Story #8: Preschool for Two

After the series of seizures in the hospital, drug 2D was weaned down and replaced with drug 3S. This new drug was sprinkled onto pudding or peanut butter. The new set of side effects to watch for were hair loss, increased appetite, and learning issues. Well, at least her gums were safe now!
Rose’s birthday is in October so she was either going to be older than her classmates or much younger. Since she was small and had health issues, we had chosen to keep her in preschool an extra year before starting public school. We were glad that we had done this in view of all these ear infections, drug transitions, and seizures. I wore a beeper on my belt at this point. I would drop her off at preschool and go walk at a park down the road or visit grocery store located just across the highway. I was never more than two minutes away. Rose and I were tethered together out of my fear. These Mother’s Morning Out days of preschool were our only break from each other.
Our family loved this preschool. We knew all the teachers well since Rose’s older brother had attended there a few years earlier. The one person on the staff who was not my friend at the time was the director. She was gruff and blunt. She said what she thought without any sweet Southern filter.
When Ms. B heard about Rose’s surgery and the following series of seizures, she phoned us. She informed us that the church preschool could not be responsible for handling medical emergencies. The teachers were not trained for these. Rose was a liability risk. This was hurtful to us, but I also understood it. Rose’s teachers truly loved her and if anything happened to her on their watch, they would have been devastated. By law, public schools have to accommodate students with special needs, but churches do not.
Our options were to pull Rose out of her preschool or have me stay in the building every day while she was there. We were not going to tell Rose at the tender age of five that she was not welcome back into her beloved preschool because of her seizures. Instead I simply stayed at the church every day. The staff knew that I was upstairs in an empty room near the director’s office. I was only a shout away if needed. I read books and studied. Other mothers and teachers dropped by for visits. The director came by to check on me. I began helping her out with needed tasks. Then I cataloged all the children’s books and repaired them. I even substituted when other teachers were sick.
The experience was good for all involved. Rose got to stay in school and her teachers did not need to worry because I was close by. The director and I became good friends.
When Ms. B would drop by to check on me everyday, sometimes I shared my worries. Once when I was obsessing about an upcoming event, she said, “Don’t cross the Fox until you cross the Fox.” She then went on to share that this was some advice from Abraham Lincoln. Apparently there was a Fox River. As folks traveled toward the river they worried about whether the river was up too high or moving too fast to get across. Lincoln was reminding folks to wait and “cross that bridge when you get there.”
Once Ms. B caught me crying. I was overwhelmed by all the hoops we were having to jump through to get help for Rose. She looked into my eyes and asked, “How do you eat an elephant?”and then answered, “One mouthful at a time.”
Seizure Mama speaks to parents:

Forcing the responsibility for your child’s safety onto others is not fair to them or to your child. If your child’s seizures can be dangerous or even life-threatening, you want a willing and competent person in charge of his/her care. You must be an advocate and an assistant. People fear what they do not understand. You must educate the people around your child about epilepsy. Yes, there is a stigma. There will be some shunning. But if you confidently share information with others, there will be no surprise,or public revelation to dread. We were always open about Rose’s epilepsy. This is so much better that trying to guard it like a secret. Be brave and honest. Would you hide your child’s asthma or diabetes? Of course not. Then do not hide this condition. There should be no shame. If your child senses your shame, he/she will feel ashamed of it,too. Do not hand them a handicap.

Be Brave?

Rose had seizures everywhere.

On these many occasions, I plaster a smile on my face and look folks in the eye as they glance and walk by.

Nothing unusual about a grown woman sitting on the floor/ground beside an unconscious little girl.

Rose had a particularly dramatic series in an undisclosed, public location.

As I was sitting on the floor in a hallway, a woman with healthy children walked by, patted me on the shoulder and said “Be brave” and walked away.

I am on the floor. My child is unconscious, again.

Be brave?

Do you tell a person with cancer to be brave?

Do you pat the shoulder of someone being wheeled in to open-heart surgery and whisper “Be brave”?

What choice do we have?

Seizure.  Stop the clock.  Then we wait.

Seizures stopped ballgames, picnics, award ceremonies, bible school, band practice, ball practice, dinners in restaurants.

Stop. Wait. Hurt? Get up.

Stop. Wait. Hurt? Get up.

I am tired of being brave.

How about sitting on the floor with me?

Wait with me.  Down here on the floor.

Anchored to this spot until it’s over.

Until she comes back to me.

Stay and help us up.

If you really care, don’t walk away,

leaving us to be brave,

down here,

alone,

afraid.

SEIZUREMAMA