So on Allistaire’s Cat Scan on Saturday they didn’t see any tumors, however, a backed up bowel they did see – so bring on the laxatives. This morning, only about a half hour after getting all dressed and fancied up for the day, Allistaire had a blow-out diaper which extended to the crib, bedding and all her clothes. The result was a nice warm bath in the most terrifying, institutional looking bathtub room you can imagine – think One Flew Over the Cuckoo’s Nest. After the bath I wrapped Allistaire’s sweet little clean body up in about 5 blue labeled towels. I cooed to her that she was my little “baby burrito” as we always do after baths. As I was unwrapping her back in her crib and the towels were drawn back, I beheld her beauty. How can I describe the luxuriousness of her chubby legs, her mountainous belly and pot hole (belly button), her curling white blond hair, thick dark lashes over blue blue eyes and one adorable dimple on her right cheek? And I thought, after today your flesh will never be the same. There will be a tube hanging out of your chest. Then I realized, there, just inches from me, under the surface of that lovely pink skin, changes have already taken place. In one moment, the DNA of one cell changed and began a chain reaction that could bring about the end of her life. I remember when our friend Matt Pearson died in a car accident, I thought, oh what uniquely woeful pain it must be for a mother who felt the first stirring of a life, who was the first dwelling of her child’s life, to witness the destruction of that precious flesh. I know that tomorrow begins changes in Allistaire’s body that I will be able to see – first a hole, then her hair will start to flee. I will watch with my own eyes the brokenness in creation caused by that first distrust of God. A heavy question constantly circling in our immediate and extended family over the years has been, “how can a supposedly good God allow such wretchedness, such suffering?” I surely do not attempt to offer any sufficient answer. Not an answer at all, but just a wondering… if we did not experience tangibly in our own lives the pain and suffering that comes from the brokenness God tells us is a result of not putting our hope in Him, a result of sin, would we really believe Him? I know I tread on dangerous ground here bringing this topic up. But I feel it gets at the core questions of our lives right now and I ask your patience with me as I attempt to sort out these thoughts.
For now, I implore you, consider your flesh and look it over and begin giving hearty thanks for all the Lord has abundantly blessed you with. It was only less than 2 months ago that I learned I had awesome enzymes metabolizing medium chain fatty acids every day for the last 36 years. I had never given thanks to God for sustaining my flesh in this way until we learned that my little sweet nephew, Elijah’s, body can’t. (He was diagnosed with MCAD) Now I’ve begun to learn about our wondrous blood – how it carries it’s provisions and warriors all through our flesh – protecting and providing nourishment. We have much to be thankful for!
Overall it was a lovely day with Allistaire! She is REALLY into riding the bikes here. I’ll give you all a tour of our new home in the near future – once I figure out how to add pics and videos easier. As we were making yet another lap around our Unit on Allistaire’s bike, our nurse stopped by to let us know that Allistaire’s surgery to get her Hickman Catheter installed will be at 11am tomorrow, 12/13. She walked away and my heart beat hard. I know Allistaire is sick. But it has been easy to think she is sick in the same way she’s been sick plenty of times in her wee life – now we just have swanky accommodations and lot’s of extra smiling faces to help out. Last night as I walked around the hospital getting acquainted with the layout, I walked by a young couple pushing a stroller with a little baby in it – she appeared less than 6 months old. The mom pushed the stroller and the dad pulled along the IV pole with bags of yellow fluid – chemo – connecting to the baby. Somehow that yellow color and the hazmat stickers that accompany them, well it’s like you know you’re giving your child poison. A poison that is intended to kill what’s threatening to take your child’s life but that is an indiscriminant killer. So when the nurse told me the time for Allistaire’s surgery, there was yet another flood of ache at there reality we are in.
Later this afternoon, Sten came to the hospital from work and we met with one of our doctors who gave us a lot of information on what is to come. I’ll tell you more details about this in the days to come. What it all comes down to though, is you don’t have a choice. You don’t get to decide that you don’t want the drug for fear of the side effects. We submit ourselves to their knowledge and wisdom, we pray to the God who created all things and loves us and we walk ahead.
For tomorrow, please keep praying for good sleep at night, that all would go well in Allistaire’s surgery and additional bone marrow draw and for the our Chemo-Kick-Off.
Jai… left a comment this morning, but for some reason it didn’t show up! I love you my friend! we are praying… ALL the time. Thank you taking the time these past few weeks to keep up updated so much. I am praying for tomorrow.
Jai – praying now for your rest and sustainment in God’s care. I set a reminder and will be praying at 11 when she goes into surgery. Love y’all!
well, I think it’s my new morning pattern… wake up, go to the bathroom, check you blog, read it & feel like I’m right there in the room with you…hearing your ponderings, your fears, your hilarious observations, your insight and your humility cloaked in willing faith. Thank you so much for including us in this journey with you. I love being on Team Jai! 🙂 I love you all day, all night, every moment!
I’m praying for you, for your girls, for your husband and mostly for the grace to see the depths of the heart & face of God that you’re going to be ushered into… because those glimpses of God’s depth seem to only be accessible through pain & suffering and sorrow… it must be some of the reward of honest faith in suffering… to see a color of God you’ve never seen before & that many of us haven’t yet (or may never). It’s a weighty privilege… to bear grief. A weighty and severe mercy. So, I will keep praying for you that the grace outweighs the fear, moment by moment.
Sam – you warm my heart – thank you for your encouraging words. You know I love color and your point about seeing a new color of God – well you’re speaking my language sister – thank you so much!!! Also – thank you for your specific prayer that God’s grace will outweigh the fear – moment by moment
Sam – your words are beautiful.
I am a good friend for Marta and Nick. Marta told me about your story. The reason she told me was I know on some degree what you are fighting for. My mother is fight cancer right now. Oct 12 my son’s b-day and her mother’s b-day she had a tumor the size of a cantolope taken out and part of her bile. My mom has Overian Cancer. I will tell you that today she is doing well has no hair but she is back to doing pilates 3 times a week. Her chemo days are hard but then get better she has 6 more to go.Our mind’s go to a dark place no matter what you do. Just remeber HOPE is right there. The odds are beaten everyday. There is a great website that has ton of support called choosehope.com. That is what you have to do. I have added you to my prayer list and so has all of my moms support group. Keep the smile of her in your mind. I can not imange how hard it is on you as a mother of a young child but hope will keep you in right place. I know that you do not know me but we both are fighting for the same thing HOPE . YOU are great writer and that is what you need to do. Keep a writing down all your feelings some share and some tose away after you right them down. I wish you all the best. Michelle Brunner
Thanks for relaying your own story. I’m glad to hear your mom is doing well! You are right – hope is what propels one forward.
Jai-You’re so welcome. It’s my privilege to know you for so long and it’s humbling to try to offer something to you in this very real chapter, with high stakes.