The Lucky Ones
Shortly after losing our son, Richard and I realised that it had left an impact on us that we hadn’t expected. Whenever we would see another family out and about with a child that had obvious medical or developmental needs, we would look away from them and towards each other and whisper, “It’s the lucky ones.”
It was such an unexpected pang that it took me a while to figure it out. What most people yearn for is health - medically and developmentally - for their kids. For most of Daniel’s illness, our question was, ‘how and when can we get him back to normal?’ We hoped that each investigation would give us answers about the root of his illness, and that each procedure would result in him being fixed. I even held off organising an official family photo during the two and a half years when we were a family of seven, because I wanted to wait until his eye wasn’t wonky anymore and his steroid-induced puffy cheeks had settled down. Oh how I regret that now. By the time we’d been struggling for two years with his condition, he was regularly having seizures, could no longer walk or use his hands properly, and his blood levels were so unpredictable that our focus was no longer his rehabilitation but his survival.
In retrospect, his life was like an arc.
When a baby boy is new, he cannot do anything for himself and you don’t expect him to either. This little life doesn’t exist to participate in the responsibilities of the household or the wider society he’s born into. Of course, there is the hope of this interaction in the future - that he will have a full, productive and reciprocal life - but in the meantime there is only one thing you expect from a baby and that is the joy of human connection. As a parent of a newborn you have to learn to enjoy the interactions as something you can do to express your love and care of a baby, by feeding, cleaning, dressing, soothing and watching out for him. There is no expectation of anything in return, although that eventual reward after six weeks or so when they can first look you in the eye and smile in genuine recognition of you is one of the most epic experiences ever.
We watched our boy go from no interactions - in fact we had to wait longer because him and his twin brother were born three weeks early so the smiles were even more delayed - to gradually learning to do so many things. In the first six years of his life we saw him learn to interact, to grab, to move, to talk, to walk, to form sentences, to handle cutlery, to run, to use the bathroom, to draw, to sing, to write, to be independent of us, to go to nursery, to go to school, to set the table, to read, to write stories, and so many more things.
And then during the ages of seven and eight, we watched him gradually lose the ability to do so many of those things. In the last few months, taking care of him was like having a newborn baby again. Except it was so much more rewarding than before because by then we knew him even more. We knew his quirks and his passions and his cheeky sense of humour. We were so grateful that although so many brain functions stopped working, they didn’t include his memory, personality or ability to communicate with us.
We had the talks that we needed to have with each other and with the medical staff. If he never walked again, and had epilepsy for the rest of his life, and couldn’t use the bathroom independently, or wouldn’t be able to drive a car or have children or the other many unknown factors that still seemed years away, we would do whatever we needed to do to adapt our lifestyle so that we could meet his needs for the rest of forever.
Because we honestly got to the point where just getting to be with him was enough. We let go of all the expectations parents usually have for their child’s future and learnt to just be with him. Anything we got to do for him felt like a privilege, from spoon feeding him to following his instructions on what colour crayons he wanted us to use in his colouring books on his behalf. Whatever he needed, emotionally and physically, we would find a way of providing that. Our goal was this: to be his safe place.
It might be the purest kind of love at all, because it’s completely unconditional. Even when he was on steroids to reduce inflammation, or on morphine after the pain of surgery, and the chemical imbalances in his body resulted in extreme mood swings and irrational outbursts, it didn’t diminish that love. That stuff may have exhausted our patience, stolen some joy, messed with our peace and produced reactions from us that weren’t always gentle or kind, but it probably only deepened our love because there were no expectations on his behaviour at all - just sympathy for what he was going through and deep respect for all the time he didn’t spend complaining about it.
It had a knock-on effect on the other relationships around him too. Watching my husband learn to patiently walk through problems he couldn’t fix and see a greater tenderness for our sick child and his siblings increased my love and admiration for him too. He grew in his respect for me as he got a greater understanding of what it looked like to be a primary caregiver around the clock without another role to escape to. We loved our other kids with the same kind of patience and freedom from expectations that we’d learnt through caring for their brother.
As cliched as it sounds, we valued the little things so much more because our lives had so many more of them in that season. When you can’t possibly plan for the future because there are too many unknown factors, you have to get all your hope and joy out of the day that’s in front of you instead. When a kid can’t possibly clean up after himself because he can’t leave the bed, but he notices someone clearing his food tray away and says thank you to them, that becomes a moment of heart-bursting pride. When you ask what he wants to do today and the only things he can manage are cuddles with you and listening to the audio of a movie because his eyes are too tired to stay open, you soak up that experience (and the little giggles that erupt every few minutes at the funny parts) because you’re not actually sure how many more of those days you’re going to get.
So as difficult as it is to have a family member who needs round the clock care, constant supervision, help with mobility and personal bodily functions, and many complicated medical interventions, it is also a very special thing to experience. I believe that God created us to be most fulfilled when we get to give love in its purest form. Seeing another person as God sees them, as wonderful, precious and full of value*, and serving them wholeheartedly**, may be the most divine actions we can do. Pressing pause on so many other things while taking the time to be alongside someone as they perform the most foundational actions that give and sustain life is an honour. It grounds you. It tunes you in to your own needs and feelings and slows you down to a gentle pace. It’s a special kind of duty that leads to a special kind of contentment.
So much so that when we lost the object of that care and attention, we missed it so much. I was so grateful that our other children were still young enough to need us physically so we still had an outlet for that practical love. I remember the first night back at home after months in the hospital when Daniel no longer needed us because he was safe forever in the arms of God. I was wide awake all night because the adrenaline of the machine beeps and the clock watching and the hyper vigilance of the previous week still hadn’t left my system. So I was beyond grateful when my two year old suddenly started vomiting at midnight for no apparent reason, because then I knew what to do with all that nervous energy. I had a reason to hold her all through the night and comfort her and clean her and make her feel better.
Less than two years later, when it was my husband who lost the use of his legs and was unable to care for himself due to the tumours in his spine, he didn’t object when I stepped up to do that for him too. This big bear of a man, who had always dreaded being at the mercy of another person or being unable to be the one to fix problems for everyone else, was able to remember the feeling of being able to serve the most basic needs of a loved one. He let me have the honour of caring for him too. He recognised that it was a privilege for me, not a belittlement of him. He allowed me to have those moments because he knew how precious they would be later on when he was no longer around, and how it would add to the closeness of our relationship. In my mind, that’s a greater form of dignity than fighting for independence. That brings me up to my life all these years later. Those lessons I learnt about serving someone at the most basic level have stayed with me and I’ve felt that whenever I’ve been able to connect with people right at their foundations, it’s when I’ve felt closest to God. I’m so grateful I’ve had lots of opportunities to meet people at their point of grief. I’ve had fantastic opportunities to minister with people in many different places when I share my story. I get to hear their stories of what has made them and broken them and healed them, and each one strengthens my connection with God and with each other.
Last year I began working as a support worker for people with complex needs. I have absolutely landed on my feet in a fantastic work environment with other staff that I really get along with, and hours that work really well with the rest of my responsibilities. As soon as I started, I realised that those interactive muscles of humanity were being set in motion again.
Every day when I’m at work I get to be alongside people who need support in the most foundational aspects of life. On those days I get to be the the first face they see when they wake up and the last face they see at night time. I get to make their personal hygiene routines fun by putting on music and making the ordinary motions of the day into an interactive game. I get to take them out to the park, to the beach, to the zoo, to the restaurant, and be the difference between them engaging in these activities or just staying at home. I get to read their moods, even when they have no verbal forms of communication, and dance around like a loon or give them the right amount of gentle reassurance or distract them away from a moment of tension, whichever one will turn a frown into a smile and make them feel safe again. I really think it might be one of the most fulfilling jobs in the whole wide world, and I’m so pleased that I get to do it.
I am one of the lucky ones again.
*Psalm 139:13-14, Isaiah 43:4 & Philippians 2:3 **Matthew 25:34-40 & Mark 10:44