“I don’t know how you do it.”- It’s probably the one question I am asked on a regular basis from people that I know AND from people that I don’t know. Many of my friends and followers see that I blog/record my entire life and the kid’s childhoods, for both them and myself, but many people see me as the positive, optimistic, hard-working mom, who would do anything to advocate for her children and isn’t afraid to stand up for her beliefs. Well, would you believe it if I told you that this outlook on life and our family’s situation is more of a “newer” thing for me?

Flash back to 2020 when a little thing called COVID-19 took over the world and forced everyone to stay home and not spend time with anyone outside of their own houses. As a natural extrovert, “quarantine” and “social distancing” were not words that had ever been used in my vocabulary before. I have always been a social individual and can easily talk to just about anyone that I am put into a room with. Now, flash forward to current day and I still have bits and pieces of that personality, but I much prefer to keep to myself and observe, rather than dominate a conversation or try to lead. Don’t get me wrong, I ABSOLUTELY will still talk to anyone and make friends with a brick if I have to, but I would much rather stay home with a movie, cup of tea, and create a make-shift cocoon with electric blankets.

The past week has really tested my self-proclaimed “hermit ways”, forcing myself to be out and about, being social and wearing clothing that wasn’t covered in paint or had elastic waistbands. I traveled back to my Alma Mater, Millersville University for a student’s junior recital (he did awesome!) on Friday evening, stepping foot on campus for the first time in about 12 years. I went ALONE, too! It was glorious. 35 minutes driving to and from each way in complete and utter silence was literal braille to my ears. While at MU, I was able to see a lot of familiar faces and I met many new ones. I spent about 30-45 minutes chatting with people I knew and some that I didn’t know, which was so socially exhausting for me. Most of my days consist of me talking to my dogs or children, so I often forget how to speak to other adults and my brain feels fried after awhile. In the midst of these conversations after the recital, I had several of those familiar faces say “I don’t know how you do it” to me on numerous occasions, in reference to working, maintaining the house, managing two kid’s and my own appointments and balancing everything else on top of it all….especially with Derek being so heavily focused on work and starting up the new Autism center that his company has opened in a suburb of Lancaster City. He is out of the home working a lot, and works late a few nights per week, leaving me with both kiddos alone (or with Greyson’s staff if he has people scheduled).

So what is my response when the question is asked? I used to always look for Derek to help make the answer less awkward or to make it not sound like I am complaining, but recently I have been changing my answer to the infamous question. I allow my humor to take the lead and often reply with a fun “lots of coffee, prayers and anxiety medications.” It gets a good laugh and it tends to move the conversation onto a different topic, typically funnier and lighter in nature and all is good. Seeing the positives in our situation has not always been easy and absolutely takes work seeing the good things in our day-to-day. Honestly, I’m not even sure when my mentality switched from “worse case scenario” to “taking things one step at a time”, but it has really made my mood and my physical health better overall.

I don’t need to preach to the choir and tell you all how much stress negatively impacts the human body, especially when it comes to hormones and mental health. When our lives were revolving around chasing a diagnosis for Greyson, and I was obsessing over finding him the best care, I was absolutely miserable. When COVID hit, we decided we weren’t going to take him to hospitals or specialists, etc. to avoid the possibility of being infected, so we took a nice long hiatus from all of that for about 2-3 years. Even more recently, Derek and I try to keep Greyson’s medical appointments to a minimum if we can, seeing the neurologist once every 3/6 months and the psychiatrist every 4/6 weeks. Keeping these appointments to a minimum is important so we aren’t throwing off his schedule, Derek’s schedule or causing me an increase in anxiety or stress.

Now a few weeks ago, Greyson began to show signs of choking a lot while he was eating. He has always appeared to have minor issues with eating when he would shove too much food in his mouth, but this was starting to happen even with the smallest bites of food. I called the CHOP feeding clinic to get him into the feeding therapy program and we were placed on a waiting list for new intakes, but I was informed the wait would be for a while. Since then, he is being closely monitored by 1 or 2 staff when he is eating, food is being cut up in smaller pieces and he is encouraged to drink after eating something on the more dry side, so it doesn’t get stuck in his GI tract. About a month ago, Greyson was seen in office by the neurologist for a routine check-in and I had informed her of his swallowing issues, the suspected headaches we thought he was having, loss of balance/coordination, and the increase in his absent seizures. She suggested that we do another round of MR Images so that we can make sure there wasn’t another cause of his migraines or his seizures.

So, we pack up the car and Greyson, and make a hunger-filled trip to Philadelphia at 7 am on a Wednesday, right in time for rush-hour traffic. Similar to other posts with MRIs and sedation, Greyson did very well, with minimal issues. He was scared as they wheeled him into the room where the MRI was taking place and was attempting to reach for Dad and me, and it made leaving him extremely difficult and even more sad when they put the little mask on him and made him fall asleep. Like his previous MRIs, we were told that we could expect about a 30-45 minute procedure and that we would be called back as soon as he is back to his room. Well, it was NOT 30-45 minutes that we waited- It ended up being just about 2 hours. By the 1 hour mark, I was already getting nervous and was ready to start pacing, but by 1 1/2 hours, I was nearly sweating. Derek was in line to ask the receptionist for an update when we got the call that we could come back to the room to be with him. We hightailed it back there. Coming out of anesthesia this time around was a bit rough for G- he didn’t get sick, but it took a very long time and he was extremely tired and uneasy on his legs for quite some time. When we got back to the car, he was back asleep within 15 minutes and slept just about the entire way home.

My phone rang around 8:10 am in the midst of me getting myself and the kids ready for school. The caller ID said CHOP Neurology and I was going to let it go to voicemail, assuming it was the anesthesia team, calling to make sure that Greyson was back to his normal self, but I had a gut feeling it wasn’t. It was his actual Neurologist. She has never contacted me via phone before, let alone before 9 am, so I knew it was important. She was calling with his MRI results. Phew. Glad I decided not to be a typical Millennial and answered the phone! Basically, Greyson’s white matter brain disease (PVL or brain damage caused by lack of oxygen at birth) has not progressed, nor has it improved. This likely means that he will always have the damage, but it most likely will NOT progress into anything further as long as there are no additional injuries to the brain.

What the MRI did show was a smaller than average size corpus callosum and cerebellum sinuses that came to a point at the ends, rather than a rounded edge. Lastly, the main thing that the MRI found was his cerebellum was Chiari Malformation Syndrome. This particular malformation is almost always congenital and present at birth, though often not found on imaging until adolescence or adulthood. The symptoms that accompany this particular condition are: headaches, difficulty with balance and coordination, dizziness, vertigo, muscle weakness, numbness of the limbs, insomnia and daytime tiredness. But the one specific symptom that stuck out the most to me when I was looking into this, was difficulty with eating and swallowing, often leading to issues with choking on food or drinks having the sensation of “going down the wrong pipe”.

So what does this all mean? Your guess is as good as mine- HAHA. Our next steps are to see the neurosurgeon team at CHOP (same crew that did his VNS implant) and have him evaluated. We are also having our genetics tested again in the newest and most detailed testing available, in hopes that we can find some sort of new mutation. Whether we find a new mutation in the STAMBP gene that we already know is a mutated gene he carries, or a new one is found, we are really optimistic we could get some more answers from a more recent testing, in addition to this MRI. We are unsure of the recommendations and treatments available for the Chiari Malformation, but we will find out once we meet with the neurosurgery team. Stay tuned for updates- I should have known we couldn’t stay calm, cool and collected here for long!