5 Healthy Ways Disability Parents Can Manage Grief

Two days before Christmas, one meeting would change my life forever. My husband, Todd, my mom, and I were the only ones in the waiting room. The geneticist was coming in on her vacation day to meet with us. Dr. Sampson walked in and didn’t waste any time before beginning.

“Your unborn baby has a severe chromosomal deletion called Cri du Chat Syndrome or 5p Minus. The baby likely will not make it to the delivery. Most fetuses with this syndrome don’t even make it past the first trimester.”

I look away from the doctor. Todd scoots closer to me, squeezing my hand.

“If by some miracle the baby does survive, she’ll be profoundly intellectually disabled and will likely never walk or talk. She can have any number of severe medical problems including heart, stomach, feeding, and breathing problems. Any of her organs may fail. We just won’t know until she gets here.”

The blunt news slowly spread throughout every fiber of my being. The room was shrinking, the gray walls closing in on my hope.

I feel sick. I can’t move.

We sat in shock, blindsided by the mound of crushing news the doctor had just dropped on us. We managed to hold back tears until we were out of the office. Devastation crushed my heart.

Oh God, I can’t breathe. Help me breathe.

Continual Sources of Grief

The next week, I realized I was entering the process of grieving the loss of a healthy baby. I thought I’d get through the mourning period then move on with my new life as a disability mom.  Bethany Grace did survive, bringing new joy into our lives. But what I didn’t realize was that I was just beginning my journey of chronic, long-term grief.

When we have a child with either expected or unexpected disabilities, medical complications, or mental health disorders, waves of painful emotions can come daily or knock us over without warning.

The day Bethany Grace entered middle school this past Fall, I felt really down and irritable. It wasn’t until later that afternoon that I wondered why. Then I thought about the pictures that I had scrolled through on social media. My friends had snapped selfies as they helped their daughters decorate their lockers or pick up their schedules. I cried.

I will never experience those typical milestones with Bethany Grace.

Yet, I’ve learned healthy ways to manage my grief that I use myself and I teach others to use.

The 5 C’s for Healthy Ways to Manage Grief

1. CONNECT with Others

“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us” (2 Corinthians 1:4).

What’s usually your first response to pain? My instinct is to coil up inside myself. It can be difficult to let other people into our grieving process, especially if we fear that they may not understand. But emotional pain and hopeless thoughts thrive in isolation.

We’re not meant to suffer alone. There are other people who can help support us. They’ve been comforted, themselves, and are further along on their journeys.

Social connection is critical. Attending a support group may be one of the most helpful steps we ever take in processing grief, receiving support, experiencing validation, and managing stress. In a group we will also have the opportunity to comfort and support other parents. If you’re not able to find a group in your area or don’t have respite care, then even joining or attending a group online can make a tremendous difference. Read more about how support groups help special needs parents.

2. CRY Out to God

“The Lord is close to the brokenhearted; he rescues those whose spirits are crushed” (Psalm 34:18).

Studies show that caregivers who rely on their faith for strength are more resilient and have improved mental health. I learned the hard way that it’s critical to address spiritual struggles and questions as soon as possible. The longer I focused on my loss and watched my daughter suffer, the more angry and bitter I grew. How could a good God let this happen to me? Allow my daughter to suffer like this? I rejected the strongest help and deepest comfort in my life—Jesus, our Wonderful Counselor.

As hard as it may be, it’s healing to begin to process with God in prayer our:

• Spiritual doubts
• Hard questions
• Honest feelings

Then, there will be no barrier to receiving our greatest comfort, strength, hope, and peace.

3. CARE for Yourself

“God is our merciful Father and the source of all comfort” (2 Corinthians 1:3).

Care for yourself just like you would console a hurting loved one. Be tender, supportive, and accepting of your own grief and emotions. Be in tune with yourself. If you begin to notice a shift in your mood, a wave of sadness, or any other difficult emotions, take my Five “R” Steps©:

1. Reflect: Think back and identify a situation that might have prompted these thoughts or feelings.

2. Reassure: Validate yourself. It makes sense you’re feeling this way.

3. Release: Give yourself permission to feel your hard emotions. Cry if you need to. Let yourself just be for a bit of time.

4. Reframe: How can you look at your circumstances differently? Pray about your thoughts and emotions.

5. Return: Then go back to being present in your day focusing on one moment at a time.

“God blesses those who mourn, for they will be comforted” (Matthew 5:4).

Remember, “God is our refuge and strength, always ready to help in times of trouble” (Psalm 46:1).

4. CALM Your Emotions

“Give all your worries and cares to God, for he cares about you” (1 Peter 5:7).

I’ve written several other posts on healthy ways to calm and cope. Here are just a few tips for how we can help regulate our emotions when we’re feeling overwhelmed:

1. Observe your surroundings and just be in the moment

Close your eyes. Take a deep breath in through your nose. Then slowly exhale through your mouth. What do you hear? Smell? Feel beneath your feet or with your hands and skin? Now, open your eyes. What do you see? Simply be in your environment in the present moment. Take another deep breath, then go back to what you were doing.

2. Go for a walk or do some type of physical activity

Even just ten minutes of engaging our muscles and focusing on our bodies can help lower the intensity of our emotions. Try mindfully stretching, focusing on one muscle group. Take deep breaths. Just be in your body.

3. Tense and relax your muscles

Ball up your right fist and squeeze as hard as you can for five seconds like you’re draining all the juice out of a lemon. Then suddenly drop the lemon. Repeat with your left hand. Tense each muscle group throughout your body then suddenly relax. This exercise helps your brain and emotions calm down.

Get my guide for quick coping strategies.

5. CHOOSE Gratitude

“Give thanks to the Lord, for he is good! His faithful love endures forever” (Psalm 118:1).

I know from experience that it can be difficult to think of things for which I’m grateful when I’m grieving. But hope and joy arise when we look up and appreciate what we do have at this moment in time.

Yes, it hurts that Bethany Grace will never be going over to friends’ houses for sleepovers; And, she loves life and enjoys playing with her family and friends when she’s able to. Yes, we spend a great deal of time at doctors’ appointments and in the hospital; And, today she’s able to be at home and healthy as possible.

I’ve learned to be thankful for the little moments and simple blessings.

What’s your “Yes, And” statement?

Practicing these strategies may not resolve our grief or make it any less painful. These exercises will, however, help us cope in a healthy and resilient way. These skills can help prevent grief from growing into a more serious mental health condition or hurting our relationships with others.

When to Seek Professional Treatment

If you ever have concern about your mood or any other symptoms, don’t wait to seek help. The sooner you receive treatment, the better your outcome will be. These are a few of the red flags that indicate you need to go for a mental health consultation:

1. Your symptoms or mood begin to negatively impact your daily functioning and quality of life.
2. This situation lasts longer than two weeks. 
3. Someone else expresses concern about your mood and symptoms.

Learn more about how to tell the difference between typical caregiver chronic stress and grief from a more serious mental health condition.

Find a therapist in your area.

What have you found helps with managing your grief?

Share your ideas in the comment section below.

I pray that you experience comfort, hope, and peace on your journey to healing.

Blessings,

Kristin

If you are in crisis or worried about your safety, call the national suicide prevention lifeline at 800-273-TALK (8255) or go to your nearest emergency room.

*The contents of this article are intended for informational purposes only and not a substitute for seeking professional mental health or medical advice.

All Scripture references are from the New Living Translation

Kristin Faith Evans, MA, MS, LMSW

Kristin is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and emotional healing. As a Licensed Masters Social Worker and with her Masters in Christian Education, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com