There Is No Right Way for Caregiving Parents to Feel

by jphilo | May 18, 2021 | Different Dream, Encouragement

There Is No Right Way for Caregiving Parents to Feel

There is no right way for caregiving parents to feel. Those wise words from guest blogger Laura Spiegel would have comforted me after our son’s diagnosis. Today she’s here with words to encourage you to name your feelings and to experience the miracle your child is.

Someone once said that “the only constant in life is change.” How fitting for a week of unexpected news. A loved one is ill, and I’m once again reminded that health is not to be taken for granted. None of us knows what lies ahead, and our bodies, sleek machines though they be, are not infallible. They never professed themselves to be. It’s we, in our arrogance, our busyness, who simply forgot.

Many of us parents know this well. As we dream of our future families, the warm bundles of love that we’ll cradle in our arms, we don’t typically envision pressing medical needs. We pass the local children’s hospital in just that – passing – too busy navigating our playlist to give it more than a second thought. We see fundraisers on late-night TV and videos of friends-of-friends on social media and experience a sharp intake of breath. Followed by the quick relief that it’s not us. Not our children. Not the loves of our lives.

Until it is.

Eight years ago, I was entering my final trimester. I was knee-deep in pink onesies and woke in the night paralyzed by the myriad of nursery color choices. Were the purple walls good enough, or should I give myself an extra kick and make that teal happen? My husband and I landed on a name. A beautiful, classic name that honored a beloved family member and was music to our ears. Our baby’s heartbeat was normal, her growth rate expected. We joked how our second time around, nothing could throw us for a loop.

Five days after our daughter was born, the pediatrician alerted us to an abnormal blood test result. Shortly after, our little girl was diagnosed with cystic fibrosis (CF).

We.

Were.

Thrown.

For.

A.

Loop.

Our daughter is a miracle. She tells the wildest stories, and when she laughs, her face opens up like the sky. She is a gentle friend and a sometimes hell-raiser. She runs the soccer field like there’s no tomorrow, feeling bashful when she kicks the team’s first goal of the season. Before I’ve finished flipping the jigsaw pieces over, her puzzle is almost finished. She dresses in my clothing, draws whiskers on her face, and pretends to be a high-heeled cat lady who teaches gym class. Class starts at 10 PM sharp, just after bedtime.

Science and medicine have progressed big time since our daughter was born. Any day now we expect the FDA to approve a game-changing medication that has done wonders for adolescents and adults with CF. The day our daughter takes that first pill will be the third happiest day of my life. It will be the start of a new path in her healthcare journey. A hopeful path. One that marches toward the sun.

To all the moms and dads out there who are on a similar ride, know this. There is no one right way for caregiving parents to feel. Devotion, ferocity, protectiveness, uncertainty, fear, persistence, hope. All have a place on your journey, and it’s okay if your feelings are tangled up together or if they swing from one side of the universe to the next on any given day. Our bodies aren’t machines, and neither are our minds. Our emotions have their own agenda, and there is no one right way for caregiving parents to feel.

You are doing the best you can. Your heart swells with a love you never knew you could feel. You advocate with a strength you never knew you had. You hope beyond your wildest of dreams.

And that life you had envisioned once upon a time?

Sometimes, when you think of it, you’re sad. You grieve what’s not to be.

Sometimes, when you think of it, you laugh. What Pinterest world were you living in?

But mostly, when you think of it, you smile. For this life – this love – this gift — is sweeter than you’d ever imagined.

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Laura Spiegel spent 12 years at the world’s largest biotech company, partnering with professionals and care teams to help people with special needs and disabilities lead full and happy lives. In 2013 her daughter was diagnosed with cystic fibrosis. Laura now hosts Paint Her in Color, a website that offers emotional support to parents of children with special medical, developmental, or behavioral health care needs. When she isn’t reading, writing, or soaking up time with her husband and kids, Laura can be reached at Paint Her in Color, by email at laura@paintherincolor.com, and on Facebook and Twitter.

Author Jolene Philo

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Making Every Day a Great Mother’s Day, Part 2

Making every day a great Mother’s Day is a priority for guest blogger and mom of 3 kids with special needs, Heather Johnson. In her previous post she shared the deep loss that led to her new perspective. Today, she’s here with ideas she’s discovered that go a long way toward making every day a great mother’s day.

Today is the day after Mother’s Day, 2021. Tomorrow, May 12, 2021 is the nineteenth anniversary of my mom’s passing on Mother’s Day in 2002. She was 65. I’m nearly 62. The older I get, the more Mother’s Day has become an historical marker reminding me that it’s my job to mother myself well, not only for me but for my kids, even now that they’re grown. The following practices have helped me survive and thrive, especially when exhausted physically, rubbed raw emotionally, and wondering spiritually what the future will hold for our kids with special needs.

Physical Health

I eat a healthy diet 90% of the time and eat whatever want 10% of the time. Remember, rigidity isn’t healthy! Besides, who can live without a daily dose of chocolate? (I always have a hidden stash of Dove chocolates and savor one every day which keeps my sweet tooth at bay.)

I exercise daily with a combination of aerobics, stretching, and strengthening/toning. Finding something enjoyable is most sustainable. For me, it’s speed-walking 2 miles a day (30 minutes), doing some sort of yoga at home (20 minutes) and working all muscle groups with free weights (10 minutes). I break it up into three sessions and often multi-task. One great combination is listening to an audiobook while walking.

Mental Health

As a former mental health therapist, I’ve counseled people about the connection between thinking, feeling and behaving. I practice (and I do mean practice) what I teach. First, I practice checking my feelings (glad, sad, mad or scared) without self-judgment. I examine and sometimes challenge the thinking that causes those feelings, and choosing helpful behaviors.

Second, I practice reminding myself that I can only control myself. Others are in charge of themselves. I practice recognizing what I can and cannot do and learn to let go of what I can’t change.

Third, if you ever get to a point where depressive/anxiety symptoms are chronic and all other attempts at healthy lifestyle don’t help, seek professional help. I have been in therapy off and on throughout my adult life and also have taken medication. It’s ok to do what you need to do to improve and sustain your mental health.

Spiritual Health

Our souls need care, too. What centers you, brings you balance, brings you peace that lasts? For me, it’s my relationship with God. I find guidance and comfort in God’s word—the Bible. I read passages with promises regularly and hold them tightly as the lifeline they are. God never promises an easy life, but God does promise a fulfilling life when we trust him and walk in his ways.

So, what about you? What can you do about your physical, mental, and spiritual health to start making every day a great Mother’s Day? I suggest you start small and easy. Write down your goals (weekly, monthly, annually). Mark your progress. Celebrate every success, no matter how small. If you fail, that’s okay. Get back on track. Stay positive. You can do it! Progress is key, not perfection. Do it for yourself and for your kids. Life is a long-haul so make the journey as enjoyable and healthy as possible.

Now, how about a little piece of Dove chocolate?

Part 1

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Heather MacLaren Johnson and her husband have three kids, all five and under when adopted from Russia. Now 29, 27, and 22, all need regular help with their multiple, permanent, invisible disabilities stemming from prenatal exposure to alcohol (FASD).

Heather has B.S. in Education and a doctorate in Clinical Psychology. She is the author of Grace, Truth, & Time: Facilitating Small Groups That Thrive and has published personal essays in The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength (Kregel Publications) and Your Story Matters: Finding, Writing, and Living the Truth of Your Life (NavPress). She’s writing a memoir about her family’s journey through hidden disabilities and mental illness to encourage others to greater intimacy with God and each other through times of desolation and lament.

Heather and her husband of 27 years live with two horses, two dogs, two barn cats, and a bunch of silk plants she just dusts. Heather writes and photographs at www.truelifewithgod.com.