EpilepsyBlogger: Epilepsy, A Love Story: A Mother's Love

About Emily Cook

Emily Cook is the mother of six children, author, and blogger. Her daughter Aggie began having seizures shortly after her fourth birthday, in 2008. Aggie’s complex partial seizures did not respond to treatment with medication, but continued to get worse throughout the following year. By the time she arrived at Cleveland Clinic in July of 2009, she was having at least 20 complex partial seizures per day, many of which caused her to stop breathing, and she received diastat on a weekly basis. At Cleveland Clinic, doctors recommended surgery to remove a tumor from her right parietal lobe. Aggie has been seizure-free since the day of that surgery. She will require frequent MRIs for ten years following surgery.

Emily Cook is a mother, a sinner, a child, covered in the blood of Christ, and freed from the burden of pretending she is strong. She is a woman growing backward, a mother-child, messy with sin, but rejoicing in the constant love of her Heavenly Father. She lives with her husband and their six children, including now-healthy Aggie, in the arms of the church where her husband is the pastor.

Aggie's First Seizure

It was October 2008 when Aggie had her first seizure. Before that moment, that brief pause in time that changed our lives, I was a busy mother. We had four children at that time, and were expecting our fifth. I was out of breath all day long as it was, keeping up with the constant demands in our little home. And then, seizures invaded. Our lives changed dramatically as we tried to accommodate to the new challenges that came with epilepsy. I changed. The way I mothered my children changed. The lives of Aggie’s siblings also changed.

How does epilepsy affect other children in the home? Today I’d like to offer a partial answer to that question, based on my experience in a home bursting with small children and flooded by seizures.

"Sibling-Squish"

I look at this picture and remember...

My sweet family. My treasures. Sitting on a log on a beautiful day. What blessings. And oh my, what needs they have.

Aggie is the second from the left. The girl who has seizures, with the tired eyes, up on a log for the picture. (What am I doing letting her go up there?!) I’m holding the baby, but even as he screams his complaints to me, my eyes are on her, and I am ready to catch her if I have to.

Aggie’s two other brothers were content, red-faced from running around at the park that hot afternoon. I was glad for the help of grandma and daddy, so we could actually go to the park. It was something I was no longer able to do without help, due to the extra problem of seizures that we dragged along with us everywhere.

Aggie’s older sister Lorraine is behind her. Squished, but squeezing out a smile nonetheless. That was her life so often during that year of seizures. After Aggie, she was the one I worried about most.

Talking About Seizures with the Other Children

After Aggie was diagnosed with epilepsy, we discussed it with the other children. The younger boys were oblivious, but Lorraine (then age 6) hung on every word.

“Aggie’s episodes are called ‘seizures.’ If you see her having one, will you please let mommy know so I can write it down and tell the doctor?” I had started a seizure journal, and I had no choice but to rely on the help of the other children to watch for seizures.

Lorraine took her job seriously. She alerted me to seizures many times, and as they got longer and more dangerous for Aggie, she learned how to protect Aggie if necessary. I remember once when the girls were riding their Big Wheels in our basement and I was working on the laundry in the next room. I heard Lorraine yell, “Mommy, Aggie’s having a seizure!” As I went into the next room, I saw Lorraine kneeling on the floor next to Aggie. She had Aggie in her arms, and Aggie’s back was arched while the seizure washed over her. Lorraine’s quick reaction had protected Aggie’s head from the concrete floor.

Lorraine learned quickly not to panic during seizures. I tried to model calm awareness for her and her brothers, often holding Aggie while trying to reassure them, “This is just another seizure kiddos. It will be over and a minute and she will be fine.” It was usually over in a minute, but I was never sure that she would be fine.

I hated that my other small children were exposed to these difficult things at such an early age. I knew Lorraine sensed my worry and sadness over the situation. How could I help my young daughter cope with these things when I was struggling to cope myself?

Is There Enough “Mommy” to Go Around?

How badly I wanted to be the one who met all of the needs of each of my children. I wanted to be the one to cook healthy meals; tickle them; read them stories and lovingly tuck them in bed. But it was so hard to listen to knock-knock jokes while I was mentally preparing for the next seizure. As Aggie’s seizures increased, I developed what I call a “seizure-antenna.” My attention was always pointed at least partially in her direction. It had to be. However, I knew I was giving less of myself to the other children.

This is a real problem, and I have no easy answers. Of course, I had to do the best I could, but I could see that the best I had was still leaving unmet needs around me.

I had to learn to let some things go. In so many potentially dangerous situations, I found myself wrestling with a choice:

- Do I let Aggie do this? If I do, will I have to stay close to her in case of a seizure? Will the other children be OK without my full attention?
- OR, do I make Aggie sit and watch while the other children do this? (Unless Aggie was tired and compliant due to seizure exhaustion, I never had the heart to do this.)

- OR, Do I forbid it for everyone because I must forbid it for Aggie?

It took me several months with seizures to realize that we had entered into an entirely new lifestyle. I could no longer take the children to the park, or swimming, without at least one other set of eyes. There were simply some things we had to eliminate completely, just to simplify the things I needed to think about. I was not going to teach them Spanish. I could rarely find the energy to do a complicated craft. I would probably not be hosting many sleepovers. The children and I would be skipping many social events. The other children were forced to make sacrifices, and I truly hated that.

Learning to Rely on Other People

I learned that epilepsy was a burden not just for Aggie, and not just for Aggie and her parents, but for the entire family. Yet, that burden was shared not just by the family but by our church family and community, and when they shared it with us, it was definitely lighter.

When I began to be honest about my need for help, people around me were incredibly willing. I asked some of the teenagers from the church to come over after school at times. On days when I was oppressed with worry, I may not have been capable of having a family sized tickle-fight. But usually, the babysitters were, and that was such a blessing. It was wonderful to watch the way they brought energy and joy into our doors. A few friends were even prepared to handle Aggie’s seizures so that I could turn off my seizure antenna for a couple hours and focus on the other children. Accepting these gifts of help was crucial.

Accepting That I Could Not Protect Them From Everything

Isn’t that the hardest lesson to learn as a parent? And then, as a parent of a child with seizures, the feeling of powerless is even more acute. Not only was I unable to prevent the next seizure, but I also could not completely protect the other children from seeing the seizures, sensing the worry, and feeling the anxiety in the home.

So we were honest, even when it was hard. I learned from my husband’s honesty, as he shared his own struggles with his family and with our church family. I watched him speak frankly with the children, never saying he was not worried, but always pointing them to Jesus and His care for us no matter what our circumstances.

Aggie and Lorraine the day after surgery.

Our little big girl, Aggie’s big sister Lorraine, came to be with her on surgery day. She watched wide-eyed as mommy held back tears of worry, and as daddy led the family in prayer in the waiting room. She waited her turn to see Aggie in the recovery room after surgery. She saw Aggie upset, uncomfortable, and in pain after surgery. She shared a popsicle with her and tried to distract her with Tom and Jerry cartoons.

Lorraine helping the nurse apply leads to Aggie's chest.

She shared our relief when Aggie began to feel better. She entertained Aggie, as only a big sister could, with a celebratory tea party, complete with gummy worms and slurping noises.

A sister's celebratory tea party.

Had I been able to choose, I would have protected both girls from this trial. But God, who did not let me choose, was even then flooding our family with grace. Today, I see these sisters, close at heart, and enjoying good health together. Now age 7 and 9, they are both young women of compassion and prayer. Wonderful are his works.

A recent picture of Lorraine and Aggie, still sharing days of sunshine and rain!

Learning to Pray for My Own Children, to Ask God to Care for Them in Ways That I Could Not

There is NOT enough mommy to go around. This is true of all parents, but I did not fully understand it until our year of seizures. My body is too tired and my heart it too selfish: I cannot meet every single one of my child’s needs. But the truth is, I was not meant to. Only God can fully and completely meet my needs, and the needs of each one of my children.

Aggie and baby brother Eldon at Cleveland Clinic.

So I prayed for my children, more fervently than I had ever before. I prayed, of course, for relief from seizures, for care and protect for Aggie. But I also prayed that God would care for the healthy children. I prayed He would meet those needs for attention and affection- those needs I could have met a few months prior, but were now forgotten in the flood of problems that came with the seizures. I prayed that He would meet those needs in them that I could not even see, because my eyes were directed towards Aggie. I prayed that He would send help in all forms, in every form, for her, for me, for them.

Though He did not always give me or my children what we wanted when we wanted it, He did care for us. He was slowly teaching us that in Jesus, He loves us even more than we love each other. And even in the days of seizures and sadness He poured out on us grace upon grace.

At Disneyworld last month: Aggie telling Lorraine to put on her "brave face!"

Aggie has been seizure-free since her surgery in July of 2009. She and Lorraine continue to share deep love of sisters.

Emily's prayer for those with Epilepsy and their caretakers:

Heavenly Father,

We are small and powerless, and living in a world full of danger. Please help all people who struggle with epilepsy. Protect, sustain, help, and please God, send us a cure.

Please also help parents, and siblings who are also affected by epilepsy. Meet those unmet needs, both big and small. Sustain them with gifts of grace and goodness, and assurance of Your love for that we see so clearly in Jesus.

In His name we pray,

Amen.

For more by Emily Cook, including the latest on Aggie visit

http://www.weakandloved.com/

Now Available

Weak and Loved: A Mother-Daughter Love Story

http://www.amazon.com/Weak-Loved-Mother-Daughter-Love-Story/dp/1466484314/ref=sr_1_1?ie=UTF8&qid=1328634621&sr=8-1

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