Through a Child’s Eyes

It’s normal for children to have boundaries. Don’t touch the stove; be careful going down the stairs; look both ways before crossing the street; chew with your mouth closed; pick up your shoes and take them to your room.

But, in our house, our children have to abide by an extra set of rules. No loud sounds in the morning, until my medicine kicks in. Hold my right hand, because I can’t feel the left. Don’t scream in my ears. And, don’t ever, ever, ever hit mommy in the head. 

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Part of me is grateful that my 5 year old knows what to do if there is an “emergency.” Another part of me feels like his childhood is being robbed from him.

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Then, last week, something happened that completely changed my perspective.

I went to the grocery store alone (a rare occurrence). I was bagging ears of corn when a 5 year old boy that I’d never met before came right up next to me and struggled to reach the bags. Just like I would help my own son, I pulled the bag down for him, and held it so he could load 6 ears of corn into it. He smiled, and thanked me “so much.”

Then I turned around and watched him walk back toward a woman who was holding a walking stick; she was blind, and holding the hand of a small boy who looked to be about 2 years old. They had a red wagon full of groceries. 

After he placed the heavy bag of corn into the wagon, I watched as his mom whispered another order to him, and off he went, to the leafy lettuce.

There are so many parallels here. Most obviously, the boys; they were the same ages as my own. I also felt connected to the mom; grocery shopping with 2 boys is hard. Doing it with a disability is even harder! 

Without hesitation, I pushed my cart to the side of the aisle, and walked over to the boy. “What else do you need? Can I help you find something?

He smiled so widely, and said he was trying to find kale. I asked his mom if she wanted organic, and then helped them check every other item off their list; spinach, cantaloupe, raisins, carrots.

When we finished, I said “it’s so nice of you to help your mom!” He shrugged nonchalantly, waved goodbye, and began to guide his mom toward the check out aisle.

I watched them walk away, and couldn’t keep the tears from pouring down my face.

Through that little boy’s eyes, nothing out of the ordinary happened at the grocery store. And, while I’ve been struggling with the harsh reality my kids are facing, they likely don’t think it’s out of the ordinary to be cautious of hitting my head, or play quietly when my head hurts.

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I still hate that my children have seen their mom having seizures, taken away by ambulance, and in a hospital bed. But, they’ve also seen me overcome.

They’ve seen how their daddy stepped up to take care of us when mommy couldn’t, and how family comes together in times of need. They met the doctors who cared for me, and saw how important it is to take care of our bodies. They’ve seen what unconditional love looks like. They saw healing, and they learned compassion.

Everyone needs help every once in a while, and everyone faces challenges. The sooner we teach our children that, the better.

This is our story, and it is not over yet.

 

 

 

 

 

 

Meningiomas and Menopause

I think all of us are equipped with instincts as children that give us hints of who we will one day be. For some, it could be a draw to medicine, animals, science, sports, etc.

When I was a child, I always knew that I would be a career woman, and a mommy.

I was lucky enough to have 2 beautiful pregnancies that resulted in 2 perfect boys:

(They may look similar, but those are actually 2 different babies that both look exactly like their daddy!)

When I was pregnant with our last baby, we knew he would be our last. My husband and I had always envisioned a life with 2 children, and we are beyond blessed to have fulfilled that dream.

Shortly after I finished nursing our youngest baby, I began having seizures that lead to the discovery of 23 tumors in my neurological system and a diagnosis of Neurofibromatosis II (NF2).

After having 2 craniotomies to remove meningiomas, we learned why the symptoms showed themselves so suddenly; the same hormones that created those babies had actually caused my tumors to grow as well.

In hindsight, I’m so glad that we didn’t know of my diagnosis until after I had given birth to those boys. Otherwise, I know that we wouldn’t have them. 

Every time we hear the dangers of pregnancy for NF2 patients, it reinforces how lucky we are to have completed our family… and even luckier that neither of our boys inherited my genetic disorder.

After surgery, we began to consider our options for long term care. My oncologist was the first to teach me that chemotherapy comes in many forms. I’d assumed it would be like what I’ve seen on Grey’s Anatomy; a sickly person with no hair in a cold chair, hooked up to an IV for hours. 

Instead, my first round of chemo is a light drug called Lupron. It is easily given by a quick injection, and works by killing my ovaries, and therefore eliminating all of the hormones from my body. The idea is that we may be able to starve my meningiomas by cutting off the hormones that feed them.

So, in February of 2018, I finished nursing our last baby. And, in February of 2019, I started going through menopause. That’s right; the injections have put me through medically induced menopause at just 32 years old.

Hot flashes. Irritability. Weight gain. Hot flashes. Sleeplessness. Forgetfulness. Hot flashes. Headaches.  Did I say hot flashes?

Thank goodness this Spring in Colorado has been cold enough to help me maintain my body temperature!

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I debated sharing this picture, because if you look closely, you can see a chunk of new hair flying straight up. It is something I am so insecure about; a small, yet ever present reminder of the brain surgery I had just 6 months ago.

But, I’m sharing anyway. Because there are pieces of this journey that are not pretty. There are pieces that do not lie down exactly how we want them to, and that’s okay.

Those are the pieces that remind me how far I’ve come since my diagnosis just 10 months ago, and they continue to motivate me to keep pushing through the inevitable hard days.

This is my story, and it is not over yet!

**To those of you struggling with fertility, those who are unable to have children due to medical complications, and those who have children with genetic disorders, our hearts and prayers go out to you!**