By Julie Keon
My husband, Tim, and I celebrated our 17th wedding anniversary in June. This is a day of accomplishment and reflection especially as the years pass and we are faced with challenges many couples will never have to face.
I can close my eyes and travel back in time to the 28 year old woman I was waking up on our wedding day and ready to embark on this big adventure of marriage. I had spent months writing our ceremony and we were very clear on the responsibility involved in taking these vows.
We were acutely aware (intellectually) that life was going to present some tough times but we also knew our love was strong and deep and could tackle any challenge that came our way. Besides, we had already gone through some very difficult times (enter sarcasm) like the stomach flu, unemployment and periods of soul searching and personal growth.
Life didn’t disappoint and four and a half years into our marriage, our one and only child, Meredith, was born after a healthy and normal pregnancy. Right at the time of birth, after a straightforward 12 hour labour, there was a hypoxic episode which we learned five days later caused massive and irreparable brain damage.
Suddenly, our connection, the life we had created, the plans we had made and the dreams we imagined all unraveled right before our very eyes. Our broken hearts and shattered hope interfered with our ability to do what we had always done in the past, which was cling together, love one another and find our way.
We had seven and a half years under our belts and a solid, cement-like foundation but that wasn’t enough to bear the weight of the news that the life we had planned was not going to be. Once the sheer shock of it all wore off, anxiety and depression moved in and our days were made up of moments where we simply tried to survive.
When a couple has a child with medical complexities, family, friends and even the social worker at the hospital, will tell you that you need to communicate. People will rattle off statistics about the high rate of divorce among parents of children with special needs.
We tell couples that this experience will make you or break you and then we virtually leave them hanging. For the couples just starting out, we don’t offer a lot of guidance and practical tips on how to keep your connection intact and intimacy alive even when the natural tendency is to walk away from each other.
I recall a lunch date with my husband a few weeks after we got home from the hospital. We had been living at the Children’s Hospital of Eastern Ontario for ten weeks and now we were home and spring was upon us. My parents came to visit for the day and urged us to slip away for lunch.
I wanted it to be like we were before Meredith was born. I desperately wanted to see a glimmer of “us.” Instead, we sat across from each other, fragile shells of our former selves, awkwardly attempting to make conversation. Everything was difficult in those early days: sleeping, waking, eating, talking and even breathing.
Like anyone who is going through a traumatic loss, we mourn uniquely. The how, why and what of grieving is very individual. Naturally, Tim and I coped very differently. Initially, he shut down and I took on a “We got this” mentality. I became like a machine; obsessive to do it all right and do it efficiently, whereas he moved further and further away from us and into himself.
Five months after Meredith’s birth I had serious doubts that we would make it at all.
A move to my hometown and the promise of a new beginning seemed to jolt us out of the dark place we had found ourselves. We bought an old home that needed lots of love and care to make it livable. We moved in with my parents while the renovations took place and I think that relieved a lot of our worry and stress as we had extra support and care.
Finally, we moved into our new home eleven months after Meredith’s birth and it marked a new beginning. There is always hope in new beginnings.
It was around this time that we started having people in our home to offer respite and therapies. This presented a new challenge to us. We knew we needed the help and we were grateful to live in a province that gave us financial support to employ relief workers and yet as we received more and more help, we watched our privacy dwindle.
We fought against night nursing for a long time because the thought of having a person awake downstairs caring for our child while we slept seemed so unnatural and foreign that we just couldn’t wrap our heads around it. Eventually, it became a necessity and now, almost thirteen years later, we have night nursing seven nights a week and helpers in our home every single day.
In spite of all we have endured over the years, we have somehow managed to find our way back to each other. The road hasn’t been smooth traveling.
We have both experienced periods of depression when residual trauma surfaces and more issues need our attention. We had to make decisions right from the start that we were going to hang on and stick it out no matter what. We were committed to our marriage and to Meredith.
In order to find our way back to each other, we had to be courageous and vulnerable and throw caution to the wind. I wish I could share one magic tip that made it all okay again, but when I look back, I know it was an accumulation of many things, plus sheer determination and stubbornness that got us through the dark times and brought us back to a place of deep intimacy and friendship.
I think back to those early years, long before Meredith was even a twinkle in our eye, and I applaud our willingness and naivety to vow to love one another “for better or worse.”
The truth is, most couples never imagine that the “for worse” part can be really, really devastating. And to be clear, Meredith was not devastating to us. It’s the suffering and struggles she has had to live with that have been bone crushingly, painful to witness.
We also don’t realize that marriage (or partnership) is a continuous exercise in creativity, soul searching and a never ending expansion of our love. Just when you think you have it all figured out, you are forced to tweak and adjust how you operate within your intimate relationship.
And that is under normal circumstances, let alone extraordinary ones.
I tend to be very solution-oriented and I am all about preventative health care. This means that I (we) took steps early on knowing that this experience was going to change us as individuals as well as change our relationship.
The good news is I don’t think it is ever too late to make changes for the betterment of your relationship. If you have neglected your partner and have convinced yourself that there’s no point in trying to save your relationship, ask yourself this: “If you could return to a harmonious, passionate, deeply satisfying relationship, would you?”
If the answer is “Yes” then begin now.
Every step you take, no matter how tiny, will generate positivity within your intimate relationship. Here are some tried and true ways to stay afloat when you feel as though your marriage/ relationship is drowning:
- Seek Counsel. There is nothing like setting aside an hour to unload on an objective, non-judgemental listener. You don’t want to go to just any counselor or therapist, though. Find out who, in your own community, is well educated and experienced with the complexities of parenting a child with special needs and/or medical fragility. Don’t be afraid to interview a few counselors over the phone and ask about their experience in working with couples and working with trauma and grief. Don’t waste your time on someone who specializes in addictions, for example, when you are dealing with complicated grief and marriage distress.
Go On Dates. This tip may induce a sense of panic. Let it be known that a “date” does not necessarily entail dinner out on the town and four hours away from your child. This doesn’t even mean you have to leave your house. A date is simply setting aside some time where the focus is on your beloved. Shut off the t.v. and put away those phones (the killer of all intimacy). It might include a bottle of wine, music and conversation.
If you have been operating like zombies for the last two years, this will feel incredibly awkward and foreign at first. Awkward or not, do it anyway. If it means you just sit there staring at each other, it’s a step in the right direction.
Practice is necessary to find your way back to each other. Next time you do it, you might actually be able to talk. Start slowly if it’s been a while. Putting pressure on yourself is not going to inspire romance. Watching a movie in an upstairs bedroom while our daughter has been cared for downstairs has given us just a little time alone and a breather from everyone else. Be creative and set the intention to give of yourself to each other. Even a fifteen minute walk outside holding hands is better than nothing at all.
- Gestures of Kindness. Take the initiative to let your spouse/partner know that you think of them even in the midst of unrelenting stress. In our early dating years, Tim and I used to indulge in Häagen-Dazs ice cream (caramel cone explosion, to be exact). After Meredith was born, I would occasionally buy a container while grocery shopping. We would share this treat in the one hour we had together in the evening after Meredith was in bed and before the night nurse arrived. Long before parenthood, we used to give each other massages. Tim always loved having his head massaged especially because he is prone to headaches. Sometimes, no matter how bone tired we were, we would spend ten minutes before sleeping to give one another this gift of touch and love. Exhaustion can bring one to tears and yet the rewards of connecting for even ten minutes contributed to our ability to find our way.
Sex. I once had a family relief worker ask if and how Tim and I managed to maintain any kind of sexual relationship. She asked innocently enough and yet it felt like an invasion on the teeny tiny amount of privacy we had left in our lives. I couldn’t write an article on finding your way out of the darkness without including tips on keeping the primal fires of passion burning (I really should start writing romance novels).
First and foremost, there will be periods of time where you live like roommates and sex starts to feel like a thing of the past. If there is one thing that will depress a healthy, vibrant person, it is the slow and painful death of their sex life. Sometimes, though, it is depression that kills your sex drive. Sex is a crucial and vital part of a healthy relationship. The thing is, sometimes it is impossible to give and to get. In those times, it is critical that you still maintain some sort of physical connection. For example: kiss one another good morning and good night without fail, hug often, hold hands, turn off all technology and just focus on each other (see tip #3) and even tell your partner that if you weren’t so bone tired and messed up you would take them to bed and make them howl ;) Sometimes, you have to look after your own needs, and if that involves a vibrating, silicone sea creature from China, so be it. No shame in relieving stress with some self-love.
Logistically speaking, we have had to let go of spontaneity and now plan our romps in the hay. When our daughter is out for an hour long walk with one of her carers, we take advantage of our empty house. You learn to become efficient when time is short and you also learn to be very, very quiet. We also bought a memory foam mattress and decided to forego the bed frame, choosing to have the box spring and mattress right on the floor. This was a game changer. I highly recommend a memory foam mattress. There is a fan in our room, too, which induces white noise and masks "other" noise. My mother keeps asking when we are getting a “proper” bed, but that won’t be happening anytime soon. That memory foam mattress on the floor has allowed for the rebirth of an active sex life.
After a lot of time has passed without any sexual connection, it can be really difficult to get back on the saddle, but you know what, you just have to do it. And if it doesn’t work the first time (stress, hormones, etc. can wreak havoc on a sex life), try, try again and again. You may need to work through tips 1-3 before embarking on this one, but know that it is possible to quench your thirst after a drought.
- Eyes Wide Open. When you fall in love or make the decision to marry, you look at the person you are joining with and think they are pretty darn perfect. When life interrupts the great thing you have going, as it inevitably will, you quickly learn that this person you are with, isn’t all that perfect. In fact, they are far from it and the reality that we are all imperfect beings hits you like a Mack truck. Looking at your partner with open eyes and a fresh outlook, can really help you through the dark periods. Digging a little deeper and finding compassion and giving them your compassion and understanding is one of the ways you will halt any kind of disconnection.
Set the Intention. There is risk involved in finding your way back to one another. If a lot of time has passed since you were the happy couple you originally were, then it is going to take courage. It can even feel easier to remain stuck and bitter. Make a decision that you are not going to be a statistic.
Look at your partner and say to them, “I am in this for the long haul with you. I chose YOU and I love YOU. I know that we are very far apart right now but I am not willing to let this go. I know that on the other side of grief, suffering, sorrow, anger and guilt, there is love and there is “us” and the essence of this beautiful thing we created.” Vow to each other that you will stay right here side by side for as long as it takes to find your way out of the darkness.
The truth is, sometimes you can want something so badly and still it isn’t enough to find your way back to one another. Sometimes, one person is willing while the other has one foot out the door and has already decided that they do not want to put the effort into trying to make it back to a place of harmony and love. You only have control over yourself and how you will conduct yourself in your relationship with your partner.
Fight for it trusting that, in the end, if it all falls away, you can know in your deepest parts that you gave it your all. If you are reading this and your relationship did not survive under the suffocating stress that this experience brings, then tuck these tips into your pocket for when a new relationship is on the horizon.
Tim and I know that we have to remain vigilant when it comes to protecting our relationship. There will always be new stressors and unexpected detours in the months and years to come. We know that we may ultimately outlive Meredith and if and when that time comes, navigating that tremendous loss will be monumental.
Your marriage/relationship will go through some harsh, frigid times, but this does not indicate the end. You see, that is where many couples make one of the biggest mistakes. As soon as things get tough, they call it quits.
We have learned that each time you triumphantly surpass the challenging times, you deepen your intimacy and you get to experience a love that you may have never imagined.
There are gifts that come from the darkness and only when you find your way through the darkness, will they be revealed.
Julie Keon is an HIE mom and author of "What I Would Tell You, One Mother's Adventure with Medical Fragility," a book about getting through the journey of HIE. To find out more about the book, visit: http://www.whatiwouldtellyou.com/.