Marriages Under Threat--Part 2. How To Offset The Challenges of Caring for a Chronically Ill Child
The following is the second part of a talk the Professor and I gave recently on how to offset the challenges of parenting a chronically ill child. These are just my thoughts drawn from experience after almost 23 years of marriage and the last 6 years of severe sleep deprivation. It's not been easy but we have found tangible and constructive ways to deal with the needs of our children and enjoy being together.
How does a union survive the unique pressures of a chronically sick child?
1. A mandate for love. So here's the bottom line for me. There are so many lessons on love. So many cute self-help quotes that are supposed to go some way to making one feel better in the moment. But what happens if you really can't stand watching your child suffer, a reality that has been going on for months, even years? What happens if you think about walking away because you can't bear it? Well, I learnt some years back that if I truly loved someone, I had to bear it. Because"love bears all things." I didn't rely on my feelings, or desires, but felt compelled to see it through and not act on my doubts and fears. Some days that has been very hard. But this is what bearing in love means for me and for our marriage. It isn’t a fluffy quote or a cosy ideal, it’s a decision that costs.
2. Honesty must work on every level. We talk honestly and openly about our every aspect of our lives, and how are dealing with personal struggles. We don't try to offer glib pep-talks or dismiss the others' fears or concerns. Neither do we expect each other to be in the same place. The truth makes us vulnerable and exposes us for who we really are but being honest is better than dealing with months of denial.
3. No blame. One of us carries the gene for Narcolepsy and one of us took Mathilda to have the vaccine shot that precipitated her Narcolepsy back in 2010. Blaming each other for things that were out of our control could be very destructive and limits how far we can move forward.
3. Forgiveness. There's no perfect marriage, and no perfect partner within a marriage. Each of us has failed the other over the years. Letting go of past issues and present faults, as well as practicing apologizing has helped us accept each others' weaknesses. Our kids hear us say sorry a lot.
4. Positivity/Seeing the good in our situation. It's not all bad. Really it isn't. The many hours we are awake at night after giving Mathilda a dose has given us large blocks of time to talk, plan the day, and get on the same page. And, make tea. These are generally constructive hours and I wonder if we will look back at these times with gratitude.
5. Keeping things special. Most Friday evenings the Professor and I head to Trader Joes, buy our favorite meal (usually steak or salmon) and go home and light some candles. Because it's hard (and expensive) to get out for an uninterrupted evening in a restaurant, our date night has become something we look forward to. That hour goes a really long way for both of us and the children respect the importance of these evenings.
6. Respite care. Occasionally on weekends we get away to recharge, rest, and connect. We have had several amazing people who are prepared to look after the kids and pets, and be up with Mathilda in the night to do her doses. What a gift it is to travel out of town for a night or two and sleep, walk on the beach, and read. Getting two nights sleep in a row sets us for the next week and leave us with a more balanced perspective.
7. Communication (both deep and trivial). Sometimes our talk is heavy, but mostly its pretty light--the every day stuff of life. Several times a day the Professor checks in with me from work. It might just be a text or quick chat depending nohow busy we both are, but there is usually some kind of affirming--concerning what the other is doing, and how amazing it is to be keeping all the plates spinning when exhausted. On difficult days I signal an SOS which comes in the form of “I’m struggling today" or "I need you.” We've learnt to drop trivial commitments in order to support the other because somewhere along the way we both recognize that if things are going pear-shaped at home, the rest of our lives might unravel.
8. Teamwork. Fortunately we have a brother/sister model for marriage. When one of us needs more sleep, the other steps in to do an additional night shift or two. Many times over the past 6 years we have done this for each other not always aware of the fact that we are working as a team. We have learnt to recognize the signs of extreme sleep deprivation in each other, which manifests itself differently in each of us. The Professor feels like he's coming down with 'flu--all the symptoms without the fever. I just get weepy. At such times as these when one of us if falling, the other becomes the safety net.
9. Acceptance of the others needs and differences. We try to allow space for individual time out. It might be that one of us stays home while the other goes to the gym, a coffee shop, or whatever. Sometimes it means allowing early bedtimes and naps or keeping the social calendar light so that weekends are a time to recover from work and recoup. The Professor and I try to respect that we have different needs at different times and that they shift from week to week. This allows us to build togetherness at the same time as creating space for autonomy.
10. Choosing relationships that foster support and a sense of fun. We have found it important to spend time with people who build us up, make us laugh, and respect that we don't always want to talk about Mathilda. Humor is huge and provides a sense of relief. When we first came here, our family was invited out for an evening at a friend's house where we were able to really relax and be ourselves. On the way home Elliot said in the car that he had an amazing time. (What British 10 year old wouldn't love their first pool party?) He said it was the first time he'd seen us laugh in several years. I'll never forget that. Since then, and as Mathilda's health has improved we allow time for engaging in other people's lives and hearing their issues. Our capacity for interacting with others, reaching out and hosting has reduced dramatically but we still need relationships that foster a sense of fun and support.
13. Keeping hope alive. We've always been goal oriented people, so it makes sense to keep talking about our aspirations even if they seem unrealistic. For the most part we talk about dreams for the future like traveling together whilst understanding that things change and there are no guarantees. This gives us a combined purpose as we still try to “dream big.” Dreaming signifies hope, and hope is crucial.
15. Living in community. This is where our friends and family have been a life-savers. Whilst not everyone “gets it” (and we don't expect that) our community of friends in Pasadena have been invaluable. Some people help us out with car pooling, especially when we need to pick up our teens late at night, others with the school run when pick-up clashes with doctor's visits. I could go on and on with examples of how we feel part of something bigger than ourselves because of day to day support. Without our community, life would be a lot harder.
With grateful thanks to the Professor and Ally and Brian Lee who have provided us with respite care. Thanks also to Rebecca and James Farlow, Alan and Virginia Christman, and many other friends at Knox, Fuller Seminary, and Saint Monica Academy who have done the same in helping us care for our children here in LA.