Wow, it’s been a long time since I posted. It’s been a really busy season in our lives and one that is full of new discoveries. The most significant ones are that Kaki has begun having seizures. They are focal seizures, so not the full body shaking that most people would know as a seizure, but its unusual eye movements. Tomorrow she is going in to the hospital for a sedated EEG to see what is going on and causing these seizures. We have spent some time in and out of the ER with her and we are ready to have some answers and get this under control.
Last Friday, we visited the Psychologist with Joshua. Joshua was born prematurely at 29 weeks and also has a genetic condition called Neurofibromatosis Type 1. He has had developmental delays since he was born and we have had therapy of one type or another since he was 9 months old. The doctors kept telling us he would catch up, but I just knew in my heart there was something more to it. I finally asked for a psychological evaluation. The psychologist tested him and said he is developmentally about the age of a two-year old. He isn’t catching up as quickly as everyone expected and the psychologist believes it is because he has mild intellectual disability. Yes, that is the same diagnosis that Kaki has, but hers is severe. They cannot give a formal diagnosis until he is 8 years old, but the psychologist is convinced that this is what we are dealing with.
I will tell you that hearing that Josh has intellectual disability was about the last thing I wanted to hear. I knew there was something wrong, but I just didn’t want to hear that. Intellectual disability (formerly known as mental retardation) is a lifelong condition. He will never “catch up” to his peers. He will develop and grow, but never to the extend that a normal child would. That is hard to hear about your child, even if you have prepared yourself for it. We now have two children who will require lifelong care of some type. Josh may be able to live on his own and have a job, but he will still require supervision. We naively thought when we walked into that NICU five years ago and saw this tiny baby that he would somehow be “normal”. And some babies are, but that is not our reality. I will not lie and say we have worked all this out in our own selves yet. We are still parents who are grieving the dreams we had for our son and trying to adjust expectations. We don’t know how to move forward yet, it’s only been a few days. Honestly, we are still in shock. But I will say, in the midst of it all I have peace. This was no surprise to God. It was not what we wanted or would have wished for, but God knows and He has a plan. That’s what I’m telling myself right now.
I wanted to share all this with everyone because I have always been honest about our trials and what we are going through. We need prayer more than ever and we need community. We want others who are going through this also, to know they are not alone. We want to know we are not alone. It has been a season of trials, and it’s not over yet. But we are growing and changing through it. I have had three women in my life tell me when they first met Joshua he would be a preacher for God. I kept thinking about that this weekend as I was processing this diagnosis and at first I thought, “well, that will never happen”. Then I thought, “you know, ministers of the gospel point people to Jesus, and Joshua can do that no matter what his abilities are.” I have to dream new dreams for him, but that’s okay. God already has a plan and we just have to keep taking one step at a time to deal with what is in front of us today. I cannot look to far into the future, it’s more than I can handle right now, but God is giving us grace to handle what is in front of us today.
Holding you up in prayer.