New Medical Moms, Listen Up!

I am the mother of four boys ages 8 and younger. One of our little ones is medically complex and was diagnosed a few days after his text-book-delivery via scheduled c-section. He spent the first two months fighting for his life in the PICU, in a medically induced coma and hooked up to 15 pumps running medication into his little body.

We got a crash-course in how to adjust to life with a medically complex child and learned how to find joy in our “new normal.”

(This post was originally written in 2015. I am re-sharing the post today, as the tips are still needed by newly diagnosed families, more than ever. The ages have not been updated, but the information is 100% accurate.)

Slowly (ever so slowly) he got better, he got stronger, he is now older and he is currently “within normal ranges” for his condition. 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.

>>>>>  Read the story that started our medical journey – and the four words that will change the way YOU parent! <<<<<

Unfortunately we were not prepared to have a medically complex child. There was no advance warning, no notification, simply a curveball that came and hit us upside the head when we were told to take him to the ER at five days old.

Starting Your Medical Mom Journey

This is unfortunately what happens to most families when they start their medical journey. You are flying by the seat of your pants, unprepared without a road map. Fumbling your way through the “system” all the while you watch your child struggle, suffering through pain and setbacks, offset by the occasional improvement.  This is taxing on anyone, especially the parents (and your relationship with each other and the outside world).

But there is light… there is hope… and there are calmer seas in sight. Brighter skies are not solely contingent on your child’s health – there are smiles to be found within hospital walls – there really is.

Once you “adjust to the new normal” is when you can find joy in the daily routine, even if it involves administering medications around the clock, watching vitals, seeing specialists and feeling like a medical encyclopedia spewing endless numbers and stats about your child.

There is time for warmth and also laughter.

Adjust to your “new normal” in five steps:

• Grieve!
  • 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, I stood tall and I 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 REALLY 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 at the Ronald McDonald House and had a good “ugly cry.” Give yourself the gift of grieving.

 

• 
• Become a student of your child’s medical condition(s).
  • In my circle of medical moms we use the term “knowledge is power”! With that said, I am 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 my son’s specific condition and used every single one of their educational resources.
  • Being able to “talk the talk” when you meet with doctors can mean the difference between being feeling overwhelmed or educated – the latter is really empowering.
• Find a “medical quarterback!”
  • We specifically asked our son’s cardiologist if he would be our “medical quarterback” (aka care coordinator). He was copied on notes from all the various specialists, he oversaw our son’s medications, and guided us towards new specialists as needed.
  • Having a medical quarterback at the time meant that the pressure was off me and that no stone went unturned.
• Accept help!
  • This one is hard for most of us, especially because well-meaning friends and family say “let us know if we can help” or “we are here to help in any way.” Those are all really kind things to say, but chances are that you can’t think clearly enough to determine HOW they can help.
  • Ask a really 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. I quickly learned that there weren’t any support groups in my area, which led me to believe that there were other “under-served” parents feeling the same way.
  • 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 which today is offering 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.

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 and learning 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 is 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.

>>>>>  Read the story that started our medical journey – and the four words that will change the way YOU parent! <<<<<

Life may have us skipping along this beautiful path for a while, or it may throw us another curveball – 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!

(P.S. I updated this post in 2019 and I am thrilled to let you know that our son is STILL stable. We, as a family, are well-adjusted and living our best “new normal” lives. Our “normal” and our reality may look different than so many others’, but that’s where getting support from other medical moms has been a sanity-saver for me.)