In preparing for the part of my life I’m about to write about next, I’ve been reading my old journals and looking through old birthday cards from my mom. You may be shocked to learn that I have every single birthday card I have ever received in my entire life. My mom started saving them for me starting with my 1st birthday and I have continued the tradition. If you are reading this, please know that if you ever gave me a birthday card, I have it. Unless you are my former step-mom…I lost those cards…in the…ahem…trash. Anyway, not only have I been reading a lot but I’ve also been crying a lot. It’s one thing to remember things in your head. It’s another thing to read them and re-live the memories and the feelings behind the memories. I’ve been dreading writing about this time of my life because I knew it was going to be hard on me emotionally. My husband questions why I’m doing this to myself. Because I enjoy reliving painful memories? No, not particularly. So what do I get out of it? I guess I feel amazement at my resilience and my strength to move forward despite being thrown one of the most difficult curve balls a child can face. (And I do believe that a 16-year-old is still a child.) I read a quote today by James Van Praagh that inspired me to sit down and start writing despite my dread. It said “Difficult roads often lead to beautiful destinations.” It reminded me of something I wrote last September for myself. I wrote “Although the journey has not been easy, I am grateful for every step it took to get here.” So instead of looking back with only sadness, I need to look back with gratitude as well and think of my presently beautiful life.
|Courtesy of James Van Praagh|
Whenever my parents would announce that we were going on vacation to Argentina, it was like they were telling me I had won the lottery. I was always so happy and excited – especially to see my family – my aunts, uncles, cousins, and second-cousins. It’s funny, even though I hardly knew those relatives, I felt very close to all of them. I loved them just from hearing about them so much from my parents. It made me feel like I knew them. It also helped that they treated me with love from the very first day they met me. They embraced and accepted me into the family like they had known me all my life.
|March 1986 - My 16th and final|
birthday with my mom
|June 15, 1986 - My mom's 61st Birthday and just|
nine days before our trip.
She was a huge Laker's fan hence the cake.
I didn't notice it then but I see now how very ill she looked
|July 1986 - Buenos Aires at my Aunt's house|
As I’ve mentioned before, I never knew what was wrong with my mom other than her platelets and white blood cell counts being abnormal, her legs swelling, and her history of hemorrhaging and then requiring blood transfusions. I was never given a talk about my mom’s condition. Honestly, I don’t think my mom knew her own condition. I remember just a month before our trip; something happened that caused me to become extremely upset. It was completely unrelated to my mom. I was sitting at our kitchen table, crying profusely; unable to communicate to my mom the reason I was so upset. My mom got very worried and scared seeing me so distraught and her very first comment was “What’s wrong??? Am I dying?! What do you know?!” I became irritated that she assumed it was about her although I laughed with her about it later. So that is what makes me think that she wasn’t aware of the details of her own condition.
Blood screening in the 60’s, 70’s, and 80’s was not what it is now. During one of my mom’s various blood transfusions, she contracted the hepatitis C virus which turned into chronic hepatitis C which can lead to Cirrhosis or Liver Cancer. My mom had Cirrhosis, a diagnosis I didn’t learn until after she died.
While writing this, I decided to do a little research online as I am completely uneducated on this subject. Here is what I learned:
- Effective blood screening for hepatitis C virus (HCV) did not become available until 1992.
- The name hepatitis C didn’t even exist at the time my mom had it. It was called Non-A Non-B (NANB) hepatitis. “It is now believed that approximately 90-95% of cases previously classified as NANB hepatitis were actually hepatitis C.” (news.medical.net) It wasn’t until 1987 (a year after my mom died) that the CDC discovered the hepatitis C virus.
- The Veteran’s Affairs government site says “Disease course is slow, with the majority of patients showing few signs or symptoms during the first 20 years of infection.”
- Per the CDC site “Chronic hepatitis C is a serious disease than can result in long-term health problems, or even death.” And this…”the majority were likely infected during the 1970s and 1980s when rates were highest.”
- There wasn’t any type of treatment available at the time of my mom’s illness. From what I read, the first treatment approved by the FDA for hepatitis C didn’t happen until 1991. The first real breakthrough in treatment though wasn’t until 1998.
It makes sense to me why my dad decided to take my mom to see doctors in another country. It was a last desperate measure to maybe find some answers for my mom’s heath. I don’t remember (and don’t have written record in my journals) how many doctor visits we made during our trip but I know it was many.
On August 19, after being in Argentina for nine weeks and just 12 days before our scheduled departure date, my dad informed me that we were extending our trip for one or two more weeks. I don’t think he gave me a reason and honestly, I probably didn't ask. I was just excited to have more time in Buenos Aires with my new boyfriend. Yes, you heard me. I actually did find a boyfriend during that trip. (I will call him Robbie.)
As strict as my mom was in California, she was the opposite in Buenos Aires. I think one of the many reasons I loved going to Argentina was because my mom treated me differently there. She gave me liberties I didn’t have here. Back home, she didn’t even let me go alone with friends to the mall. In Argentina, when I was 12, I was allowed to walk 10 blocks to a neighborhood “athletic club” with my cousins who were my age and younger. When I was 13, I got to spend an afternoon of shopping with my parent’s friends’ daughter who was only five or six years older than me. I also went to the movies alone with that friend. When I was 16, I got to spend an entire day as a visitor at another friend’s school. That same friend had a big Quinceñera and I was at her party until 4:30AM without my parents. It’s no wonder I loved Argentina so much. So, when my aunt’s neighbor, Robbie, asked me out, my mom and dad said yes. And I wasn’t even all that surprised. Because in Argentina, my mom let me have a different kind of life.
Just five days after Robbie asked me out, he asked me to be his girlfriend and I accepted with my mom and dad’s blessing. Part of me has always wondered if my mom agreed to all of this because maybe she knew she was dying. I have often thought that it was her final gift to me and maybe to herself too. She got to witness her little girl’s first boyfriend and how extremely happy that made me. She was letting me do some growing up; a wish I knew she had said many times over that she hoped to live to see. Maybe she also sensed how much more growing up I was going to have to do so suddenly, so soon.
This post has definitely not been easy to write. I’ve had tears in my eyes and a knot in my throat for most of the time writing it. I’ve had to take breaks, get up, walk away, and come back to it over the course of two days. I keep thinking “Crap. If I’m this emotional for just these parts of the story, what am I going to be like when I actually have to write about her last hospital stay, the ICU, her coma, the day she died, her funeral, and the aftermath. Do I really truly want to continue with this story? What am I gaining by doing this? It all seems so frivolous.” I talked to Maggie (my BFF) about it. She told me she was proud of the work I’m doing. She knows it’s hard. She said that after reading my last post (about her) I inspired her to write a letter to her daughter in her journal. And then she said something I hadn’t thought of…that I am helping every person who reads my blog. Wow. That hadn’t occurred to me. She then told me that I’m the bravest person she knows. (I could cry right now just writing everything she said.) So, I will continue on with my story because I have courage and I know that ”although the journey has not been easy, I am grateful for every step it took to get here.” And 'here' happens to be a beautiful destination.