Living in the world of pediatric cancer is both a blessing and a curse.
We have come to know and love so many families and children who are enduring the awfulness of chemo and relentless sickness. We have befriended kids on the 10th floor at OU Med Center, and many more through the miracle of the Internet and blogging. It is truly amazing how technology can bring you together with people you may have otherwise never known a thing about.
We’ve traveled to places to see people and kids we met through our blog. We routinely have people walk up to us and ask “is that Abby?” or “aren’t you guys the Riggs family?” And not just here locally. We’ve had that happen all over in places like Indiana, Florida and Texas. It’s inspiring how many lives can be touched by one little girl.
We’ve built friendships and connections with so many families both through adoption circles, and the “cancer club”. Like all things in life, similar struggles bring people together in a group of mutual understanding. The tiring dance of drugs. The hospitalizations. Endless doctor and clinic appointments. Hours of combing through medical bills and insurance papers. Throwing up. Hair loss. Surgeries. Brushes with death. It’s not the stuff of casual chit-chatting or light-hearted blogging about what the kids ate at McDonalds after the matinee on Saturday.
Oh, don’t get me wrong. I’m not putting down the normal, boring or trivial as somehow how less honorable than talking about port infections and blood toxins. I wouldn't wish this on anyone. We LONG for boring, we crave mundane and routine.
When normal is gone, you realize just how important uneventful really is… how’s the weather? What did your kids eat for breakfast? How long has your little girl been in school? Where’d you buy those cute shoes? How was his first soccer game? I’ll take those questions any day over “what’s his blood counts?”, “do they expect you to live?”, “when’s your next round of chemo?”, “how long have been in the hospital this time?”.
But… and there’s always a “but” isn’t there? It’s hard to imagine not having the bonds, friendships and lessons learned that have come through this cancer-fueled camaraderie. The friends, the blessings, the stories and lives of so many children we’ve come to love and adore… bald, skinny, sick, puking all over the place, it doesn’t matter. It’s hard to quantify all the families, children and courageous battles we’ve followed and admired both in person and through blogging.
It’s hard though. It’s hard because we’ve watched so many children die and with each one we’ve wondered when/if it will be our turn. Why them, not us? When? If?
We’ve watched kids die in writing and photos. Never knew them face to face, only on blogs, as many of you know Abby. Does it hurt any less? Do you feel like you know them less or love them less because their lives are communicated to you on a computer screen? I think not. I KNOW not. I bet you don’t feel that way about Abby either. Is she less real to you because she doesn’t live down the street or go to your church? Is she less special, less human, less tangible because you know her through a broadband connection?
Sometimes I want to quit finding out about new families and getting to know more kids with cancer. We get to know them, love them, then watch them die. From one viewpoint it would seem a sad and painful circle to willingly embrace. From another, it becomes a conduit to forge bonds of love and eternal memories that could find no fruition other than the fires of shared pain and unwished for suffering. What’s the choice? “Love us, but we don’t want to pay the price to love you…” God forbid.
Watching kids suffer and die. It’s a world of clashing emotion… the love of family and friends poured out like no other time. The tears and grief of distraught moms and dads who cannot bear the death of their child but have no choice but to bear. I remember watching a little girl on the 10th floor die and her parents literally howling in anguish and hopelessness. I was at once both melted in sorrow for them, and lifted high into God’s presence thanking Him that we will never have to be engulfed in such a veil of despair. We must not ever despair like those who have no hope.
Abby has been close to death at least four times. It never gets easier.
I started rambling on about this today because of Chrissie (see the last post). I’ll never forget seeing Chrissie for the first time and instantly falling in love with her wry smile and sparkling eyes. She didn’t know me from Adam but within 5 minutes she was talking to me, flirting and capturing my heart. Masked by her infectious smiles was a body full of broken parts that would have to face the surgeon’s knife or God’s miraculous touch, whichever God’s will dictated. She died yesterday for 20 minutes as the Lord used skilled physicians to bring her back. The Great Designer has allowed his creatures to design machines than can keep a child alive. Isn’t that amazing? If not, does anything amaze you anymore?
I’ve known kids who were suffering so much, that deep down I wanted to see them pass on to God’s embrace. There have been times when I’ve been close to feeling that for Abby. If you’ve ever watched a child cry from pain while sound asleep, you know what I’m talking about. I would have never even believed that until I witnessed it personally. I hope I never have to feel that way about Abby again. I know the feeling. I don’t want to know it any better.
Chrissie is in Texas, we are in Oklahoma. I only get to feel her through a blog and photos. Thank God for blogs, cameras and the miracle of technology that lets us bond with other families allowing us to share, support and pray for them. I don’t want Abby to die. I don’t want Chrissie to die.
I don’t really even know why I’m writing this except that I’m a writer, it’s what I do. I was thinking about Chrissie today. Writing about her keeps her real to me. Writing about all of this keeps life real for me.