It’s Been a While…

Haven’t written in a while. 3 months to be exact. This new year started and it knocked me out cold.

At first it was Nicky’s wounds. They were BAD. The word “bad” doesn’t even give it justice, they were ATROCIOUS!
So, I spent a great deal of time researching, googling, I couldn’t think of anything else but help my son. Then Connor started swimming, so I was his Taxi to school, to swim, to karate etc and I decided I was going to practice the piano every day while I was waiting to pick him up. I put all my focus on that. I had fun, but it was getting hard. When the hands do very different things it’s just… aarghhh. I have to practice the same piece a thousand times and I still can’t get it right. So, now I took a break from it. Will pick it back up in a little while.
It’s not that I didn’t have time to write, I just… I don’t know… I didn’t feel like I had anything to say. And of course, after that, this whole Corona Virus stuff occupied my mind. My family is in Italy. I was worried about them. And…when you have a child with a rare condition, a child with a LOT of wounds, you have to take this shit seriously. I worked really hard to keep my son healthy for 23+ years, I wasn’t going to let anyone tell me this is “just like the flu” or any of this other nonsense. COVID-19 is far more contagious than the flu and there is no vaccine. My son’s life means everything to me. I will not let this virus take his life. Not on my watch.

So, I pick up the pen… or, the keyboard, and I think, yes, I have something to say:
Isolation is a piece of cake for me. Heck, Isolation is a Piece of Cake for all of us. Nicky rarely leaves the house, my husband hates to go anywhere and poor Connor…. he understands. He gets it. He knows that if he goes anywhere it’s his brother that will pay the price. So, we make do.

BUT, The reason why it’s a Piece of Cake for me it’s because I’ve been doing it on and off for Nicky’s entire life. The toll on my mental health has been extreme at times, so I understand why it’s a hard go. Does everyone now understands the plight of stay-at-home moms? I hope so. When you’re home all the time is very easy to lose all sense of who you are – or were – before you became a parent (or a parent of a child with special needs as it was to me), because your focus is totally on your child’s needs. That’s especially true if you’ve also had to give up your career. Even if you do manage to hold on to your job, the struggle with finding reliable disability-friendly childcare can be a nightmare. It was for me. Whether you work outside the home or not, your exhaustion will amplify any depression or anxiety you may be already feeling.  And if money is also a worry…you can imagine (or know) the strain many parent carers are under. On top of all this, you may also be struggling to get educational, health or social care support for your child. This ongoing struggles can have your emotions up and down and at times.

Being isolated is lonely, but, as I learned last year, not more lonely than being stuck in the hospital. I can still see myself being in that hospital room with Nicky, who mostly slept, surrounded by white walls, the neon lighting, the smell of disinfectant penetrating my every cell and piercing my heart. Being in the hospital took its toll. I wasn’t eating well nor taking care of myself. I put on weight.
I thought I was going crazy… so I developed a routine. At a certain hour I would watch Netflix on my iPad, another specific hour I would go down to the cafeteria, another I would play “Best Fiends” incessantly while quietly listening to Judge Judy or Judge Mathis. I had books to read and bandages to change. It kept me sane.

At home I have a very similar routine, books to read, bandages to change, TV shows to watch, cleaning schedule, dinner to prepare… and, well, Words with Friends is not going to play itself! I have my coffee in the morning and wine in the evenings and we play and joke around. One day looks like another, groundhog day over and over again.

We cannot cure, change, or control the terrible things our loved ones endure. The only thing we can control is our thoughts, our words, and our deeds. 

Love & Light,