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This is not how I planned on reintroducing myself to the world wide web. I intended this to be a work website with photographs of spaces that I helped create for events from concerts and galas, simple family meals to festivals, film sets and workshop decor, maybe even a wedding or two. I love hearing what people are imagining and helping to make that dream come to life. Events are so much fun and people are so excited to be gracious hosts and I absolutely love the detail work.
But this year, even with several opportunities offered me, I have had to back out far too often because my real job as a wife and mother have necessarily taken a front seat. And I’m worn thin. Threadbare. I literally am needed to care for each member of our household in a unique way due to major health concerns that have developed over the last couple of years. The most recent being my daughter’s diagnosis of Autoimmune Hepatitis in September, and my husband’s Renal Cell Carcinoma returning so quickly and spreading so vastly after losing his left kidney to cancer in May of this year. Since October 3rd, I’ve been stretched in ways that I did not, could not, imagine. I’ve also received blessings from the generosity of so many people, friends from high school, acquaintances from the kids’ sports teams and clubs, even the church where my daughter’s teacher goes to school. One donor I met at an event a couple years ago and I don’t know how he came across our MealTrain, but he topped it off and over.
So I don’t really know how to start sharing this part of the story. The story of the caregiver (who herself has a disability and struggles with mental health concerns) who has to defer a dream that would have filled a spiritual and academic void in her life – to do the nitty gritty of surgical aftercare for one daughter, preparing hearty meals for a husband that is barely maintaining weight even with 1000 extra calories a day, a child on steroids and immunosuppressants, several children on various medications to be able to go to school and cope with everything thrown at them that is over and beyond what I experienced in school in the 80s and 90s.
I’d love to talk about hope in the midst of dreary darkness. Something that there is a lot of this time of year. Part of the reason hope is one of the traditional words of advent…a light in the darkness1, the thing with feathers2, a lowly little sewer rat3. Right now I am beginning to realize that I can’t “create” hope in my heart or mind (and/or soul), and it isn’t a feeling that can magically pull me through to the other side of these experiences. I think of all the people who I love who have lost someone too soon, and I see so much strength and dignity, beauty and integrity. Things I don’t feel at all in this time. I feel weak, afraid, – the word “daunting” comes to mind.
But I know that it isn’t up to me to be hopeful or feel hope or even create hope for my kids. I’ve already spent so much time trying to make this a special, memorable Christmas, make all the things perfect, because we don’t know what will happen in 2024. Yeah, daunting is definitely the word that describes the impending feeling of overwhelm that comes with not knowing how/when things will/won’t happen. I know that Hope is already there. That the “light at the end of the tunnel” isn’t a train barrelling down on me, but a guide to get through this season of darkness that seems to pile on more deeply with each day.
Yet, several times a day I hear myself say “Thank you God” for the little things. The “Scattered Graces” if you will. A random refund cheque in the mail for a switchover with the kid’s cell phone, an email asking if someone I’ve never even met could share our Meal Train with other parents at the girls’ school. A parking space opening up close to the Costco entrance, the blanket of snow that made everything so beautiful this weekend. Some sweet moments with the kids, a heart to heart with my husband, a birthday dinner for my eldest to look forward to. THOSE are the hope, the light, the presence of Jesus in this fallen, dark world.
People from our past have gathered around us to pray for and encourage us. Moments of beauty in the Body as we keep ourselves out of “crowds” because of the two immune-compromised individuals in our household. I sing the Christmas carols loud when no one else is home, and remember how we used to go Christmas carolling for hours when I was growing up. I remember helping plan the Nativity play each year, and organizing food hampers. Now I struggle to pick up my Bible once a week because so much of my anger in this situation is at God for “letting this happen.”
I don’t know how we are going to go through this. One day is too big a block for me to focus on, I really just need to hear His Voice again in the midst of all that seems to be falling apart. Maybe that is why I’m feeling the necessity to share my agony so openly. Maybe there will be a Word that comes from God through someone who knows what it is like to watch a loved one whose health is failing, or whose child is sick with an incurable disease, or with devastating depression and anxiety. Maybe the word will not be a platitude, but actual empathic accountability for me to know that most of my job right now is making sure I am healthy enough (physically, emotionally, mentally, spiritually,…) to care for my family. I don’t have much else more I can give. I have to let go of the seeking outside-the-house praise and purpose, and find a way to fill up this post-menopausal body with nutrition and exercise for brain, heart and mind, soul.
So hope. It comes whether we want it or not. It just IS. Like the “I Am,” we don’t have to believe it to see it, or fabricate some experience to touch it. Hope is there waiting to be (or not be) recognized. Its benefit is for me, without asking anything in return. I don’t even have to be grateful for it (to be honest, sometimes I’m angry that something works out while everything else is falling into sticky mud puddles). Hope just might be both the bird that sings and the rat that keeps on keeping on through the muck of life.
I saw you today, God, in the email from the woman from the girls’ school, I felt your comfort in the hugs with my mother-in-law and my youngest daughter, I heard you whisper “hope” when I sat down to text my sister-in-law, I tasted your goodness in my son making dinner for us tonight, I smelled your exuberance in the tuber room at The Farm with all the eucalyptus and greens from the wreath making. Thank you for opening me up to recognize this tonight. Please help me to know that you exist in faith, in love, and in hope.
- “In the beginning was the Word, and the Word was with God, and the Word was God. He was in the beginning with God. All things came into being through him, and without him not one thing came into being. What has come into being in him was life, and the life was the light of all people. The light shines in the darkness, and the darkness did not overcome it.” John 1:1-5 NSRV. ↩︎
- Hope is the Thing with Feathers ↩︎
- Hope Is Not a Bird, Emily, It’s a Sewer Rat ↩︎
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