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First Comes Love, Then Comes Marriage, Then Comes a Baby With LGS

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First Comes Love, Then Comes Marriage, Then Comes a Baby With LGS
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Lucky 7/11

My husband and I just celebrated our “7/11”: seven years married and 11 together. We often receive props for being the “model couple.” In our circle of friends, we have been together the longest.

I take pride in the fact that we are where we are today because we did it together.

However, as flattering as it sounds to be commended by our friends, I always tell them they really have no idea how hard it is to be together and of the conflict that happens behind closed doors.

It wasn’t always this way. Not until the seizures started …

Light in a time of darkness

In January 2014, my husband and I were newlyweds. My husband’s best friend had tragically passed away. At 23, it was far too soon and signaled the beginning of dark times.

We weren’t planning to have children at the time, but something told us it was right. That our little one would be a light in a time of darkness.

When we found out he was a boy, we decided to name him Brian Glenn Solka. Brian, after his dad, and Glenn, after his dad’s best friend.

Those eight months after Brian Glenn was born were the most blissful months of our marriage. A light he truly was and still is.

Stages of grief

I thought it was enough to adjust to being parents of an infant.

The powers that be decided to throw not one, but two wrenches into our young, blossoming marriage.

When our son was 8 months old, we were not only grieving the loss of a friend, but also the diagnosis of our son, our light, with a rare disease.

In the beginning, like yin and yang, we treaded waters naturally by alternating our highs and lows.

We were able to maintain this balance until Lennox-Gastaut syndrome (LGS) tightened its grip, threatening everything we worked so hard for, threatening to put out our little light.

To this day, I continue to struggle with the unanswered question of why the seizures began, the feeling that regardless of our intentions, we were spited, the feeling that it is my fault for not noticing and taking him to the hospital as soon as we noticed the infantile spasms symptoms, and the emptiness that comes with knowing we’ll never live to see the hopes and dreams we had for our son because LGS ripped them away.

We hardly, if ever, reach “acceptance.” Constantly cycling through the other four stages of grief is maddening.

Men are from Mars, women are from Venus

Recently, it seems as though we’ve lost our balance and struggle to be yin and yang.

Because we are left with little to no options for respite, we have to sacrifice a night or two alone with the kids to let the other enjoy some time alone or with friends. Often, it will be my husband who goes out to jam with his friends.

My husband has always been the yang of the two of us. He is the go-getter and makes things happen. Nothing can get in the way when his mind is set. Bullheaded, like a typical Aries.

I am the yin. Introverted and passive, I hardly take it upon myself to get out. Yet, I can’t help but feel jealous of the time my husband gets to get away compared to me.

I know it is unreasonable to feel this way. I have just as equal an opportunity to get out as he does. I want to get away and focus on me. I also feel an overwhelming sense of guilt and anxiety at the thought of leaving my children, so much so that it prevents me from tending to my own needs.

As a result, I end up expressing these needs as daggers by using my husband as a human target. He is the only one I can turn to.

Reflection is key

Ultimately, I have realized that reflection, even more so than communication, is key. In order to help each other, we need to look inside ourselves and recognize why we behave the way we do.

You can’t truly be sorry or move on until you see your fault. You can’t admit you’re wrong unless you have taken a moment for self-reflection.

This is the key that keeps us going through times of unbalance. We have the deepest understanding of each other only after reflection.

It’s the little things

Sometimes, after all the fighting, there’s nothing like a small gesture to keep the love going.

For our 7/11, we picked up some of our favorite food and spent the night in. My husband gave me a tear-jerking card and Harry Potter lounge pants.

Daddy, I brought the wheelchair in for you. I’ll reset the sprinklers, too.

Love ya.


Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.

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