I have been the mother of a child who is medically complex for roughly 20 months, since my daughter’s extremely premature birth altered the course of my life in ways I never could have imagined in my wildest, most outrageous dreams. I know I’m still at the beginning of this journey, and in that aspect probably ill-equipped to compile a list of caregiver stress management strategies for other parents walking this crazy road of complex parenting. But, for my own benefit as much as yours, I’m determined to give it a try.
The list below derives from my own limited experience, advice I’ve been given from more seasoned complex parents, and good, old-fashioned online resources. The items below are not listed in any particular order. Take what seems useful and leave the rest. And if you have other strategies to share with the community, please comment.
1. Read Welcome to Holland. If you’re anything like me, it will give you comfort for a time. When that time passes, and you’ve come to resent windmills and despise tulips, read this poignant parody – Welcome to Holland . . . Now What? – and know you’re not alone.
2. Take a small amount of time (no more than ten minutes) each day to feel sorry for yourself and your child. It’s inevitable. Feel it. Cry if tears come. Wish things were different and curse the unfairness of it all. And then leave your sorrow be. Remember the things you’re grateful for, list them in your mind, and hold them close to your heart as you navigate the challenges of the day. Gratitude somehow eases heartache.
3. Be the best parent you can be. There is comfort in knowing you’ve done everything you can for your child who so sorely needs you. On days you fall short, and of course there will be some, forgive yourself and commit to do better. I like to set realistic daily goals that, if accomplished, will make my daughter’s life happier. For example, I’ll resolve to try a new activity together, go somewhere we’ve never been before, research new treatments or scan clinicaltrials.gov for cutting edge research opportunities, give her a long massage or take her for a walk on a beautiful day. There are few things more satisfying than loving your child. Do it well – it will make you feel good.
4. Laugh. If nothing seems funny, try an essay by David Sedaris or my all-time favorite, Sara Barron. We all have time for a good, hard laugh each day. In the midst of the struggle, laughter is a reliable and therapeutic release.
5. Make as many of your non-medical caretaking responsibilities as convenient as possible. Order groceries online. Use Amazon Subscribe & Save for monthly household necessities. Ask friends to come over and fold laundry or wash dishes or clean out the fridge. Take some time to find out what community resources are available and take advantage of everything out there that makes your life easier – meal delivery, toy lending, ride-sharing, respite care. You need it. That’s why it’s offered.
6. Indulge yourself in the way that makes you happiest. For me, sneaking in a powernap or a hot bath or escaping for an hour into reality TV feels so luxurious. My husband prefers a workout, a good podcast, or coffee with friends. Your time is so limited and your needs so infrequently indulged. It’s okay not to Clorox the door knobs while your child naps. You deserve to be happy, too.
7. Meet other parents of children who are medically complex, whether online or in real life. Ask them questions. Share your advice (when asked for it, of course). Listen and vent and pray and celebrate and commiserate. Freely accept the generosity of others, and always, when you can, pay the goodwill forward. Of all the groups I’ve ever belonged to, this is the one I’m proudest of. Parents of children who are medically complex are smart, resourceful, helpful, and above all, kind. Our community is remarkable. Be involved so it remains that way.
8. Keep up with family and friends. The experience of caring for a child who is complex can be isolating. No one who hasn’t done it can fathom the stress and worry and excessive demands of the job. Often, well-intentioned efforts to relate or offer support seem demeaning and insensitive (and completely disconnected from reality), even if the sentiment is sincere. And while you’d never wish your child’s struggles on another and you’re grateful for the good health of those you love, watching other children thrive while yours suffers is gut-wrenchingly painful. So it is normal to want to hide from your friends and family, to stop returning calls and emails, and to pass on events and celebrations you once looked forward to. But don’t. You need the people who know and love you best. Be as honest with them as you can be about what you’re going through and forgive them for all of the stupid things they will inevitably say. You can lose yourself in caring for your child who is complex. Maintaining relationships with friends and family tethers you to your identity. And people have an incredible way of rising to the occasion. Don’t be a stranger.
9. Take days off, or at least parts of days, on a regular basis. Do things totally unrelated to caregiving like going to the movies or the beach or a fancy dinner. Get away for a while – physically and mentally. And don’t let caregiving prevent you from checking items off your bucket list. Live your dreams as best you can.
10. Read about how others have learned to cope. A great place to start is Complex Child’s collection of articles on Caregiver Support and Coping.