “cancer anniversary” is supposed to go. We’ve always celebrated because there was no more cancer and you were with us, but this year feels different. Even though you’re very much still with us, it feels like you’ve had to fight a lot harder for it this year… and for the first time in all the seven long…you are not cancer-free and it’s sort of like a distant cloud for all of us. I’m so sorry, son. We hate this for you.
Spring 2013 – blood transfusion in clinic
And Chasey Bear, we really don’t even know what to say about all the cancer stuff this year. We know you’re even more tired of it than we are. It wasn’t supposed to be this way. The older you got, the more we were supposed to laugh at how well you were doing and how silly mom is when she worries about you. But oh, my Chase… even though this feels so wrong and heartbreaking, Dad and I are so proud of you. You know more, love deeper, feel greater, and fight harder than any other nine year old we have ever known – and we aren’t just saying that because you’re ours.
Winter 2012 – the end of radiation
These days are not easy and how I wish we were remembering a seizure from seven years ago and not one just days ago, but my sweet boy, we love you so. And even if the story of your body seems to go round and round in circles, the story of your heart – held close in the grace of God – is a climb up the tallest mountain – just going higher, greater, and more – until you stand about and beyond everything else as someone who can do the impossible. You’re more than a conqueror. So brave on, my sweet boy, and fight on, my incredible warrior. You are known.
We love you and always choose hope for you,
Mom and Dad
PS: Remember what Matt said? “Whatever may pass and whatever lies before me…let me be singing when the evening comes.”
PPS: We love you more, most, and infinity.
May 2019 – image courtesy of the Anthony Rizzo Family Foundation
Tonight, you are about to climb into bed – utterly beyond caring after days of worry. I know you saw how Chase’s hand shook when he was taking off his shoes in the hallway tonight. I know you saw it and it stopped and so you doubted yourself. I know you’re secretly really angry because the doctors aren’t listening to you and don’t know. It’s okay. Everybody wishes they could see things more clearly at times. Everybody wishes other people had the answers when they haven’t a clue. Tomorrow morning is going to come earlier than you think and it’s going to bring the answers you’ve been wanting so desperately, but they will come with a price. A big one. So sleep deep tonight. And when Darcy comes into your room in just a few hours, listen to her the first time – she knows what she saw. Oh, and for the love… put on a bra before the firemen and paramedics walk through the door – you’ll wish you had it on all day. Kiss everyone extra sweet and hug them all a little tighter when you tuck them in. Everything you know right now is going to twist and vault like a bad case of vertigo. You are about to find out that you’re both weaker and stronger than you think. And that God’s love and grace is worth it all – despite all the times you will scream and fight and hate him just a little bit for what will feel like unanswered prayer. I know Chase was the accident baby. The one who showed up despite the birth control. But I think you’ve always known in your heart that he was special. And I’ve confirmed it a thousand more times since you first thought it when you held him tight at birth. So sleep deep for these last few hours before everything changes. This isn’t your fault. It’s nothing you did or did not do. That’s not how this works. It’s okay to cry. And believe me, because it seems crazy, but joy will come when you least expect it – even as you sob. Give yourself grace and be real because it’s about to get really intense. Life is precious.
Sending you a big hug (yes, it’s not physically possible, but I’m doing it anyway) from 2019 –
Your Seven-Year-Older Self
Thursday, August 2, 2012 – In Pre-Op: the last picture ever taken of Chase without a scar
Wish: /wiSH/ noun – “a desire or hope for something to happen“
Before Chase had cancer, I saw the role of wish-granting organizations as that of giving an extra special gift to a person going through an extra horrible season. And that is a true perspective, but it’s also only a part.
For, the farther into and through the cancer journey we travel, the more I come to see wish-granting as a way to be known. The wish is often fantastic and above and beyond the every day, but the heart of it says this:
“I see you. You are known. What you are going through takes extra from you, and so here is some extra back, oh, and by the way, you’re pretty awesome and we’re only too happy to make much of your bravery in the ways that we can.”
Last week, Cal’s Angels, a local childhood cancer organization, partnered with the incredible Abt Electronics, one of the largest independent retailers of electronics and appliances, to bring Chase and his siblings just such a wish. The heart of Chase in these days is feeling his “otherness”, so we talked with him and hatched a plan to let him, the frequent receiver, the all too often powerless one, become the strong giver as he presented gifts to all of his siblings. He was thrilled to be in charge. (shocking, right?)
Chase has had a tablet of some kind in his hands (generous and given always – oh, the stories I could tell you some day…) since the time he was first diagnosed, but last week, thanks to the generosity of Abt and the heart of Cal’s, Chase was able to put brand new iPads into the hands of his siblings. And their first group text to one another was from Chase:
“I love you so much.”
The electronics are a dream (Abt and Cal’s also gave Chase an amazing iPod touch with headphones for hard hospital days where the music calms his soul), the special dinner and tour of the Abt facility was breath-taking (Chase could have spent all night in the security room watching the wall of screened footage alone), but I think the true heart of the loveliness was this:
Each of my children walked away from that night last week feeling better and more known; more secure in family and love. They were surrounded by Cal’s family, made new Abt family, and even solidified their ties with each other.
A wish is precious.
To feel known and loved is priceless.
**All our love and thanks to the Cal’s Angels family for seeing a need and meeting it, and special, incredible thanks to the Abt Electronics family for taking us in and being so awesome.**
For more information on the work of Cal’s Angels, click here.
For more information on Abt Electronics and to see their incredible facility, click here.
Be courageous. Be strong. And do everything with love.
Yesterday, I had the great honor of bring present at the dedication of a new hospital wing for all the kids with blood disorders and cancers. With these new rooms, the hospital will double their capacity for care, and it is beautiful. And it is time. Because the beautiful, timely, and terrible truth is that double the beds are needed in this place. And tucked away, in the southern corner of this seventeenth south floor is a single room. The director pointed it out in its quiet corner space, proudly gesturing as he gave the state of the art designations. This room is different. This room is completely reinforced with lead. To protect everyone from radioactivity… “for kids with thyroid cancer.” And as the group turned and moved down the hall, I hung back, faced the door, and took a picture. It might be his future and it might not (depending on the outcome of his body scan when it happens), but now I know the southern corner room and we had a second of silence together – that door and me. And it’s funny how an inanimate object can make you feel sick. In a strange way, it stands for everything that has passed and everything that could lie ahead, and it’s only fitting that a threshold becomes the symbol. A threshold coated in lead.
“If I’m radioactive, Mom, will I turn into Spider-Man?”
