Parenting a Child with Chronic Illness • Practical Tools

A Blessing in Disguise

Learning to Live Five Minutes at a Time

Parenting children who live with chronic illness, mental illness, chronic pain, or disability challenges almost every decision we make, and we learn to do it all five minutes at a time.

LEARNING TO PARENT FIVE MINUTES AT A TIME

FIVE MINUTES AT A TIME, WE:

• can learn to speak the language of our child’s illness – identifying symptoms, watching for patterns, and keeping running notes of both
• will gain confidence as we speak to doctors, nurses, therapists, and surgeons about our child’s illness, building vital working relationships
• grow in patience as we navigate the overwhelming world of insurance pre-authorizations and denial appeals
• can cling to the Lord, sometimes saying only, “Show me, Lord.”
• forgive those we thought would be there with us through it all

Illness makes many people uncomfortable. Some offer “helpful” advice (“My aunt had the exact same thing. She did/tried/gave up _____ and she’s completely cured.”). Others make a quick comment and sprint away. Some “don’t want to hear one more sad story.” Some just have no framework from which to understand the life we are living.

“But then there are those golden moments when one hospital mom meets another, and without backstory or explanation, you fall into a conversation that feeds your soul, slaking the thirst for deep connection with someone who understands. Those moments are a little foretaste of heaven.” (Cindee Snider Re)

This parenting journey costs us more than we could ever have imagined financially, physically, emotionally, and spiritually. At the moment of diagnosis, our lives are turned upside down and inside out, straining our marriages, friendships, and families, sometimes to the breaking point.

BECAUSE WE ARE PARENTS WHO:

• learn to separate emotion from the needs of the moment, knowing that our child is watching and listening at every appointment
• sleep again and again in our child’s hospital room
• balance appointments, laundry, dinner, school, and medications
• rock and walk our inconsolable little ones, longing for anything to ease their pain
• navigate teen friendships and activities, making sure there are “safe” food options available, and brainstorm less intrusive medication plans for sleepovers, events, and retreats
• watch their young adults grow weaker, sicker, and thinner every day
• have been told “Stop making mountains out of molehills.” “Your child looks fine to me.” and “Are you sure it’s not you who is causing all of this?”
• are buried under a mountain of medical debt
• stand on the sidelines knowing the incredible price our child is paying to join their team on that court, field, pitch, or rink, leaving it all out there, every ounce of what they have because even through pain, nausea, or migraine, it is worth everything it will cost

Every minute, every word, and every breath of this parenting journey is a gift, even when that feels impossible, even through tears, even through utter exhaustion, even when we watch hope spilling from our child’s eyes or slipping from their lives, even when their fear grows more debilitating than their illness, even when our teens’ lives veer wildly off course through self-harm, addiction, or suicide ideation.

God knows

God knew exactly what our lives would look like. He chose our precious children for us. He knew the cost to us, to our marriages, to our friendships, to our jobs, and to our children.

“God didn’t bring you to this place to leave you where you are, but to build your endurance and strengthen your relationship with Him. He promises He will faithfully sustain us through each season of life. God saw this coming long before you were even spoken into existence. He knows the deepest needs of your heart and loves you more than you will ever know. He does all things with intention, and you are no exception. So, take a deep breath – the God of angel armies is on your side.” (Kyle Re)

We are not alone. God is right here in the midst of chaos. Diagnoses can rock our worlds and turn our lives upside down, but one thing never changes – Jesus.

We are not alone. There is always hope. This is not the end of our story – because we can do anything five minutes at a time.

FIVE MINUTES AT A TIME WE WILL:

• care for our families
• raise our children
• love our husbands
• wrap our hands around lukewarm coffee
• rock our children
• teach them to drive
• send them off with our stomachs in knots

Five minutes at a time, we will breathe and do the very next thing.

Together, we will pray for one another and for our precious sons and daughters – because every moment is a gift, one more moment with our precious children.

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