Retrieve Lament: Les & Renee Aylesworth's mourning story

Throughout this week that we call Holy, I've invited a few friends who have companioned with Christ and His people in suffering to share a bit of their stories with us. I asked my friends Les and Renee if I could share an update on their lives three years after Renee, at age 38 and the mother of 5 children, ages 20 months - 13 years old, suffered a stroke. Les was a God-send to us when we were first figuring out how to be parents to teenagers - befriending our oldest son at a key time in his life. We've grieved Renee's illness from a distance and have grown in our ability to understand what suffering-bourne love looks like -- in marriage, in family, and in community. Would you read their story with me, and listen with an open, prayerful heart for any words Christ might be speaking to you through them?

 Renee's stroke took the use of her dominant right hand, but she has taken up painting with her left hand. This is a watercolor she painted near the third anniversary of her stroke.  Les shared Renee's interpretation of the painting this way:  "The 6 bright flowers in the bright sunny blue skies on the left side of the painting represent me and our 5 kids. The tallest is me, the next is Ivan, and so on. If you look closely, you'll notice another flower in the middle, leaning into, almost consumed by, the dark, stormy area. That flower is Renee, and the dark area represents  aphasia  and her inability to communicate and connect to the rest of us. While the rest of us stand straight and tall, her flower is bent and weak, and bends from the bright side and into the darkness. It's as if she's in this "in between" place. Her mind is stormy and dark because of the aphasia caused by her stroke, while part of her is still in the sun. I know there is a storm raging inside there that causes confusion and despair, but my hope and prayer is that that flower strengthens and grows tall once again in the sunshine, and the storms dissipate and once again she can connect with us as before."

Renee's stroke took the use of her dominant right hand, but she has taken up painting with her left hand. This is a watercolor she painted near the third anniversary of her stroke.  Les shared Renee's interpretation of the painting this way:  "The 6 bright flowers in the bright sunny blue skies on the left side of the painting represent me and our 5 kids. The tallest is me, the next is Ivan, and so on. If you look closely, you'll notice another flower in the middle, leaning into, almost consumed by, the dark, stormy area. That flower is Renee, and the dark area represents aphasia and her inability to communicate and connect to the rest of us. While the rest of us stand straight and tall, her flower is bent and weak, and bends from the bright side and into the darkness. It's as if she's in this "in between" place. Her mind is stormy and dark because of the aphasia caused by her stroke, while part of her is still in the sun. I know there is a storm raging inside there that causes confusion and despair, but my hope and prayer is that that flower strengthens and grows tall once again in the sunshine, and the storms dissipate and once again she can connect with us as before."

Les and Renee's journal entry from February 26, 2017

(the third anniversary of her stroke)

It struck me tonight that 3 years ago was the last night we went to bed without stroke being on our minds.  Renee was going to go to the doctor to get her headache checked out...but that never came.

I can hardly believe that 3 years has passed. I remember when it was 3 months and that felt like an eternity; and the thought of 3 years was nearly impossible to fathom. And yet, here we are.  I think we always tend to reflect on anniversaries of any kind and this is certainly one that makes you think a lot.  People who have survived strokes call them a "strokeversary", so Renee is having her 3rd Strokeversary.  It truly is a badge of honor, because surviving a stroke is a big deal!  Especially considering in those initial minutes Renee thought she was going to die and meet Jesus, and in the initial hours, the hospital thought the same.  But she didn't and one of our first prayers of many prayers prayed for Renee was answered.  She lived and I'm able to share about life 3 years post-stroke.  

I remember in those early days, when we were in the ICU, every time I went back to Renee's room I prayed and hoped that I would walk in and see Renee sitting up in bed and say, "Hi Les." I hoped after she went through the initial procedure to attempt to remove the clots, just hours after the stroke, that she would come out of the procedure all better. I had hoped after our stay at the rehab hospital that they would help put Renee's brain back together again and that she would be all better.  "All better" is what the kids and I have prayed thousands of times since February 26, 2014. But "all better" hasn't come; and that is hard for all of us.

Yes, we strive towards some kind of new normal, but that is hard to swallow too. I think it's because we rarely believe or think that the "new normal" will last very long. We tend to think it's more like going to another country where there are different customs and languages and foods and even restrictions, and everything seems different and for the duration of your stay that is your "new normal." But you know that you will eventually come home and the "new normal" will have been temporary, and you will resume your "old normal." That's at least how I imagined it even as I tried talking myself into accepting our "new normal." But the "old normal" is gone and the "new normal" is here and as far as accepting it, I'll be honest, I'm not there. I want to, I really do, but I still haven't come all the way to full acceptance of it. I'm, after 3 years, still grieving the loss of the wife that I once knew.

Now I'm aware that's normal, to some degree. Others I've spoken to that have survived stroke said that it wasn't until after 5 years that they felt or knew it was going to be OK. Five years? I don't know if that gives me relief or gives me chills. Still, I want to feel OK now; and I wrestle with that tension. But, I was recently reminded that it wasn't until many years after Joseph was abandoned by his brothers, then sold into slavery, then thrown in prison, that he could tell his brothers that what had happened to him, God meant for good. So I try to have grace for myself.

And for Renee, this strokeversary is mainly filled with disappointment. She was certain she would be doing much better by now. So was I. But her days, after Aviah goes to school, are mostly boring for her. That is, when she's not battling the many effects of the stoke. She wishes she could read a book. (As an aside, literacy is more important than you can imagine. It truly allows people to expand their worlds; but being unable to, Renee's world has shrunk.) She wishes she could call a friend and shoot the bull. She wants to hop in the car and go visit someone. But she can't, and so she spends half the day alone and lonely.  

Life is harder than we thought it would be at this point. We had hoped for more progress by now.  We had hoped we would be feeling better about the whole thing. I find that we are still very much in the dark forest in our journey. And yet, when life has felt darkest, God has always sent a little light for us to give us hope.

Renee hasn't had a seizure since July. Last year, at this time, I wondered if we would ever be past them; and here we are. So now Renee is released to start driving again. Which of course brings about a whole new slew of worries for me (especially now that Ivan recently turned 16 and got his permit). Most of the things that give me hope, like most of the things I miss, are little things: a new word, a new phrase, the fact that she makes most of our meals now, or that she gets the coffee ready for the morning most of the time. She even has been waking up earlier, many times before me, and making me coffee! She was always a morning person, so it's good to see a little bit of the old Renee coming out. She has been able to stay home alone since the start of school year. This has removed a huge burden off me, because one of the biggest logistical tasks I had to perform every day was making sure there was someone to stay with her. Now I have so much time on my hands I don't know what to do:)!  There really are too many to share of how God has provided little lights to brighten our lives.

I recently stumbled across a kids' book that came out recently called The Voyage to the Star Kingdom. The book primarily deals with the loss of child, but there is something in it that speaks to all who have gone through prolonged suffering. It's about a family that finds itself deluged by a storm cloud that settles only over their house and won't stop raining; and the rising waters threaten to destroy them. And this is how it's felt for us these past 3 years - like a storm cloud has settled over our home and won't go away. It just won't stop raining; and it has felt like many times we were going to be swallowed by the flood. I very much resonated with that image and I'm sure many of you can too.

But, the book goes on to describe how the Star King, even though he may not stop the storm, always sends a gift of something or someone to help meet a need. And this too has been our experience. Over these past 3 years, even though the storm cloud has continued raining down on us, we have seen the hand of God provide in so many ways that I suppose could fill books! So many of you have faithfully prayed for us.  Over the course of several months this past year, Renee kept getting anonymous postcards from someone as they traveled around the world, telling her that they were praying for her wherever they went. You can't imagine how that encouraged and lifted us. 

 Renee with a painting from a friend

Renee with a painting from a friend

So we covet your prayers still. We need wisdom and open doors for Renee to enter a clinical trial for stroke treatment. We need safety as Renee starts driving again. We need no more seizures to continue. We need Renee to make more tangible progress in her speech. We need her ankle to stop rolling and constantly being injured. I need wisdom in just doing life as Dad, Mom, Caregiver, Neurologist, Nurse, Chauffeur, Cheerleader, Secretary, Speech Therapist, Physical and Occupational Therapist, etc...oh, and Husband too.  

We really want to do this journey well. We really do. We want God to smile down on us. And for Him to be glorified somehow through this. Even though it is hard to accept our "new normal" I want to trust Him - no matter what!

Isaiah 42:2-3a: "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior"

Thank you again for helping us weather this long storm, and helping us not be swept away. We love you for it!


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Les & Renee live in central New York with their five children.

You can follow Les & Renee's journey on their Caring Bridge journal.  

Once, ritual lament would have been chanted; women would have been paid to beat their breasts and howl for you all night, when all is silent. Where can we find such customs now? So many have long since disappeared or been disowned.

That’s what you had to come for: to retrieve the lament that we omitted.
— Ranier Maria Rilke, "Requiem For A Friend"

(You can read all of the Retrieve Lament stories from previous years here.)