Thursday, November 16, 2006

When you start to take life for granted...

Awhile back I posted a link to a website of an infant boy and the details of his fight with cancer. Jaymun and his family still need our prayers and continue to journey through this scary, difficult path down the road toward what they hope will end in a miracle.
I have continued to follow Jaymun's updates written by his mom, Jennifer in the journals at After reading this post, I encourage you to stop by their website and sign their guestbook. How simple, yet meaningful it would be to leave a short note for their family telling them you are thinking of them. I know it would mean a lot to their family.
As I have done since the beginning of the month, I have tried to be conscious and aware of the things I am grateful for in my ordinary life, every single day. Today when I opened my eyes and Ava was climbing up onto my bed, I savored the warmth of my home, the smile and twinkle in Ava's eyes, and the feeling of restfulness that greeted me. I realized how much I absolutely LOVE to wake up in the comforts of my own home, knowing that my children are warm and comfortable and have another day to appreciate and explore.
My thoughts then turned to the Kaat family, and the challenges that greet them each morning. My heart aches for them and this disease that so suddenly and dramatically started calling the 'shots in their lives', both literally and figuratively speaking. I have been where they are- to a certain extent. I understand and can recall some of what they are facing each day, and trust me, it's not easy, glamorous or fun.
Yet, I am encouraged and challenged as I read the journal entries each week. God is giving them all strength and somehow working out all the details of their tumultulous days. I know they appreciate our prayers and care.
I asked Jennifer if I could use some of her words here on Nitty.Gritty. This morning I went back and copied her journal entry from Novemeber 7th. I think it is something that will put life into perspective for some of us, will encourage others, and will certainly make us all appreciate the life we have at this moment. I have said it and lived through it...but sometimes even I like hearing it from another point of view.
So, today I give you another perspective...and I hope it makes you grateful for your own comforts and health. I thank God today, for the goodness I enjoy, and I ask for a miracle in the life of little Jaymun.

Nov. 7, 2006~Now I Lay Me Down to Sleep [by Jennifer Kaat]

One of my greatest pleasures as a mother is being able to partake in that age old ritual of tucking my children into bed at night. There is nothing more satisfying than cozying up with them in a chair and reading them a story (or two, depending on the amount of begging!). I love the sensation of being able to caress their freshly washed hair and snuggle their little flannel pajama bodies close as we read together. I like their giggles when we get to the funny parts and their rapt attention as the story unfolds. Their delight in a comforting bedtime ritual is a satisfying ending to a long day. And being able to tuck the warm blankets around them and listen to their little prayers is about as nice of a reward that a parent can hope to receive this side of heaven.

It's also the time of day when their hearts seem to be most open to sharing their deepest feelings. Usually they share their anticipation about the coming day, whether it's a field trip or wearing a brand new shirt or having their favorite hot lunch meal at school. I think it's interesting that children seem to always be looking forward, whereas we adults revel in looking to the past for our happy memories. Sometimes, along with the excitement of things to come, they share their fears and worries. Perhaps it's because they feel their most vulnerable as darkness sets in and they know that they will soon be drifting off to sleep.

Obviously, Ben and Kirsten are at the age where praying out loud with their mom at bedtime is considered "childish". But Sean and Devon are at that perfect age, the time of childhood that is just ripe for wanting Mom and Dad's attention--and I know all too well that this time flies by ever so quickly and ends long before I'm ready. The topmost prayer request is always Jaymun's recovery. Always. Devon is very focused on making sure God knows he's quite serious about Jaymun getting better. He has a beautiful and sincere faith that God is looking out for his baby brother. But the tricky thing about faith is that the essence of it involves trusting without seeing.

Devon had just finished praying for Jaymun one night. He looked up at me with those big blue eyes and said softly, "Mom? I don't understand--I pray all the time for Jaymun to get better. I prayed before he was born to be healthy, and he was healthy except for the cancer. But if I'm praying so much for Jaymun,why doesn't God just make the cancer go away? Why did he get born with this leukemia?"

And this little boy of ours who seems wise way beyond his seven years, is looking to me for answers that I don't have. I ask myself the very same questions every day of Jaymun's life. The chances of a baby being born with congenital leukemia are so microscopic it's staggering. We are told that Jaymun is only the third baby in Wisconsin ever to be born with AML. What were the chances that such a thing would ever happen to us? The odds of it just blow our minds away. Our Devon is trying to wrap his young mind around the complexities of that which we adults cannot even fathom. I refuse to even slightly crush his faith in the power of prayer. But at the same time, there is that very real, very sobering reality that Jaymun's life is not in our hands. How do I as a mother balance those two worlds and explain all of this to a boy who trusts that life is mostly full of goodness and light?

The answer is--gently, ever so gently. I give you the following bedtime conversation, as best I can recall it:

"Devon, this is probably pretty confusing to you, isn't it?" I started. "But you know what? It's confusing to me too and I'm a grownup! Let's think about all of this for a bit, okay? Let's really talk about it and try to figure out what might be going on up in heaven."

At which point he giggled and settled back to see where his goofy mom was taking this conversation. I knew the point had to be simple, yet profound. And so I began.

"Alright, here's what I think," I said. "I think God knew that Jaymun was going to be born with cancer-"

"Because He knows everything!" Devon added solemnly.

"Right. He already knew before Jaymun was born that he would have this terrible cancer in his blood." I said. "And He knew that Jaymun was going to need a lot of help. He knew that Jaymun was going to have to be really strong to fight the cancer. He knew that Jaymun would need a family that could love him and take super good care of him because he would be sick for a very long time. And He knew that Jaymun would have to have a bone marrow transplant and that meant he would need someone in his family to be a perfect match. And I'm sure that God knew that Jaymun would need a big brother who would remember to pray every day for him, because a lot of people might forget to do that when they got busy. And God knew Jaymun would need a big family around him to keep him really happy so he wouldn't think too much about being so sick. And so what do you suppose God thought when He looked down from heaven and tried to figure out the very best family to send Jaymun to?"

Devon sat up straight and his eyes were enormous. You could see the lightbulb in his brain just popping away. He laughed that carefree laugh of his, the one we all adore so much, and bursted out, "I know, Mom! I know! Now I get it! God picked our family out because we were the best ones to take care of Jaymun! 'Cuz I'm the perfect match for his bone marrow and I never forget to pray for him. And we make him laugh and smile all the time. And you're a mom that knows how to take care of sick kids. And Jaymun was twelve pounds so that he could be tough enough to fight cancer. That's why we got a baby with leukemia!"

I understand that maybe God has His own reasons for all of this happening to our family. But so far, He hasn't let me in on them. Jaymun didn't come with an instruction manual on how to make decisions concerning his cancer (and don't think I'm not slightly annoyed with that oversight!). I don't want to be presumptuous in trying to read God's mind, but I have some little critters that need constant reassurance that their baby brother is in good hands. And this is the only conclusion I've come to so far: God knows our family and He loves Jaymun. If He has entrusted us to take care of this adorable little guy--even when we feel completely overwhelmed and severely incompetent at best--then for as long as we have Jaymun, we plan to make every day of his a happy one.

An upcoming bone marrow transplant and our family being blessed with a baby who just happens to have cancer.....

In both cases, we've got a perfect match.


Jennifer McNeely said...

Oh gosh - tears - and lots of them. Thanks for sharing - sounds like a wonderful person. I am going to her website right now to, I'm sure, cry some more.

Anonymous said...

Thank you

Anonymous said...

I never stop learning things about my own family and life. Thank you.


Lisa Tanner said...

Wow Jody! As a 'cancer mother' you'd think I'd heard them all! But what a wonderful post! I'm going to their site now to check it out and let them know they are all in my prayers! I love that my fellow cancer moms put themselves out there for others to know! And I'm glad you shared it with us!

Anonymous said...

I just went to their site to let them know that I was praying for them. It must be really difficult to have to face something like this. It really is very sad and makes you grateful all at the same time. I pray that God will give them the miracle that they desire most in their hearts.

Anonymous said...

WOW!!! That is some heavy stuff! Makes you stop and think about the stuff that makes you think you have it bad...a car that might not work so well, a job where you feel stuck or people there have stinky attitudes or LIFE (from your point of view) hasn't dealt you what you expected. What a mom and little boy! Such profound stuff!

Brown English Muffin said...

I started to look at the website but as I saw the pictures and I looked into his eyes I started to cry...I wanted to run and hold my dd.

I realized how fortunate I was and how much I took for granted.

I will have to go back later when I'm at home and I cry out loud.

I can still see his eyes in my head.

Jen said...

The tears are falling freely now! Thank you so much for the link, and for the excerpt from Jennifer's blog. She is a very special woman and I feel very humbled by her wisdom. Thank you and God Bless.

Heather said...

When you first posted about this family in your blog I visited their site and was promptly "hooked". I check in on them every day and have been praying and rooting for Jaymun's recovery. It is a heartbreaking road this family travels, but their faith and love is so overwhelming. Thanks for posting about them again. And, thanks for stopping by my blog the other day!!