Alora's Story...

Nothing is quite as frightening as the silence of nurses and doctors when a child is born. While I could hear Alora crying normally, the hushed tones of the nurses and doctors frightened me. One of the nurses finally came to answer my repeated question, “Is she okay? Is she okay?” Alora was born with bilateral clubfeet, she told me. Of course the first thing I did was blame myself. What had I done wrong during the pregnancy, I wondered? If I could have taken her struggles upon myself, I would have.

As I nursed her one night, I noticed that she seemed to stop breathing for a bit. When I gently nudged her, she seemed to breathe fine again. At her first check-up with the pediatrician, I mentioned the fact that I was afraid Alora was not breathing right at night. Her pediatrician put her on a heart/respiration monitor that day, and within the first week Alora had stopped breathing in her sleep 19 times.

I dreaded the sound of that thing going off each night as I tried to lie down to sleep. Even if it didn’t go off, I never seemed to rest well. She had to wear that until she was 4 ½ months old.

In the meantime, the doctors had been casting her feet every two weeks since she had been 6 weeks old. She had to wear a harness to keep her hips in place as well since she had bilateral hip click as well. The harness also lasted about 4 months.

By the time she was 9 months old, she was terrified of stethoscopes, and the sight of a nurse playing with a rubber tourniquet as she chatted with another nurse would set her to screaming for fear of more blood work. It was that month when Dr. Arronson decided that surgery was necessary to correct her feet. Nine months of having a new set of casts on her feet every two weeks had done nothing to correct her feet. So, when she was 10 months old, Alora had both of her feet reconstructed. I thought nothing could feel worse than sitting there beside her crib there in Arkansas Children’s Hospital, watching her in pain like that.

I was wrong.

A month after the surgery, I had gone to pick Alora up from the babysitter’s house a couple of houses from my own house. I was a single mother with 3 other children besides Alora, so I had lots of distractions as the babysitter was telling me about how the afternoon had gone while I was at work.

Alora flung herself backward suddenly, but at the time, I thought someone had been playing a game with her by swinging her backward while holding her back and neck. It had been a game my oldest son had loved. I had never done it with her because of being overprotective, I’m sure. I absentmindedly said, “No, no, sweetie,” as I continued to talk to the babysitter and pulled her back up to my shoulder.

Suddenly, she threw herself backward again, more violently this time. When I pulled her back up to my shoulder, I then saw her face was distorted and her lips were turning blue. The most frightening part was not seeing the child I knew behind her eyes. Her eyes stared blankly at me….through me.

We were about a block and a half from the local ambulance service at the time. So, her husband said, “Come on!” I held Alora in my lap as he drove to the ambulance service. I began giving her mouth to mouth as soon as we took off.

By the time we reached the ambulance service (where my cousin happened to be on duty), Alora’s first gran mal had ended, but she was still cyanotic. This was the first of many ambulance rides to ER, most of them in the middle of the night. By May 1998, Alora had been diagnosed with an idiopathic seizure disorder.

Like most children with epilepsy/seizure disorders, Alora has been through many medications to try to control her seizures. It began with Phenobarbital. Then, it was Tegretol. As she outgrew the recommended doses for each medicine, she was put on a new one.

When she was 3, she was finally put on Topamax about the same time she had to have another reconstructive surgery on her right foot. By this time, she was showing developmental delays.

As a parent, it’s so difficult to know if you’re doing the right thing at times. I was devastated as I saw what the seizures and the medications were doing to my child. I saw a child who had developed mentally on schedule until being put on Phenobarbital slowly lose ground as other children her age began to learn new things.

When she began kindergarten, Alora was diagnosed with mild mental retardation. Her IQ scores just didn’t seem to match what I thought she was able to do, though. Her nonverbal IQ scores were a lot higher than the scores from the tests done by the school. I held out hope for her still.

Topamax seemed to be the right medication for a long time, but as Alora began to slip further and further behind her peers academically, I asked Dr. Sharp is we could do something to help Alora with this.

So, he changed her medication to Keppra. As always, each medication has its benefits and its drawbacks. Alora is 12 now, and she’s been on Keppra for well over a year now. In January, she hit her milestone of being seizure free for one year now. The Keppra affects her moods and makes her crankier than the Alora we’ve always known her to be at home. Still, as I see how other parents are still struggling with their children having multiple seizures daily, and slowly watching them slip away mentally as I have Alora, I realize how lucky we are.

Alora’s birthday was not long ago, and I got a chance to see just what kind of person she really has become as I watched her interact with her classmates. She’s in a classroom where she’s the most highly functioning child there. Three children are in wheelchairs, and two of those cannot eat solid food. She made certain that I had brought pudding for the party, so that one of the other children could have a snack because he was not able to eat what the rest of them could eat. And when the teacher let them turn on music and dance a little, Alora took one of the children with the wheelchair to “dance” with him, pushing his chair back and forth for him. She did this unbidden. No one asked her to do this. No one suggested it. She was making sure this child had fun. The unselfishness of it almost overwhelmed me at the time.

Alora has a spark. People see it. They are drawn to it. Of course they don’t see her worst moments like we do at home, but her charisma is still there. I don’t realize just how sweet she really is until I see her with someone else, giving away love in a way kids her age have normally stopped doing. Seeing her give to her classmates like that just reinforced my pride in her for her ability not only to take what life has thrown at her with a smile still on her face, but also to try to make life worth smiling about for someone else as well.

It’s seeing this side of her that makes me hope even more than before that her days of being seizure-free will continue to grow. But I understand the struggle. I understand that no matter how many hundreds of gran mal seizures I’ve seen her have, and no matter how many times I’ve seen her become cyanotic, it will always scare me to death. I will still have that fear in the back of my mind about the moment somewhere in her future as an adult when I won’t be there to help her.

We’re not mant to live in fear, though. I believe this with all my heart. We are meant to live with hope. Most of all we’re meant to simply live…live this life to its fullest. When I look at Alora, I see that. She is a constant reminder to live with joy in this moment.

Alora