Saturday, January 2, 2016 11:20 p.m.
It has been 68 days, 11 hours, 20 minutes, and 25 seconds since news of Ava's relapse. We were given way more time to carry on with normal life than the average person who relapses with cancer.
Not going to lie...I have been faltering a lot these days, just sitting in the "what if's". The statistics are not on our side and any healing without treatment would be considered a miracle in the medical world. I'm not skeptical of miracles but I am confounded at how God works and whether a miracle would be given to us.
We may be drawing closer to the fellowship of parents that we hoped we would never have to join. It is a sacred circle of families that have felt devastation and anguish in a way that we could not have imagined in our early 20's before spouses and children and love. It is the literal dying of bodies and the impossible earthly goodbyes that is happening in reverse order when young children lose their future while we, adults, continue to age and age without limit while longing to die.
Ugh, I could sit in this space for quite some time if it wasn't for the joy that bubbles up from all the living that is happening around me still. She is well. She is happy. She is laughing. She is running. She is sleeping. She is breathing. She is breathing. She is breathing.
So I give thanks with all my heart because once the thankfulness ceases, the darkness comes rushing in hungry to devour all joy, all gratitude, all hope. The bible instructs us to be joyful always because it points our eyes back to the One that is beyond time and space and is greater, far greater. When my focus is there, the other things, they lose their sting even if it is just for that sweet moment when I am lost in the wonder of His amazingness.
I want to start this new year giving thanks. So, here it is. There is much to say.
1) I am thankful for time.
These days, these moments, these seconds, they count. All of it matters and is precious, each one. I am thankful for the time to play, to bathe them, to cuddle them, to read to them, to brush their hair, to pick out their clothes, to make their dinner (in the microwave-let's be real), to pray with them, and on and on.
I can't get over the fact that we are still living as normally as possible under the present circumstances. It is tempting to pretend that it was all a bad dream and that our days right now are the real deal. She looks so healthy that I want to deny there are cancerous cells lurking in her bones. But they are there. And, yet, something is keeping them at bay. I'd like to think it is the actual hand of God holding back the storm for an undisclosed amount of time because of His grace.
This sounds so trivial but the past week I cleaned the house furiously. I went through every room, picking and sorting and packing and storing. It was therapeutic and scary all in one. Decluttering is not just a way to make more room in this small house but it is a way to physically let go of all the stuff that we think will make us happy. It's a way to pare down and realize that things are just things and will never fill this gaping hole in our hearts. It's terrifying though, when I search deeper and uncover the real reason behind all this cleaning. I think it's my way of preparing for whatever is going to come. It's like my body already knows that if Ava were to lose to cancer, I would never have the heart to clean out her room, to give her things away, to even throw away the tiniest scrap of paper that might hold a scribble that she's drawn. It is with desperation that I fold away her clothes, give away things that she's outgrown, throw out broken toys that may later be so hard to part with knowing she once played with them.
We have a bone marrow biopsy coming up this week and we pray that her marrow shows no new growth of her cancer cells. If there is progression of the cancer, the tentative plan is for just me and Ava to go to Seattle. This means that I would have to leave behind my sweet Gwen and Jude...So I put up the baby gate, lowered the crib, washed all of Gwen's clothes and put them away neatly. I washed sheets, cleaned out the garage, sorted the toys neatly because I need them to sense my touch and my love even it if it's just in clean clothes that fit, neatly organized toy bins, and safety near the stairs. It's the least I can do for them.
I am thankful for time to prepare.
2) I am thankful for the meals that were sent. I entered the new year 4 pounds heavier than the week before. Normally I lose weight during stressful times but there was so much food in this house between all the meals that were sent and my mother-in-law and my mom cooking that we put on weight just by smelling the air. It's the most satisfying weight gain I've had in all my life, though, because it is a direct result of all the love that has been poured out on us. Thank you so much to everyone who has brought a meal, dropped it off in the cooler, and then texted me feeling bad that they didn't make enough for the party that we were presumably having. They probably thought that because of all the cars in our driveway. No need to worry; the food was just the right amount. We just have a disproportionate amount of cars.
3) I am thankful for all the generous donations that were given to us during this whole journey. There used to be a time when I would get all sweaty and nauseous thinking about how insurance was not going to cover this or that. We're still getting the crazy hospital bills (did you know that a transplant costs one million dollars?) but God has taught me, through you, that His provision is real.
Thank you, also, for the clothes that so many of you handed down to us. It's strange but buying clothes is one of the hardest things to do right now. I used to love shopping the sales for next year's clothes but now it's just another painful reminder that the future is uncertain. Last year, instead of buying school clothes for Ava, I bought 8 pairs of pajamas knowing that she would be in the hospital for most of the time. This year, I walked out of Old Navy in tears clutching one shopping bag for Gwen and Jude.
Grief is...buying only two new sets of clothes for the spring when you have three children.
Thank you for sparing me this unbearable heartache.
4) I am thankful for friends that don't shield their children from sadness. Ava's best friend from school, Sooha, has frequented our home in the past few months. They were separated for so long while we were in Seattle and even when we got back due to Ava's isolation period. When she hit her one year mark, Ava begged to have Sooha come over and play. They had several sleepovers since then and any time I texted Sooha's mom, she was here within the hour to play. I am so very thankful for parents like Sooha's who don't shelter their children from possible pain, like the death of a friend. Instead, they let their child play with mine and by doing so gives us the greatest gift of all: selfless love. And, Ava, oh how she smiles and delights in the simple joys of childhood like having a best friend to whisper secrets back and forth with late into the night.
5) Finally, I am thankful for insomnia, crying babies who have lost their binkies, and dogs that have to pee in the night. Because when I can't sleep, I can pray. It is well with my soul when I am in the throne room of the One and Only, the loving Father, who gently dries the tears, restores our spirits, and quiets our hearts. Thank you, Father. You never slumber. You never sleep.
1:27 a.m.
It has been 68 days, 13 hours, 7 minutes, 45 seconds since Ava's relapse and she is currently in the next room with Sooha dreaming away. Thank you, God.
Thanksgiving is long gone, but remembering His goodness has propelled us to this place of perpetual thankfulness.
"Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus." 1 Thessalonians 5:16-18
Pretending to want to build the gingerbread house when all they really wanted to do was eat the candy.
Sleepover with Sooha watching Paul Blart: Mall Cop. #dontjudge
