Hand to Hold's Official Blog: Written by Parents for Parents

Hope During a Medical Crisis

I was keeping hope that it would be good news; our family didn’t need another medical crisis. But when the doctor called that day, my heart sank. It isn’t a good sign to get results from a brain MRI almost immediately.

People told me to “stay positive” and “be thankful.” But you know what?  “Staying positive” didn’t seem possible for me. We had just gotten devastating news and I was afraid.  I wanted to scream “how in the world can I be thankful for a brain tumor!?

Jaxson, my sweet and hilarious little spit-fire, had gone through so much already in his short life. He was born 4 months early at 23 weeks gestation and spent 93 days in the NICU. He suffers from Chronic Lung Disease, has had six surgeries, and is enrolled in physical, occupational, and speech therapies.

And now he was facing possible brain surgery and chemotherapy.

I was defeated and I had a difficult time keeping hope.

Keeping Hope When It Doesn’t Seem Possible

Keeping Hope Image by: pippalou

Keeping Hope Image by: pippalou

We were not expecting our son to have to fight so hard to live. We weren’t prepared to handle the statistics or the medical diagnoses or to have a child in the hospital for months or to hear the words “brain tumor.”

But even in the midst of all that, lyrics of one of my favorite Bob Marley songs kept popping into my head:

Rise up this morning, smiled at the rising sun… /
Don’t worry about a thing, ’cause every little thing is gonna be alright.

Well, we were worried. And you better believe we didn’t think that “every little thing was gonna be alright!”

But then it dawned on me…

Even if every little thing is not alright, there are still a lot of other things that will be.

I thought back to our NICU stay. My son had a doctor that gave us “Prayer Points” for the day.

The Prayer Points allowed us to focus our thoughts and worries on small, short-term goals instead of being swallowed by a sea of “what ifs.” They helped us keep our eyes on the positive: a successful feeding, weaning oxygen, weight gain, a smile from our baby.

Most importantly, the Prayer Points gave us hope.

Some days were much harder than others, but we dug deep. We leaned on each other and our support system. We gave ourselves grace. We trusted our Guardian Angels.  We did it: we kept our hope. We “smiled at the rising sun”… and I know we can do it again as we are coping with the brain tumor diagnosis.

When I am struggling, I try to remember these things:

  • I can be grateful for what I have and scared for the future at the same time.
  • I can hear statistics that paint a not-so-bright future for my preemie and still have hope.
  • It’s possible to find a silver lining in every situation – and in my experience, the harder it is to find that silver lining, the brighter it will shine once it’s discovered.
  • I can be thankful when it feels like there’s not much to be thankful for.

How do you keep hope during a NICU stay or medical diagnosis?

Are you thankful for the nurses who cared for your child? The surgeon’s skilled hands? The peace of being able to hold your baby? The good coffee from the coffee shop next door? Have you turned your NICU stay into something positive by volunteering at the hospital or starting a non-profit to help other preemie parents learn to deal with grief and loss?

Write your answers in the comments; maybe you can help inspire another NICU family to find their silver lining.

We have each other. We have hope.

Andrea Mullenmeister About Andrea Mullenmeister

Andrea Mullenmeister (MN) is a stay-at-home-mom for a little adventurer. Jaxson decided to meet the family while they were on vacation! After a terrifying helicopter ride, Jax was born at 23 weeks 3 days weighing 1lb 8oz. He suffered from severe ROP, humongous inguinal hernias, Bronchopulmonary Dysplasia and severe hyspospadias. After 93 days in the NICU, Jax came home. He is a happy and mostly healthy toddler with only minor issues. Andrea volunteers on a parent advisory council for "Jax's" NICU and shares their story to give other parents hope. She writes about the life of her micropreemie at An Early Start. You can also follow her on Facebook, Twitter, and Pinterest.

Comments

  1. Dear Andrea, What beautiful words and wise perspective. Thank you for sharing such light and hope on those days when it seems so difficult to find. Thinking of you and your strong little man.
    Amy

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