when a mother’s heart shatters: picking up the pieces.
“Though I’m poor and needy, the Lord thinks upon me. I’m always on His mind. Though I’m weak and lowly, the Lord dreams about me. I’m always on His mind.”
-Always on His Mind: Misty Edwards.
The grief and pain that threatens to rip my heart apart at any moment is slowly subsiding. I still wake up in the night, and instantly my thoughts turn to Florence. All is not well in my world. She has a condition. Oh. My. God. And then I sleepily pick up the pieces and tuck them away, take a deep breath and ask God for more grace. And I fall back asleep.
Sometimes the smallest thing will set off my sorrow. She may have a tired day. I might find her slumped over in her Bumbo, shoulders sagging, crying out in rage. And I cry out with her, my head exploding with pain.
Sometimes she smiles at me, full of life and joy and I cannot fathom how I could cope without her in my life.
And. It breaks me. I have been so broken over the last few weeks. I have grieved. I have anticipated the loss of my sweet baby girl. I have imagined what her life might be like. How short? Will she walk? Will she marry? Will she just stop being able to breath on her own? Is her chest weak? The blue summer sky has turned colourless. The sunshine has been blinding. The food, acrid and tasteless. I thought I’d never eat again.
And I’ve cried so long and hard. The depth of my sorrow knows no bounds. I cry as I write this, still raw with pain.
So you can imagine why I believe in miracles. I cannot function without that hope. If I did not know Jesus intimately, I am sure this would be my downfall. I would be completely and utterly devastated in mind, body and spirit.
When we first found out about her condition, I thought I would die with fear and pain and grief.
The doctors “say it’s genetic”, which means there is a 25% chance that our other children could be born with it. That in itself is enough to erode the joy from the heart of any mother. I have another very close friend who has similar statistics for another genetic condition, and though I grieve for her too, I am thankful for the camaraderie. We stand together, believing in miracles.
I don’t want to get too deep into detail about the shattering of my heart, again and again. I have screamed and wailed into my pillow terrified by my own animalistic cries. I have cried until I’ve fallen asleep, too tired and exhausted to think. The pain has been blinding, crippling. Part of the pain comes from a place of shock and surprise. How many people go through this? This is absurd. This is unbelievable. This is not happening. WHAT is this? The textbook outcome of the type 1 condition in infants is not good (unable to breath on their own, not reaching their second birthday, unable to eat, etc: grim). But as a child grows with this condition, the prognosis changes, I believe. And Florence will grow. As I mentioned before, I have not researched and will not be doing any online. I’ve decided the best person to talk to about this is the neurologist. She deals with all the cases in British Columbia. She knows how to be sensitive. She knows the fear that parents may face.
And I’m taking it day by day. His mercies are new every morning.
She is still my sweet Florence. She, like her name means, is flourishing, prosperous, blossoming.
Although this post may seem hopeless and full of raw, aching pain, know that I’m picking up the pieces. I’m back in my garden, weeding furiously, planting for an autumn harvest. The garden gives me something to focus on, or rather allows me to turn off my brain. Sometimes I put Florence in the Ergo and weed with her strapped to my chest (this is not easy and usually ends with me sweating and wondering why I thought it was a good idea: but I just want her close to me!)
We are back on the road, going for walks. The sunshine feels real again, food is tasting sweet. Hope arises each day, often trumping the fear that accumulates in my head.
I believe she will sit and crawl and walk and dance and eat and marry. I believe those missing genes will appear and our family will be whole.
I wait in the stillness, I wait in the quiet. When we go through suffering, our hearts are drawn closer to the Father’s heart. I have tasted and felt His Love so rich and sweet. I have been completely wrecked by his goodness and grace. I have felt faint with Love, while walking down a busy street. Tears have slipped down my cheeks and I have sung my heart out over and over, covering Florence with His promises. When I feel that fear creeping in, I sing at the top of my lungs and I lean upon His promises that He has spoken to Florence and I:
“For I know the plans I have for you”, declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
Thank you all for your kind words and prayers. The heavens are being stormed with the prayers of the righteous, and we feel the covering of His grace.