11 Lessons for My Younger Self Caring for a Child With Medical Needs

Parenting can be a marathon. Good thing you’re not a sprinter by nature because slow and steady is going to take you far. This is long-term work. There will be fatigue, lots of hills and valleys and so much excitement and joy if you allow for it. Here are 11 lessons I learned along the way:

1. Please put your oxygen mask on first.

You will cringe when you hear this suggestion because your child can have such demanding medical needs. You may wonder how you’ll ever be able to do this. But trust me, you’ll need so much oxygen during these years. Your “oxygen” may look like mid-day meditation, walks on the beach, the tiniest nap, sitting in your garden, space for solitude, taking a class, a phone call with a friend, a deep tissue massage or just getting out of the house. Your oxygen mask is critical.

2. You’re the expert on your child. Period.

You have fed and bathed her, given her medications and held her after surgery. You know her temperament, her likes and dislikes and you help to hold all of her worries. You take her to school and see her in friendships. Trust your intuition about her providers, the well-intentioned people with the fancy degrees, the array of therapists and those who you choose for her medical team. Please tune into how she feels and how she interacts and ask her for input about these people. Because as time goes on, she is becoming the expert on herself and on her life.

3. Don’t stuff your feelings down.

They ebb and flow. Some days you’ll feel ready, rested, healthy and strong. Other days you’ll feel jealous, resentful and defeated. Don’t stuff the feelings down. (I repeat: Do not stuff the feelings down.) Make space to feel them all in a way that works for you.

There will be so many days that bring you to your knees. There will be days full of unexpected bliss. And days where getting back into bed and pulling the covers up over your head is totally necessary. Allow yourself to feel the depths of the sadness, the unexpected news and the what-ifs.

4. Find other parents who have medically involved children.

Connecting to people who “get it” is such a blessing. You can compare notes, share resources and meet each other in person. Even better, find an organization that advocates for and builds community for your child’s rare disease. If said organization doesn’t exist, then by all means start one!

5. Assemble your team.

This is your inner circle. These are the people who will show up. Some may send love and prayers, others may text you to check in, some will deliver meals to your family and others will deliver all the hugs. Your inner circle will listen, they will love you up, they will come to the hospital, they will ask smart questions. They’re life-savers. 

Love them hard and thank them a million times and then thank them again. Create opportunities to give back to your team and reciprocate these gifts that have been shared with you.

6. Communicate and educate.

Be the squeaky wheel. Ask why. Ask all the questions. Ask for visuals. Ask for notes. Get clarification. Ask more questions. Write things down. Share what you have learned with others. Express your gratitude to the people who are helping you to learn and to better understand your child. Express your concerns concisely when things aren’t working. Be laser focused in your communication.

7. Nurture your relationships.

Choose ways to spend your time that aren’t related to your child and/or her care. Call in your helpers and allow others to care for her. Take a break. Go on a date and love up your spouse. Spend some solo time with your son. Learn a new skill or try out a new hobby. Call a friend for a coffee or wine. Spend time alone and see how it feels. Spend time loving and tending these other crucial parts of your life because where we focus grows.

8. Embrace her gifts.

In the midst of all of the medical stuff that is your “normal,” watch for the magic. See her gifts emerge clearly and effortlessly. Support what she loves and what she wants to do. Encourage adventure. Help her to see her strengths. Say yes (again and again). Encourage her fierce independence. Let her lead the way — she knows where the magic lives.

9. Trust your gut.

You might wake up in the middle of the night and sit up in bed right before she calls out for you. Another time, you’ll wake up and say to your husband, “Something is wrong,” seconds before she texts you from the sleepover to say that her blood sugar is dangerously low.

Occasionally, it’s the feeling of something being not quite right that you can’t put your finger on. And one night you’ll have to page her neurosurgeon from her bed in the ICU at 2 a.m. because the residents in charge aren’t listening to you while her oxygen levels are crashing. Your gut gives you such powerful information. Please listen to it.

10. Tell your story.

Your words and experiences as her mom need to be shared. Give voice to the tales of living alongside a loved one with life-long chronic, rare and progressive illness. Share how you have moved from enmeshment into empowerment over the past 13 years.

Share how you are nurturing roots and wings. Tell the stories of your vulnerable truth, the worries that haunt you, how you choose to live with gratitude and the things you wish you had done differently. Tell the story of how you believe you were chosen to be her mom. Know that your truth needs to be heard.

11. Hold space for hope.

Nurture hope through your witnessing of beauty and by finding bliss in the ordinary. Hold space for hope through your prayers, through your conversation with a higher power and through your belief in the good that exists in the world.

Hold space for hope by expecting the unexpected. Bring conversations about hope into your everyday life. Make space for hope with your wishes made on cupcakes and by releasing milkweed seeds into the sunset. Hope exists everywhere. Noticing it and holding it close to your heart is a gift.

P.S. This is uncharted territory. In case no one has mentioned it lately, you’re doing a really great job.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.