The Way Home

A daughter with Down syndrome comes to terms with her mother’s death.

It was late September, 2018, when I realized that my mother’s health was rapidly failing and she might only have days left to live. My thoughts struggled in a maze of questions and considerations. I desperately wanted to make her home-going a good one, to smooth her path in any way I could, but I felt like a blind woman in a forest full of vines.

One thing, however, stood out sharply, the lens of my troubled mind focusing on it and forcing everything else into the background: What about Iris?

Iris is three and a half years younger than me and twenty-one months younger than my sister Ria. She has Down syndrome.

Iris with her mother Photographs courtesy of the author

Mom was never one to worry about the future. Perhaps her remarkable life had taught her how futile that was. When she’d been diagnosed with cancer two and a half years before, she accepted the news with surprisingly little emotion or drama. She had immediately decided that the best thing to do was to do nothing different at all. She’d always lived energetically, welcoming others, and that seemed to be the best way to continue for whatever time was left. We, her family, were sometimes tempted to question that course, but she was so sure of it that her confidence and peace rubbed off on us, sometimes almost lulling us into thinking that she didn’t have cancer after all.

So we had never really discussed her wishes for Iris. She had written a letter for us to give Iris after she was gone. She and my dad and I had recorded the childhood favorites she’d sung Iris at bath time and bedtime – songs that had never grown old. But not knowing what her final days would hold, Mom hadn’t wanted to waste time on what-ifs. The only thing we did discuss was that Iris should not be lied to, and yet should be spared the awfulness of cancer and death as much as possible. For the rest, Mom trusted us.

In a way that no one else could, Iris was paving the final, sacred yards of Mom’s path, putting up shimmering signposts, and sending her strength for those last few steps.

Now the final days were suddenly upon us and, as the oldest daughter, I could feel the weight of my mother’s confidence upon me. Making sure Iris was okay during this time felt like one of the most important and lasting ways to show my love to my dying mother. But only God knew how I was supposed to do that.

And of course, He definitely did know. For years, I’d been following Confessions of the Chromosomally Enhanced, a blog (now mostly Instagram posts) written by Elizabeth, whose older sister Leanne has Down syndrome. Elizabeth and her husband decided to adopt a child with Down syndrome before having kids of their own, so their household includes two chromosomally-blessed individuals. I had been too busy to read the blog much, but something prompted me to take a look one evening. Maybe I was craving some of the comic relief it often provides by holding a mirror to situations I know so well from my own sister.

As it happened, Elizabeth’s family had just been given devastating news of their own: her and Leanne’s beloved mother had suddenly fallen ill and was not expected to live more than a few days. Elizabeth was scrambling, just like me, to help her sister process it all. An obscure web listing led her to a woman named Melissa Levin who’d given a seminar on Down syndrome and grieving. Elizabeth posted a series of immensely helpful blog articles on this – right when I needed it.

Melissa Levin’s key piece of advice? Create concrete, activity-based final memories between the person with Down syndrome and the dying loved one.

It seemed so obvious once I read it. Iris’s memories are almost always connected to concrete objects such as the outfit she was wearing when a particular event took place. She is extremely direct and linear in the way she remembers things.

I immediately set about finding an activity that Mom and Iris could do together. The next morning, I had them page through the elaborate album of baby photos and stories that Mom had put together when Iris was small. I put considerable effort into setting up a surface over Mom’s recliner and getting Iris a chair of the right height. I videoed much of their exchange. Iris loved looking at the photos of herself, and Mom loved telling all the old anecdotes. I figured the album itself – not to mention the video – would serve as concrete reminders later on.

Then I breathed a sigh of relief. At least I had done one thing well, had chopped down one fat vine in that dense forest and made the path just a little bit wider. All things considered, I had done my best for Iris.

Iris, however, was about to show us what she could do for us.

In her final week of life – in early October – Mom became too weak to get out of bed. Iris came to visit her every morning. Often, it was just the two of us together at her bedside (Ria was busy packing her four young children off to school and usually arrived later on). Because there wasn’t really anything to say, Iris and I fell into the habit of singing. Iris always wanted to sing a song that went like this:

In heaven, in heaven is jubilant joy;
The angels are singing for they are with God.

And singing and dancing their praises to God
Creator of all things in heaven and earth.

This wonderful joy is a City of Peace
Where love and rejoicing will ever increase.

I was not able to get through even the first verse. Iris was baffled, and my tears distressed her. Her bewilderment seemed to say “Mother is going to heaven, right? So what is there to cry about? Isn’t heaven the most glorious place?” The next day, I turned my head away and managed to make the words come out in a choked semblance of song. When she still noticed my tears, I told her I had a streaming cold and was feeling awful (at least the latter was true). That day, she reported to all her friends that she was praying for her sister who had a bad cold. No mention of prayers for Mother. (Iris always called her Mother, while the rest of us called her Mom.) Somewhere in her heart, Iris knew I was the one who needed them more.

Once, when Iris stopped by, she brought brilliant red leaves and placed them on Mom’s blanket and pillow, as if to invite the splendor of autumn into the room. Another time, she bent down to kiss Mom, then held her cheek out, demanding reciprocation, as she often did: “Kiss me!” The kiss she received must have already been as light as an angel’s feather because Iris – solidly planted on terra firma – did not feel it. “Mother! Kiss me!” she insisted again. “I did!” Mom triumphantly replied, repeating the kiss with a sparkle in her eyes.

Later, when Mom had fallen into a coma, Iris found it hard to be in the room for long. She tried to talk to her and was puzzled when Mom didn’t reply. So Iris went outside and found the swing that stood not twenty feet from Mom’s ground-floor window. Swinging has always been Iris’s “me time,” her way of processing the day, and (I believe) her form of prayer.

Again, God knew what we needed when we needed it. Those early October days were unseasonably warm, so the windows were wide open. As Iris swung, she sang, her voice floating above the noise of the metal hangers that creaked against the swing frame. With surprise, Ria and I noticed that all of her song choices had a common theme: they all spoke of the journey to heaven. “Hold out your light, you heaven-bound soldier.” “We are climbing Jacob’s Ladder.” “Let the heaven-light shine on me.” And, of course, “In heaven, in heaven is jubilant joy.”

In a way that no one else could, Iris was paving the final, sacred yards of Mom’s path, putting up shimmering signposts, and sending her strength for those last few steps.

Mom died peacefully in the early hours of October 11, 2018. We had decided not to wake Iris or the grandchildren if it happened at night. Perhaps Mom showed her approbation with that plan by going when she did. Later that morning, Iris came over as she always did. Dad was too overcome to speak with her, and Ria and her husband had gone home to tell their kids. So it fell to me to tell Iris. I had no idea what to expect.

“Iris, I have something very special to tell you,” I said. “This morning early our mother died and went home to heaven.”

“Oh wow!” Iris responded with reverence and awe. “My mother went to heaven!” She paused between each word, her tone suggesting that this was the best news I could possibly bring. “Wow!” she repeated a few more times in wonder.

Then she turned and looked straight at me. I waited to receive the profound wisdom or comfort that was surely coming.

“What’s for lunch?” she asked, wholly unaware that – no matter what I was expecting – it was not this.

I was too surprised to speak. You have just been told that your mother has died and you are wondering about … food? It was my turn to be baffled.

But as I pondered it, I realized that Iris was not burdened with “the correct way” of doing things. She did not worry about any seemly display of emotion or feel the need to pause for an accepted amount of time before moving forward. She simply lived and let that fact be known. Her question told me, “Mother is in a wonderful place. She has fought the fight and finished the race. But I am on earth, and down here we do still have to think about things like food and clothing. Even if the how has changed, there are a few constants, and I’m going to hold on to them.”

Tears and laughter simultaneously erupted from me. And I think that’s just what Mom would have wanted at that moment: Sorrow and joy are sisters, after all – with honesty anchoring both.

When our mother had been laid out for her wake, I took Iris to her side and gave her a bouquet of roses to place in Mom’s hands. Three pink roses for three daughters (a friend had just brought them to us from her garden – the last roses of the year) and one white rose for the baby she’d lost and whom she was looking forward to meeting. Iris had sometimes been anxious at wakes and funerals, so I wondered how she would react.

Once again, she surprised me. Iris walked right up to Mom’s bedside and triumphantly arranged the roses, then bent down to give her a kiss. Not a whisper of anxiety or fear, only love. It was as though the shadows of death could not come near the purity of her heart.

Iris remained joyful and positive throughout the funeral and many days beyond, marveling with us – in her way – at the wonderful blessing and providence of God. It was only after a number of weeks that she began to experience the finality of death in the absence of her mother. I’d begun to wonder if Iris had actually understood that Mom was not coming back. There were no tears, no outward signs of distress. As if sensing this, Iris started saying, “I miss Mother.” It has become a mantra, repeated whenever Iris sees me, which is often daily. These simple words open up space between us for memories and thoughts, or even just a simple, “I know. I miss her too.”

I have longed intensely to feel my mother’s presence or to see her in my dreams, but have not. Perhaps Mom was reminding me to look through Iris’s eyes.

Another way that Iris grieves is by asking where Mother is, and how or what she is doing. After a few awkward attempts to explain things that none of us can truly fathom, I figured out that the best way to answer was to put Iris’s question back to her: “How do you think Mother is doing?” “Mother is happy. She is in heaven,” is all that her sweet heart needs as reassurance. Once again, her directness opens realities that my more labyrinthine mind tends to stumble over.

This was driven home when, about a year after Mom’s death, Iris had to undergo a medical procedure that involved general anesthesia. She was anxious although I stayed with her until she was asleep. The first words out of her mouth in the recovery room were, “Mother was watching over me.” In the months since then she has referred to this by saying, “Remember when Mother watched over me when I was in the hospital?” I have longed intensely to feel my mother’s presence or to see her in my dreams, but have not. Perhaps Mom was reminding me to look through Iris’s eyes.

If it seems as though Iris is a candidate for sainthood, I can assure you she is not. Like every human being, she has feet of clay. Spending time with her can be draining: she verbalizes every thought and asks questions incessantly. She’s capable of being as selfish and ornery as the rest of us. The experiences I’m relating here have been filtered through months of the mundane and exhausting.

Yet as I reflect on the three years since those unforgettable October days, it’s clear to me that Christ worked through Iris to illustrate deep truths. “Do not grieve like those who have no hope” (1 Thessalonians 4:13). “Unless you change and become like little children you will never enter the kingdom of heaven” (Matthew 18:3). And the comfort that Jesus gave his disciples before his own death – “Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid” (John 14:27).

But it’s Matthew 6 that I think Iris most embodies. This chapter tells us not to worry about food and clothing – and while the casual observer could be forgiven for thinking that’s just what Iris does best, the deeper point I think Jesus makes is to be heartfelt and unpretentious, not calculating or future-driven. Hey, if you are going to think about food – and who doesn’t? – don’t put on airs about it! Just spit it out: What’s for lunch?

Before the funeral, I quietly took three of Mom’s best dresses from her closet and asked a local seamstress to alter them to fit my sisters and me. When our mother was laid to rest, we each wore a tangible piece of her, as if to solidify the legacy that we would have to carry on in tangible ways.

Because, I realized, what was good for Iris in her childlike closeness to all that was most genuine in life was probably good for Ria and me too.