Settling In

I woke up yesterday morning with a sense of peace. The pressure on my chest subsided and the knot in my stomach loosened a bit. Like most people in the midst of crisis, you begin to adapt to the chaos. And we have been living in this slow moving disaster for 7.5 years. We have always known what the outcome would be and tried to remain realistic with our hopes. We were told when the kids were diagnosed that treatments were not the horizon. We are certainly closer, but not nearly close enough anymore.

Waverly is stable. We haven't seen many changes since Friday. She had a lot more coughing yesterday afternoon and evening. She also seemed more spastic with her movements. We have yet to see a bump in spirit from the antibiotics, but at least we know any pain the infection has caused is slowly subsiding as they take effect.

We are trying to navigate our new normal. Oliver went back to school yesterday. Matt returned to work this morning. We have some visitors lined up over the coming days. I have had some people volunteer to pick up/bring home Oliver from school for me and/or sit with Waverly whilst I drive him. Attempting to keep his routine as regular as possible is going to be one of our goals. Friends have dropped off meals daily since this ordeal began and I have discovered that even ice cream can arrive via Fed-Ex as a lovely gifts from friends who want to share sweetness.

Our hospice nurse and doctor both visited the home yesterday. I think we have a good pain management plan in place. We talked about the nuances of Sanfilippo. I am grateful for the in home support they offer.

There is no time frame. We could settle into and Waverly remains stable for weeks, months, longer. Or things could drastically change. 

After 7.5 years of living in utter stress, we will at times look around and say we're ok. They we glance at Waverly and realize quickly that this is not ok. This is a drastic shift from her most recent normal. When people who know and love her visit, they are shocked by the changes.

One of our pastors visited us yesterday. Matt and I loved the opportunity to talk and pray with her. One of the things I appreciated the most was her prayer of comfort. It wasn't for healing or a miracle, but for Waverly to be comforted and cradled. I think when people are suffering terrible pain or strife, we too often call on God for a miracle without acknowledging the true suffering being experienced. We need to take the time to be present. 

Our job is to relieve her of pain and bring moments of joy into her life. Favorite books, movies and songs. Light up toys and music. Walks in the sunshine, cuddles in her favorite blankets, time with those who love and adore her.

I do not know when, but I do know my daughter is dying. My son is dying. And it is a privilege to hold their hands and provide them with as much dignity and love as we can muster.


Jill said…
May an army of angels surround all of you to give you the comfort and strength that you need. Praying that Waverly is comfortable and not in any pain.
Pat Cox said…
Oh Shannon, my heart is breaking for you and Matt. My prayer is for no pain for Wavy, that Oliver will understand as best he can, and that the God of all comfort will continue to uphold you all.
I've been keeping your family in my thoughts and hoping for comfort for Waverly. Thank you for sharing what's been happening with your family and know I'm sending lots of love from Chicago.
Terry Johnson-Vann said…
Hi Shannon,

I pray that Waverly starts to feel better from the antibiotic and that she is not in pain. All of you are in my thoughts and prayers.

Anonymous said…
You are so loved. praying you have snuggle time, love and moments of peace amid a very horrific and terrifying storm.

Sharon <3
Sending you my whole heart.
Jane Bowser said…
There's something very precious about walking through the valley of the shadow of death. You meet God in a very deep and intimate way that comforts you with that peace that passes understanding. I'm praying that for you and Matt - that God's presence with you permeates every ounce of your being - and that His love overwhelms you and strengthens you as you continue to love those precious children He is using to draw to in deeper to His heart. :)
Anonymous said…
Your love and faith through this time is an inspiration.
I don't know you or your family but I am so sad for you - my eyes are puffy from crying, but I know that with your family's beliefs and love the final outcome is wonderful.
God is right there with you and he knows the exact number of tears that have been shed...
I wish I could do more, but the best I can do is pray and I will every day.
Kelsea Habecker said…
Shannon, I've been following along on your blog for years. I'm so sorry to read of Waverly's newest struggles. Sending love and prayers for all of you.
Anonymous said…
Praying for you and your precious family. Praying you will feel God's arms of love around you. A verse that comes to mind is "His ways or not our ways. His thoughts are not our thoughts". So sorry that you and your family have to walk this road.
Praying for you daily.
Anonymous said…
We've never met, but I have followed your blog for several years. I am so, so sorry for what you're going though. Sending you prayers for strength, comfort and peace from Florida.
Dee said…
Just heard of you and your kids via Gina S., my sister-in-law's sister-in-law.
Prayers for comfort and peace for all of you.
And hugs, just big old tight hugs from one mom to another.
Karlene said…
Just wanted to let you know I am thinking of you all and praying especially for Waverly. I'm so sorry for what you are going through and for your children as well. Praying there is support and comfort from those around you. You are thought of and prayed for!

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