Leap of Faith

I had an MRI Tuesday; a routine, scheduled three-month magical magnetic adventure that’s become a routine event in our lives while simultaneously challenging our emotional and mental stability at every turn.

It isn’t easy for anyone and it’s become apparent how challenging it is for the kiddos. They are getting older and have become more curious with many more probing questions. We are open, transparent and reassuring in our explanations, yet they are fearful and they are scared; so am I.

I understand all too well my perspective, yet I’m not the child with a mother with a brain tumor… that is perspective I will never fully understand. As a mother, it’s simply sad and heartbreaking how this routine, our fucked up normal, and living with this piece of shit, has become such an interwoven part of their young lives and psyche.

I was nearly rendered speechless and felt sucker punched Tuesday morning in the midst of kisses and “have a great day”. Standing in the kitchen gathering lunches, water bottles, bags and keys to head to school, a little voice said to Harper…

“Tell Mommy you love her, you may not see her again.”

It wasn’t spiteful, it wasn’t mean. It was sweet and it was kind. It was quiet and it was gentle.

Because, you see, no matter how many questions we answer and how much we feel we have explained, a deep fear remains. There is sadness, concern and attempted bravery by a young boy. Yet, there is a harsh reality that we need to have more conversations. We need to do a better job to reassure that no matter what, I am coming home after these scans. That regardless of the news, we will be together as a family and we will figure this out.  

So there he stood, a fearful teary eyed boy who had difficulty grasping that if the tumor had grown, his mother would, in fact return home. 

There are so many elements of this journey that have become routine, and I take for granted that what I know and what I experience are often foreign to others. How can I expect anyone to understand what an MRI is like if you have never had one? How can I expect my kiddos not have unrealistic expectations and concern if they have no frame of reference for what it is that I do every three months?

The not so subtle reminder in my kitchen Tuesday morning reinforced to me that I had, in fact, made the right decision a month ago to photographically document my MRI.

The decision had not been made lightly. These are very private moments during a very stressful time. It’s emotional and it is riddled with anxiety. Yet, to contrast all the stress, I have come to feel very safe, almost like a home away from home where the nurse who starts my IV and gives me a hug is also my friend. While my MRI’s are a very private experience, I felt as if I needed to turn the camera lens onto myself.

Aside from the iPhone selfies in a hospital gown, it’s pretty challenging to turn the camera around and tell the story in images. As a photographer myself, I understand the power of images and how they document events better than words.

Mustering the courage to put myself and the entirety of the MRI experience that leaves me weak in the knees, emotionally vulnerable, contemplative and running worst scenarios through my mind, took some faith and a great deal of trust. To be documented at your most vulnerable through someone else’s lens is not easy.  

Yet, I took a leap of faith. My world had collided with Kate Parker’s through our kiddos school. An accomplished and extraordinary photographer (katetparkerphotography.com), as well as a pretty cool momma to boot, I felt comfortable and at ease approaching her to document the event.

We will now have images to add to the chronicle that is this crazy and fucked up normal life we live. There will not only be words to share with the kiddos, but images as well. Hopefully these images will serve to help the boys better understand what an MRI is and what it is that mommy experiences every three months. Hopefully these images will open more dialogue and dispel any unnecessary fears and anxiety that the piece of shit has brought upon our family.  We fear what we do not understand and I hope we can begin to heal some of the wounds that fear has created.

I am grateful for Kate, her eye and her perspective. I am grateful I finally mustered up the courage to take a very private experience and give it some wings and I’m thankful I took a leap of faith. 

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*Additional photos will be posted the Grey Matter Life Facebook page.

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22 thoughts on “Leap of Faith

  1. Hey Jennifer, Appreciate very much your sharing life’s journey and the honestly with which you write.

    I’d also like to thank you for the Billy the Elf diatribe (Comments there are closed).
    I, a father of teenagers did not even discover the Elf on the Shelf phenomena until one week ago. I lead a small group at my church and have couples, mostly in their early 30s and they were just going on and on about this Elf on the shelf thing.

    So, I being a digital immigrant, now knowing how to use a smart phone asked Google to show me images of Elf on the Shelf. I got an eyeful…exactly what Billy was talking about in his letter.

    Please let him know I am appalled just as he is and after viewing some of those images I needed to take a bath.

    Hope you have a Merry Christmas and know that you were prayed for today at 9:26 am EST

  2. Kids are so literal with they are young. The pictures can only help relieve some of their fears and lots of their stress!

  3. I found your blog through the pictures, I follow KateTParker on FB. I do brain imaging research as my FT job but am also a photographer. Running myself as a pilot research subject in march I discovered I also had a brain tumor. I’ve had two surgeries since then and now am being followed like you every 3 months. I have a 3 year old and a now 16 mth old who obviously are too young to understand, they only know mommy had a boo boo and that’s why I had to stay in the hospital. Your posts are inspirational and really speak to me about the challenges ahead, in particular with how this will impact my children. I still haven’t decided when to tell them anything. They don’t know when I have my scans (due to their ages and the fact I work at the hospital so I just get them done before my day starts).

    • I can relate to the challenge of having young kiddos. My boys were 3 and 5 when I had my surgery and it was explained very similarly. Best advice (if you’re looking for any) is to keep an open ear and eye and you’ll adjust your approach and talking points as they grow. Best wishes and keep in touch. I wish you well and continued stable scans. Cheers.

      • Always looking for advice, thank you and same to you! They think having my children caused mine to grow much quicker and that if I don’t have more children I have a good prognosis. Doing brain research I had done a scan 7.5 years ago and the tumor wasn’t visible then although the hydrocephalus was starting (just not enough for me to pursue more scans at the time) and now my tumor is 2.5 cm in diameter.

  4. Fantastic piece, as always. And great idea to try to capture the process in pics. I bet it will help your kids a lot more than they ever say. With 2 kids under 8 myself and just having had my latest MRI yesterday, I can totally relate.

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