It was nearly three weeks ago that Dion looked at me and said it was time to go to the hospital. We were out at the time, so I got him in the van and drove to the nearest emergency room. Once there, and after a bit of time, it was determined that Dion had an infection, one that was now in his blood. For someone with advanced progressive Multiple Sclerosis such as Dion, an infection is a particularly traumatic thing. His already reduced energy is forced to focus on it, leaving him unable to move. We always hope that with time, recovery will come. We also know that post-infection often means a new normal. 

At this time Dion’s left hand is doing very little. He has regained some use of his right hand, though it is different than before. This, along with a variety of other things, means that Dion needs an increased level of care. It seems that the time has come for Dion to move to an assisted-living situation, one that will ensure he has access to what he needs around the clock. Even though we have known for the last 24 years (the amount of time MS has been an unwanted guest) that this could happen, this new reality is very fresh and raw.

I will not attempt to share or explain what the last few weeks have been like for Dion. That is his story to share. I will offer some of my own experience. Due to a variety of situations over the course of my life, I have learned to step into the middle of crisis. I can navigate a hospital room. I am not scared to raise my voice as an advocate. I sit vigil. And so, when Dion was admitted, I began to do all of these things, except with many limitations because of the pandemic. I needed to book appointments to visit, was rarely able to speak with his health care team, and felt increasingly overwhelmed. As the severity of the situation became more apparent, I felt desperate to have support in making a plan. This culminated with what I believe was a panic attack in a hospital hall. The fact that it took this kind of event to feel heard is, in my opinion, wrong. 

Fighting for what we need to keep Dion safe, and for me to keep my head above water has been an up-hill battle. We feel grateful that Dion’s sister was here through a very tough week, and that our village has surrounded us with such care. Just when we thought the immediate options had been exhausted, we got the news that Dion could enter a rehab program at Toronto Grace, a hospital that we hadn’t even considered, but is proving to be exactly right. We needed a win and are grateful to have been surprised by this grace. We do not yet know what will come after rehab. We covet prayers and thoughts for Dion, for me, and for Cate as we navigate this part of the journey.

In the midst of all this, I have been helping Cate move to her new apartment. By Tuesday both my husband and daughter will no longer be living at home, something I cannot yet grasp. I am weary and sad. Every morning I wake up and immediately notice the anxiety I feel in my gut. I recently described myself as feeling paper thin, like facing one more obstacle might rip me in half. And yet, I am aware of being carried by God, and the faith of our friends. I have not lost hope. I am constantly praying and trusting that what needs to be, will be. And I’m not just saying that. 

I think I will close with words not my own, as for now, I have few more. “Heavy”, by Mary Oliver: 

That time
I thought I could not
go any closer to grief
without dying

I went closer,
and I did not die.
Surely God
had his hand in this,

as well as friends.
Still, I was bent,
and my laughter,
as the poet said,

was nowhere to be found.
Then said my friend Daniel,
(brave even among lions),
“It’s not the weight you carry

but how you carry it –
books, bricks, grief –
it’s all in the way
you embrace it, balance it, carry it

when you cannot, and would not,
put it down.”
So I went practicing.
Have you noticed?

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe

also troubled –
roses in the wind,
the sea geese on the steep waves,
a love
to which there is no reply?

16 thoughts on “The Heaviest of Times

  1. You who have given so much to the people of Toronto now need to let go and let God give to you. He will find a way when there seems to be no way, he works in ways we cannot see , he will find a way. Breathe deep. You are loved by many!

  2. Wow that is a very powerful poem. Yes to trying to be conscious about how we bear our burdens and yet for me I will continue to pray that your burdens become lighter. I know you know ” come unto me all you who are heavy laden…” my own way to bear the unbearable has been to visualize walking like 2 oxen yoked together with Jesus and then to picture rolling my burden along the length of the yoke onto Jesus. He turns and smiles and let’s me know he is fine with it. Each time I do this, I part is simply to remember to roll that burden over to.Him. I guess He doesn’t just take it, because even in.those times He wants me to freely desire Him and His help.
    Bless you Erinn and please know I am most fervently praying for your burden to be made lighter ASAP.
    Love sue

    1. Erin, I have no words – I just will pray that in these most difficult times of change God’s loving embrace will carry Dion, you and Cate through the waters to a more peaceful place.

  3. Thank you Erinn. We wanted to know how we can specifically pray for the three of you. At times like this we wish we lived closer.

  4. Brenda and I are remembering you and Dion and Cate. I pray for strength day by day for you in your very hard journey. Ralph Mann

  5. Erin,,,,,, , Dion, you and Kate are loved so much.
    It is times like this we know who our friends are,,,,and then we feel so blessed to know they are supporting, praying and it gives one strength to push on.
    I love the chorus,,,,Trusting Jesus as the moments fly, trusting Him whatever befalls
    Trusting Jesus , ,,that is all.
    May this be your song, my dear one,
    I want to send a big hug and kiss to you all too.
    God’s blessings and my love, Grandma Jean Ireland.❣️❣️❣️

  6. Sending you love. Praying for God’s Spirit to hold you up and give you the strength you need each day, and for times to crawl up into His lap to be cared for.

  7. My heart breaks for you. May our loving Saviour give you…Healing for Dion, peace and strength for you. Will keep you in prayer.

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