Zander's Condition From an Aunt's Perspective

Congential Myastania Gravis is a monster that has attacked my nephews body. It is a mouthful for an adult, let alone a one year old boy who coos and smiles. I hadn't even heard of it until last year when a cousin's husband was diagnosed with it. He had droopy eyelids. I assumed that this condition was just for older people not sweet little boys.

I am your typical aunt. I love all five of my nephews and I have a special bond with them. I take them mudding, buy them toy tractors and the implements that go with them. I take the older ones to tractor pulls and rodeos when they are in town and there are events close. I have even been known to take them fishing at the neighbors. However, this activity doesn't last very long because at the ages of 5 and 3 they get bored rather easily. They would rather throw rocks than cast a line out.

This is why it is so hard to watch Zander have Congential Mystana Gravis. I wonder if I will be able to take him fishing and fishing, and to rodeos and tractor pulls. I feel like I will be able too, at least I hope I can.

It tears me up to hear his older brothers ask the questions that cuts to the core. "Mommy, why doesn't Zander crawl like the twins, my other sister's two boys that are only two days older than Zander?" It brought tears to my eyes when I saw Jamie wipe the tears from her eyes last week. Then, I heard Walker and Isaak ask things like, "Why can't Zander walk like Jeremiah does?" It makes me want to cry for Zander and my sister. I can't cry in front of them. I have to be brave for my sister.

Last Monday, I got to watch Zander while my sisters went and got their hair done. Jamie is only away from Zander while she is at work. For her, this was an opportunity to relax. For me, it was a gift. Zander and I had several talks. I told him that he has to be strong and fight. He has to push himself at physical therapy so that he can chase the girls on the playground when he gets older. He just gave me a grin. We talked about horses and Max, the four-wheeler. I told him when he was big, like maybe 2, I would show him how to start and stop it. Then, when he is 4 I would let him drive it. I put him down for nap after our conversation.

At 11:00, I went to check on him. His eyes were open and they followed me as I walked into the room. His eyes had so much spark. He tried to show excitement. You could tell he was excited to see me. He was able to wiggle his toes and lift his feet off of the ground a little bit, but he couldn't lift his arms. This is when his tough ol aunt broke down and cried. I hadn't cried in a long time. I am not that type of "girl". I just held him and cried. I don't know how long I cried. After a while, I just got up and wiped my eyes.

At 11:30, I gave him the syringe full of Mesatonin. This is suppossed to help perk him up. It is suppossed to help the communication between the brain and the muscles. It usually does, until it wears off. Jamie gives it to him three times a day. It helps make him more active. When it is in him, he is able to sit in a bouncy chair and bounce like there is no tomorrow. However, when it is out of his system, he is like a ragdoll.

Please remember Zander and other children like him in your prayers. Pray for medical treatments that make movement possible so that they can experience life to its fullest.