I’m the mother of four boys ages eight and younger and am raising a child with health problems.
One of our little ones is medically complex and diagnosed a few days after his delivery. He spent the first two months fighting for his life in the PICU.
He was a medically induced coma and hooked up to 15 pumps running medication into his little body.
Slowly he got better, stronger, and is now older and currently “within normal ranges.” To say that we have come far is a great understatement.
Together with our little blonde-haired, blue-eyed wonder, we have scaled mountains and crossed oceans. And we would do it all again if it means getting him to where he is today.
Unfortunately, we were not prepared to raising a child with health problems. We had no advance warning, no notification. Just a curve ball that came and hit us upside the head when we had to take him to the emergency room at five days old.
This is common to most families when they start their medical journey. You’re flying at the seat of your pants, unprepared without a road map. You’re fumbling your way through the “system.”
Watching your child struggle and suffer through pain and setbacks is taxing on anyone. (And your relationship with each other and the outside world.)
But light, hope and calmer seas are in sight. Brighter skies aren’t contingent on your child’s health—you’ll find smiles within hospital walls. Once you “adjust to the new normal,” that is when you can find joy in the daily routine.
Even if it involves administering medications around the clock and watching vitals. Seeing doctors and feeling like a medical encyclopedia spewing endless numbers and stats. You’ll have time for warmth and laughter.
Adjust to your “new normal” of raising a child with health problems in five steps:
You must allow yourself time and space to grieve, be sad, get mad, let out all the sadness that you hold deep inside. I tried to hold up a strong front while I sat bedside by my medically paralyzed infant. I held my head up high, stood tall and walked with a purpose, but inside I was weak, crumbled and barely breathing. It wasn’t healthy.
One day the attending doctor came by, sat down and told me “we both know your son is sick. He needs you now and he will need you in the future, so you have to take care of yourself.”
I fooled no one with my stoic façade. I kept it together for the rest of the day, then went back to my room and had a good “ugly cry.” Allow yourself to grieve over the child with health problems you’re dealing with.
Become a student of your child’s medical condition(s).
In my circle of medical moms, we use the term “knowledge is power.” I’m proud of the fact that I never once Googled my son’s medical condition while he was in the hospital. Instead, I found the leading non-profit organization for his condition and used their resources.
Learn to “talk the talk” when you meet with doctors. It can mean the difference between being feeling overwhelmed educated—the latter is empowering.
Find a “medical quarterback.”
We asked our son’s cardiologist if he would be our “medical quarterback.” He was copied on notes from various specialists. He oversaw our son’s medications and guided us toward new specialists as needed.
Having a medical quarterback meant that the pressure was off me and no stone went unturned.
This one is hard for most of us. Well-meaning friends and family say “let us know if we can help” or “we are here to help in any way.” Kind things to say, but chances are you can’t think clearly enough to determine how they can help.
Ask a good friend to coordinate meals or babysitting. Your friends want to help—they may just need some guidance and ideas.
Join (or create) a support group.
A year after our son’s final hospital discharge, I was finally at a place where I needed some real help. I longed to find other parents in the same situation. I needed kindred hearts.
And I learned there weren’t support groups in my area. There were other “under-served” parents feeling the same way.
So I started my own support group with our cardiologist’s help. The group met quarterly for several years, until I finally moved it to a Facebook group.
Today it offers support to local medical moms throughout our county. Creating the group was the best thing I could have done for myself and my own healing.
Where we are now
Today we are six years out from our initial diagnosis and the most traumatic times. We spent countless hours at doctor’s appointments, collecting medical files. We learned what our son’s diagnosis means for him and his future.
Today he is stable, our marriage is stable— we are all stable! Our life is “normal,” or at least what’s normal to us, and I love it. We made it through the worst of times, adjusted to our new normal and learned how to thrive.
Life may have us skipping along this beautiful path for a while, or it may throw us another curve ball. The only thing I know with certainty is that we will navigate whatever challenges come our way. We have come this far. We will always adjust to our new normal, and you will too.
Get more tips on raising children:
- Parenting Tip: Be More Carefree
- These Are the Things Your Kids Will Remember About You
- How I Failed as a Mom… and Why It Wasn’t as Bad as I Thought
- On Choosing to Turn a Bad Parenting Day into a Good One
- Parenthood: Appreciate What You Have
Your turn: Are you a “medical mom”? What are your tips for raising a child with health problems? What has been your biggest health scare, and how did you cope? Let us know in the comments!
Tove Maren is a Danish-American freelance writer and mother of four boys. She reports live from the trenches of motherhood. She writes openly about all things related to life, love, laughter and all the LEGO in her house at Mama in the Now.
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