Where I’ve Been.

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The main focus of this post will be to explain what has happened to my family in the past three months.

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Let’s go back to February. Everything was as usual. I was in New York back at school after winter break, my mom was in Florida declining from Huntington’s Disease. But yet we still went day by day like everything was how it had been every other time. This time though, my mom’s decline started to take a turn.

For unknown reasons in late February, early March, my mom’s symptoms had started to worsen. She was really unable to swallow now, and it was very hard and tiring for her to talk. But other than that, my mom’s spirit was ALWAYS high.

When you’re dealing with a disease for almost seventeen years you kind of get this feeling that even though you know it is fatal, that the fatality will never happen. That is how I felt. I knew my mom was worse than before through word of mouth from my dad and sister, but I never stopped to think that this could be it.

Mid-March I got a call from my dad, and missed it. He left a voicemail and sent me a text. I decided that I would read the text first. It was something along the lines of him asking where I was and if I could talk. I remember how I felt after reading it. It wasn’t an alarming text at all, but it immediately sent chills down my spine, I knew that it was not going to be good news. Right after I read it I called my dad, without even listening to his voicemail. The conversation started out like any other conversation I have with my dad. Where are you, what are you up to, how is everyone? Then my dad started to cry and tell me that my mom really, really was not doing well and he thinks this is the end and I should hop on a plane and come home IF I wanted to(I was going to be going down for spring break in about 10 days anyways.) At this point I am in my boyfriend’s bathroom silently crying my eyes out because he had friends over. After hearing all the news my dad was telling me and exchanging ‘I love yous” with him, we hung up. My boyfriend knocked on the door to see if I was okay because I had been in there on the phone for about a half hour and he had no idea what was going on. I came out of the bathroom telling him I was not okay with tears running down my face.

I told my boyfriend, his parents, his sister and aunt and right away made the decision to change my flight to get home. With help from my boyfriend’s mom, I was now scheduled to leave in two days. The night I heard all this news was terrifying, and sad, but the days before my flight I was fine, it all seemed fake.

I landed March 18th, was picked up from my sister, and on my way over to my house. Not nervous, not scared, nothing, all because it still did not seem real. Overtime I visit my mom at home I take what I like to call a “Surprise, I’m Home,” video. This time was not any different, I started up my phone and entered my house, straight into my mom’s room with a huge smile that was soon wiped off of my face. My mom looked nothing like how she did the last time I had seen her in January. I quickly ended the video, sat with mom for about five minutes and left the room crying. She wasn’t the person I knew a few short months ago. That is when the fear and nervousness hit.

Long story made a bit shorter, my mom only made it two more days. She sadly passed away on March 20th at 3:20pm, with her one hand in mine, other hand in my dad’s and my sister sitting right next to her. It was the single most terrifying and depressing day of my entire life. Never in my 21 years of living did I think this would actually happen. A lot of people say to me, “at least you knew it was coming and you weren’t blindsided.” But the reality of it is that the word ‘fatal’ never occurred to me. For the longest time I thought my mom was in ways ‘immortal.’ Stupid, I know. But I did not think this disease would take her.

So that is where I have been and why I have not posted. I did not know how to say it, or if I even wanted to say it. I am in the grieving process and in a lot of denial, but I know with time I will accept what has happened and from that I will grow as an individual.

There will be more posts from here on out, about Huntington’s Disease, how I am dealing with my mom’s passing, my mom in general, the gene silencing post I promised, as well as other interesting (hopefully) topics.

-Gia

I know this post is already really long, but I thought as a nice closing, I would share with you the quote on my mom’s mass card:

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“Don’t grieve for me, for now I’m free, To follow the path God made for me. I took His hand when I heard Him call. I turned my back and left it all. I could not stay another day, to love, to laugh, to work, or play. Tasks left undone must stay that way, For I found peace at last, that day. If my parting has left a void, Then fill it with remembering joy. A friendship shared, a laugh, a kiss, Oh yes these things I too will miss. Be not burdened with hearts of sorrow. My wish for you is the hope of tomorrow. My life’s been full, I’ve savored much, Good friends, good times, a loved one’s touch. Perhaps my time seemed much too brief, Don’t lengthen it now with undue grief. Lift up your heart and share with me, God wants me now—He’s set me free.”

{Rest Peacefully Mom; 04.24.1964-03.20.2016}

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