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Apr 20, 2010

Blessing And Curse

From Brent

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.


Wendi Taylor said...

I am bawling from reading this. You shared your heart with us. If anyone out there reading this didn't see Abby - and you - as real people already, they certainly do now. Unless they don't have a heart, in which case, I pray they don't leave you hurtful comments.

Mom to 9 Blessings! said...

Tears! Yet, praising God for the lives touched by your family and theirs! Praising God that a blog can bring a life around the world and bring heaven down to earth and lives to heaven!

Praising God that you share this journey with us and keep it real!

We love your family Brent and Michelle - you are always in our prayers and hearts!

Thinking of you and Chrissie's family today!

Becca Harley said...

praying and believing for Abby and Chrissie

Sabrina said...

I agree with everything you have written today. It's not always that way, which is what I like about your blog. The faith is the same even when the beliefs differ. Abby and Chrissy are more real to me because of the blog than if they lived down the street from me. If they did, I probably wouldn't know much about them because I have 3 children, one of which is in school, and the other two are at home. We don't know man of our neighbors because they're children are either teens, or grown and gone. I pray for Abby daily with my children, and will add Chrissie to my thoughts and prayers as well. I can't imagine watching one of my children go through a journey like this, and I hope and pray that it goes quickly for you and that you don't have to worry about the horrid "R" word.

purejoy said...

chrissie is as real to you as abby is to me. i'm so sorry that you've had to go on this journey, and so thankful that it has been a blessing to you amidst the pain and suffering. God is so good that way!
just wanted you to know that i'm still praying for your sweet abby and for your entire family, because cancer is such a family disease.
know you are being lifted up.
love to hear your sweet heart.

Michelle said...

Thank you for sharing such thoughts and emotions with us. I hope you had a chance to read about Olivia calling Abby "her cousin" For various reasons, Abby is more REAL to her than her own "blood-cousins."
So it means a lot that we love your family "through a blog" :)
Meeting Michelle and the kids for lunch when they came through Kansas..was such a memorable event to us that we still talk about it.
Sending Abby care packages-helps us feel like we are helping in some small way and praying for your family has truly become a family event! :)
Michelle Mann

Anonymous said...

Abby is so real to me even though I've never met her face-to-face. I watched the movie "Letters to God" and cried out (literally) for Abby. I couldn't help it, she IS real to me. I love her like she was my own sister. Thank you for writing about Chrissie! It's hard to know that your sister could die at any minute and just have to sit back and watch. I've never felt such helplessness. I love you all and continue to pray for y'all.
Mattie Patterson

Karen said...

Such a beautifully written, vulnerable post. Thanks so much for sharing. I love when the community of Christ envelopes each other. I love hearing how we suffer together, and how we pray for one another, and how we grieve together. I am so blessed to be a part of the Body of Christ, and to be 'in this' with you guys, though we have never met in person.

Nicki Zieth said...

Brent, your writings today touched a nerve with me (in a good way) I used to work supporting families who's children were born with Complex heart conditions (much like Chrissies) and as a parent of a Complex heart kid myself everything you write rings true, its both a blessing and a curse to get to know and love other families living what you live everyday, we are both inspired, scared, wounded, loved, we praise, we pray, we cry together and we just live day by day.......It was often way too close to home for me and yet I felt comfort in being with them, they gave me as much if not more than I gave them. I wouldn't take back my time with those families and the families I have met since, the bonds that join us are only something you understand when you have walked these types of path.
Thank you for saying this out "loud" you moved me to tears...Praying for Abby and darling Chrissie and all of your families.
Hugs Nicki and her Family
Queensland Austrlia

wy-not said...

God bless you. I'm a long-time follower but seldom comment. I hold Abby and your family in my prayers all the time. I had to comment today, though, because you hit the nail on the head. People ask me why I follow blogs that make me cry, that make me sad, that break my heart. You've explained it so well. These kids, these people are all tangible for me. I feel like I truly know Abby, Avalon, Brock, Chrissie, Cameo and so many others. Thanks Brent. Your column today is a keeper.

Mama D.'s Dozen said...

Keep writing for us ... keep sharing your thoughts ...

Thank you for introducing us to Chrissie. Even though I have met Abby ... seen her beautiful face ... watched her play with my children ... just as I have prayed for her, I can now pray for Chrissie and her family.

Five years ago I sat in ICU at Children's, praying over my 3 year old who was in a drug induced coma, barely clinging to life this side of heaven. Oh what I would have done to have known about the blogging world. Oh how desperately I could have used the support and prayers of those who I had not met. I had never heard of blogs (maybe they weren't even invented yet). Now ... while I "see" all of you and your critically ill children, I want to give you the love and support that I didn't have. I want to walk this journey with you, as I would have loved to have others walk with us.

I also want to keep sharing with you that MIRACLES DO HAPPEN! God is alive and well today, just as He was in Bible times. God is a God of health and healing. I have seen my son near death, and hope to never see it again. However, because I have been there, I want to walk this road with your family, and with Chrissie's family, and with other families that I meet through the miracle of the internet.

Love you all! Praying for you!

Laurel :)

Sweet Joni said...

How is dear Abby & Michelle holding up??? I so know what you are saying about internet connections too... saw Abby's photo EARLY this morning & when writing I had to change my to your :-) Prayers are still going high above the mountain top!!!

sierrasmom said...

I am good friends with a family who recently lost their 5 year old daughter to a 3 day bought with menengitis. They are a family of great faith and I am in awe of their strength,though there is never a day that goes by that their hearts are not full of great pain and sorrow. If it were to happen to one of my children I would cry in anguish and hopelessness but I know my faith would help pick up the pieces. I pray for Abby every day and I will for Chrissie too.

Marie said...

I know exactly what you are talking about. I entered the "cancer kid" blog network via my neighbor's grandson Dylan who had neuroblastoma, and a little girl called Kahlilla with the same cancer who I saw in a newspaper and there was a link to her blog. I've followed them both for over four years.

Kahlilla died last year, and I went to her funeral. I'd never even met her. But you get to know these kids by visiting their blogs every day and reading about their lives and families. I miss Kahlilla and I didn't even know her. I would feel the same if Abby died too.

Kylie and crew. said...

Best piece I have seen you powerful and from your heart. Thank you.

Kelli said...

As always, you're getting it right. Thank you for sharing your heart and loving others and understanding that we all love you back. And that it's real.

We will continue joining you all in love and prayers for Abby and Chrissie. Keep writing.

Mama D.'s Dozen said...

I wrote a blog post tonight and asked my Bloggy Friends to pray for you all tonight.

Lifting you up to Our Father in heaven.

Praying for a MIRACLE for Abby.

Laurel :)

Sandy at God Speaks Today said...

"Sometimes I want to quit finding out about new families and getting to know more kids with cancer."

I've said the same thing...being the mother of a deceased child means I get to meet and love lots of other parents in the same situation. It's so hard sometimes to be this person.

So thankful I don't have to carry the burden alone.


sarah bess said...

Abby's really been on my heart today. Thinking of and praying for her. Love to your fam and strength in Jesus.

Chef E said...

My daughter was granted a visit to Disney, and we stayed at the Give the Kids A World housing development- my fondest memory is when the king and queen came to visit, they asked Ane and Aaron what they wanted to do- I walked in the room and all four of them were jumping on the beds, lol

I also have the memory of praying for so many mothers children who might have been more ill than my own daughter at the time- tears were shed, but souls rang out...

Anonymous said...

Abby is just as "real" to me as a little boy who is close to my family and who has ALL too. Thank you for giving us the opportunity to pray for her and your family. I pray for her everyday, usually several times.