Over the years, we’ve had road blocks that forced us in another direction. Each time, prayer had been involved. Sometimes I received the answer I thought I wanted, and sometimes I didn’t. Not everyone believes, yet when non-believers are in crisis, they ask me to pray for them. I never quite understood this. If you think I am crazy because my faith does not make logical sense to you, then why do you ask me to pray for you? They think I understand all tragedy because I have the greatest tragedy of all, my child is not “normal”. Yes, my daughter is significantly challenged, but this is “our” normal. Every special needs parent has had someone say “oh, I could never do what you do, or, you are such a special parent”. However when tragedy does strike their family, they suddenly “get it ”. They think they know how I feel. They figure who better to share their pain with than me. Apparently, I’m not not the first to witness this phenomenon.
Of course I prayed for my child to overcome her challenges and be able to talk, walk with grace and have a life of play dates and parties. We are still waiting. I also pray for the other families who have been thrown that curve ball. In the interim, we have received some answers. The first big one was with regards to her VNS (vagus nerve stimulator). The seizure meds were not working so we felt this was our last option. The first year, it worked beautifully. It interrupted and prevented Jess’s seizures, so much so, Jess started speaking a few words a week. It was a glorious time! The roller coaster was clicking up the track. Jess also had a young teacher that taught presumed competence. For the first time we saw marked growth. Like all roller coasters, we went down faster than we went up. Before the year was over, the implant slipped out of placed and had to be replaced. At some point, I started to worry how Jess would manage the medical side of the implant? For four-weeks, this gnawed at me and I couldn’t let it go. I was obsessing about the future. (This is never a good thing.) To everyone’s disbelief, the following two weeks, Jess’s body rejected the implant. There was no infection and the surgeon was perplexed. He’d never experienced this before. Well, my prayer was answered, the VNS was no longer a concern because it was removed during the emergency surgery. If that weren’t bad enough, she came home with a staph infection. I did not realize how life threatening this was because I was so focused on the seizures. Jess had to go back on Neurontin. Within 18-months, Jess was weaned off medication and we are status quo. I pray that the seizures do not return.
Jess’s last year of school, when we pulled her out and put her in an occupational training center, we hit the wall again. All these years she had manipulated everyone to the point where she didn’t have to do much for herself. She was in a new setting with a different population of people. She literally fought us with ever fiber of her being. During this time, I prayed non-stop. Every waking thought was consumed with the question what will become of Jess if she doesn’t believe she is capable? What will become of her when we are no longer here? One morning in November, 2012, I woke up abruptly. The house was dark and my husband was asleep. In the still of the morning, I heard a voice say “the best is yet to come”. It was a man’s voice, but not one that I could discern. It was clear, I had to let go of control. I had to stop worrying about the future. No amount of worry was going to change our course. From that moment on, I listened to the inner voice. The best way to describe this, I felt guided to do things that hadn’t been part of my plan. This is when Jess started to slowly accept change.
Sometimes my prayers are much simpler. Months ago, I saw a video of a mom sharing her story how she learned her son’s AS diagnosis. Her words hit me hard. I’ve carried this vision in my heart for all this time and I secretly hoped that maybe one day, I’d find this family. Over the course of this last week, I found the FB group Angelman Connections. It occurred to me that maybe if I posted the video, I could get an answer? Apparently, this was easy peasy because within minutes, I found Tina and Jace. We have not shared the exact same path, yet we both learned the same important lesson. Tina said the words that I felt and the message that parents need to hear, when it comes to your child, don’t expect the medical community to find the answers. Thank goodness we have information at your fingertips. Yes, this simple prayer answered gave me joy, however, I hope as more families connect, they find the support they seek. You see, every small prayer is connected to an even bigger one.
There isn’t a day that goes by that amazing miracles are not performed, when the sun rises and sets, watching the waves break, and feeling a gentle breeze on my cheek, these are all things we just take for granted. Most people also take for granted that they can talk and walk and for the most part, are healthy. Every day I pray that each person I have met has their prayers answered. We may not get what we ask for, our struggles may not make sense, but I do believe, some day, we will get the answers we seek. Yes, I do believe that the best is yet to come!