Every year this very time of year, I reflect on what I have learned, where I want to go, and what I hope for my new year. Rarely do I leave a year with all good feelings or all bad feelings. This was one of those years where things were really, really hard.
Shortly after the beginning of the year in 2015 we entered the year with Todd’s mom in the hospital. She was severely dehydrated, and she had lost nearly 20 lbs in just over a few months. Kidney cancer and chemo was taking a toll on her body. His family made the difficult choice to stop treatment and enable his mom to spend her final months in hospice at home. As a wife there is nothing more powerless than watching your husband slip away in to a sea of depression and grief. Nothing I said or did could make it better for him as he watched his mom slowly die. We drifted apart as the months passed on. I was working full time, and I had to manage the care of my child that was stalling on every single development chart. There was zero time to think about how to help him, when I needed to figure out how to help my son. In the midst of all of this, we received a zillion new diagnosis for Von.
As Todd and I drifted apart in his grief, I stuck my head into the online journals learning about developmental delays, speech delays and sensory processing disorder. I raised the concerns with Von’s doctors around March that I was really concerned with his lack of progress. It was then I reached out to a private therapist just outside of our home and had Von evaluated. We had his evaluations and learned that not only did his disease impact his health but now it was impacting his development. He was behind in every single area. When the testing and reports were all written, I had a 2.5 year old that was functioning at that of a 12-15 month old. He was in the less than 1% in nearly every single area. They told me they had no idea what the future held. He wasn’t talking, wasn’t socializing, and he didn’t appear to know what was going on around him. Therapists assured us that we would be able to intervene and potentially catch him up, but they were clear none of this wasn’t anything he would grow out of. Von was who he was, and Von was not neuro-typical. He had Apraxia of Speech, Oral Apraxia, Dyspraxia, and Sensory Processing Disorder. We were advised to seek the aide of a neurologist. We met them in June, and upon that meeting it was made clear we needed an additional MRI. They needed to see if he had brain damage effecting this, and they needed to determine why his head was so large.
In the midst of all of this, my mother in law passed away. Her funeral, burial and weeks after were a blur. Todd was absent, sad and inside of himself. I tried to get him to talk but it was hard. Often I went to bed and didn’t know what time he finally came to sleep. As we prepped for Von’s MRI in August, our lives were moving in different directions. Von’s MRI wasn’t suppose to be anything amazing. It was suppose to just show what we already knew. He had no pituitary gland. We weren’t expecting the results that were provided. Von’s MRI indicated ventricles in his brain that were oversized – they called Megaventricles, and his cerebellum tonsils were herniated down his brain stem. They said it was called Chiari Malformation and we would need to see a neurosurgeon.
We transferred hospitals, and went through a battery of testing to find that at this point the Chiari was asymptomatic. However, it didn’t rule out brain surgery. It didn’t mean it couldn’t cause issues down the line, and it didn’t mean he didn’t need a shunt. All of these were unknowns. The doctors felt at this point it was stable enough to continue life as status quo, but it’s another disease added to our list. Not only does it cause pain and neuropathy, but it can cause debilitating headaches, difficulty swallowing, digestive issues, sleep apnea, cysts in the spine, fluid build up in the brain, but it can also cause sudden death from hemorrhaging. Not only did Von have another disease – he added a third one that could kill him and was termed life threatening. How did I even deal with that? I prayed. I threw myself in to church, and in September I had a come to Jesus moment. I prayed, I begged for something, and I prayed my husband would wake up from his depression and grief.
Slowly we dug out of another hole. Todd sought counseling, I ran to my bible, started blogging more consistently, and Von qualified for a ton of in home nursing. Life became more stable as we welcomed RN’s in to our home. We no longer had to worry about the day to day of therapy, appointments, medications, blood sugar and wheezing. We had people here to help us with feeding, speech, fine and gross motor and suddenly, I found myself finding myself again.
For 3 years I was in a depression. I was sad, lonely, and desperate for understanding. I put my energy and time in to advocating, writing and reaching others through my blog. I wanted to let other parents out there know there was a way through it. If only one person read it and gave me feedback it was worth it. Then something happened. My articles were picked up by a world wide publication and I had people by the hundreds following us. Parents, adults with disabilities and educators reached out to me. I found myself no longer stuck in my problems but writing was a way to manage my grief, pain and a way to help others. It was hard to put it out there. I became exposed. I put this all out for everyone. The good, the bad, the funny, the sad and the indifferent. There was good feedback and bad. And through it all I found myself doubting this journey the very last week of the year.
Then I woke up this week, and I realized blogging isn’t just for me. This is for Von. This is for his voice, for our journey, and to show others how life is messy and crazy, but with a little determination, a mind to research and dig, and a deep devoted faith in God you can get through anything. We end the year with Von speaking in full sentences, getting better in balance and learning skills daily. We know he will never outgrow his diseases, but with help from therapists and doctors he can reach is maximum potential. We will push him forward, and we end the year with hope that Von will continue to surpass all doctor expectations. Was the year perfect, not even a little. There were far more bad times than good in 2015. I know this was a learning year for Von, my husband and myself. I know going in to 2016, there is nothing that can rock me now. I will get through it by writing, praying, running and loving my son and husband. It isn’t a perfect life, but it’s my life, and I am finally coming to terms that even though I don’t have a crystal ball – I’m ok going along for the ride.