November will mark one full year since we began our diagnosis journey. Though we are getting closer and have some pieces to the puzzle complete, there’s still a long way to go.
Greyson has adjusted well to his doubled dose of meds, but we are still seeing seizure activity and even some mini-stroke episodes every so often. G is full of life and energy. He is always moving and/or eating, sometimes together. He has a love for reading books/tearing out the pages of books and more recently, music.
Derek and I always joked that we would breed musical prodigies, but we both agreed that it was something we would never push on our kids. My parents fully supported my musical abilities and other than years of torture with piano lessons, I was never forced into being a musician. Music has run deep through my family, starting with my great-grandmother and her siblings. My Nana encouraged my grandpa to play piano, as she did and her siblings all played a musical instrument. My great-grandparents did push music on my Nana and her siblings when they lived in Poland and it seemed to trickle down to my children.
Greyson is liking music so much recently, that it soothes him and Derek swears that he has him conditioned to come to him when he plays one particular song for him. Our most recent search is for grants that we can apply for, so G can take either music therapy classes or daddy & son aquatic or therapy/swim sessions. Naturally, I think he would enjoy the music sessions more because it’s literally in his genetic makeup to love music. We have also paired up with our MA insurance plan to find available grants and resources to provide a seizure alert dog for Greyson. I’ve been told stories of breeders donating a puppy to a child with disabilities, and local churches providing a grant for the dog to be trained. We would love to have a dog to alert us when something is wrong and to comfort Greyson when he is having a tantrum, but the cost of training or obtaining a dog that is trained, is nearly impossible for our family.
I never truly understood the struggles that the parents of our clients at CADD go through daily, until now. Through my position and desk space at work, I hear/see many of the clients with their families and have the opportunity to greet and make small talk with some of the parents. The families that particularly strike me, are those with the non-verbal, or aggressive kiddos. I see kids in their teens, or young adults that are non-verbal with many challenging behaviors, and I wonder how that child’s parents survive. Before I had children, I would think that those parents made it look so easy. They had help from BHR Services, or respite care, many of them did not work and received SSI benefits to stay home and “take care” of their child, AND they didn’t have to pay for healthcare! How easy it must be!
From the minute that we first began to see red flags with Greyson’s development, our entire world changed. I now understand why a parent often has to stay home with their child. Simply answering the phone calls to set up services, or to manage my child’s appointments, is a full-time job! Last week alone, I had over 35 voicemails from different nursing agencies, our insurance companies and Greyson’s therapists- all of which messages were directly related to Greyson’s care. Exhausting……Mentally, we are drained. Emotionally, we are numb. Physically, we are spent. I am not sure how we are continuing on one year later, but we are. We do it for him, so that when he’s 30 years old, he’s not stuck in a group home, non-verbal and aggressive. We are sleep deprived, so that he can obtain the best treatment from the best doctors around. We cry because sometimes that’s all we have left to spare. I’m not saying this to gain pity. I’m saying this so that others can see a glimpse of our everyday lives, especially coming from someone who was on the other side of things two-years ago.
Fall is a new season. It’s my favorite season. I love the colors, the smells, the crisp air in the mornings and evenings, the sound of leaves crunching under my warm boots or moccasins. It’s also a time where the trees show us that it’s okay to let something go and that we can survive and move along, by shedding their leaves and preparing for new ones. The fall holds many opportunities for family adventures outdoors and memories to be made, despite my fears of what others will think when my son has a tantrum in public.
The next few months may be unpredictable for us, but we shed our leaves as we prepare for a new year.