MY SURVIVOR STORY BLOG

I was 14 years old when my dad had his first stroke. Fortunately in 3 months he made a 90% recovery. But for his safety we were no longer able to go skiing and hiking like we once did. I often thought about the times when he taught me to ski around when I was 3 years old. Although I was grateful that he was able to make almost a full recovery I still felt incomplete knowing our lives were forever changed.

     However, only a year after his first stroke he suffered a massive second stroke. This time was different. He spent 2 weeks in the ICU after emergency brain surgery before he was transferred to a full time care facility. Although he couldn't speak he made it clear that he didn’t like being in the care facility and wanted to return home. At first being at home was overwhelming for my mom as she had to learn how to care for a stroke recovery patient. Right about this time my brother was returning to school for his senior year of high school and I was joining him for my freshman year. 

In the first few weeks, we had to learn everything from scratch: how to understand his slurred speech, how to change the feeding tube, how to use a hoyer lift and take him to the bathroom or transfer him to a wheelchair, and help him with his physical therapy exercises.

This was just the beginning as the teen of a stroke survivor.

WHY I CREATED THIS WEBSITE

-2 Corinthians 1:3-4

I built this website because I know what it feels like first hand to be in a tough situation and not know where to turn. When my dad had his stroke everything changed, and it was hard to find resources that really understood what I was going through. I wanted to create a space where others who might be in similar positions can find stories they relate to. By creating these blog posts I hope to offer some comfort and support for other teenagers who might be experiencing something similar. Whether it’s an ill parent, or someone just trying to get through some tough times, I believe sharing experiences can make a difference. There’s something powerful about knowing someone else understands what you’re going through. I know that if I had something like this it would’ve really helped me feel less alone, that is why i’m sharing my stories here. As 2 Corinthians 1:3-4 reminds us, the comfort we receive can help us comfort others. My hope is that this website becomes a source of strength, encouragement, and understanding for anyone who needs it.

A DAY IN MY NEW LIFE

-list of all activities in a typical day.

A typical day usually starts with morning routines. I first help my dad get out of bed using a hoyer lift, depending on the day this is often followed with some sort of breakfast usually something simple. From noon to evening I assist with all other necessities that require help. For example, managing the feeding tube, hygiene needs, using the restroom, and at home physical therapy activities. To end the day I administer daily medications and sometimes make a quick dinner. The biggest difficulty is being on call at any time to provide assistance, often times I’m doing something personal like homework or studying. Having to be constantly available is something that’s difficult to manage at times but the more I do it the more I learn to manage. Physical therapy activities are also difficult to do. Each PT session sometimes ends up lasting 1 or 2 hours,

TAKING MY DAD TO PT THE FIRST TIME

-

LEARNING TO USE ALL THIS NEW EQUIPMENT

-overwhelming

After my dads seconds stroke which took away his ability to move I had to learn how to use various different equipments. This drastic change often felt overwhelming since there were several complex parts I had to understand. It often felt like an endless cycle of reading manuals and troubleshooting errors. This included the hoyer lift, transfer net, assisted standing frame, feeding tube, electronic wheelchair maintenance, pt cycling machine, and several other pieces of equipment. There was a pretty overwhelming learning curve to get the hang of it but eventually I learned to operate all these things with practice and time. Despite the challenge, I began to appreciate how each piece of equipment played a vital role in my dads daily comfort and mobility. With practice I was able to master the ability to use them effectively and seeing how they helped my dad it only reminded me how important the equipment was.

LEARNING TO UNDERSTAND MY DAD AGAIN

-figuring out what he wanted

The second stroke severely impacted my dads speaking ability. In the ICU after surgery I remember being unable to understand anything and it was hard to understand what he needed or was trying to say. In the early stages I sometimes wondered if I would ever be able to understand him again. The change was hard to get through at first not being able to remember what his voice sounded like. As time went on however, I eventually began to understand some of the distorted speech. This only became natural after about a year. Im not exactly sure whether it was my listening skills that gave me the ability to understand or his improved speech. Ultimately, there are still communication barriers that exist and words can sometimes take several repeats but as time goes on this is something that only continues to improve everyday.

REFLECTION-ADAPTING TO A NEW LIFESTYLE

-small victories

Looking back on my dads life changing stroke I sometimes cant help but wonder what life would have been like if it never happened. Although these feelings and thoughts are strong being able to overcome and adapt in the face of adversity has only benefitted me as person. I know first hand the struggle of taking care of an impaired loved one, especially a stroke patient. A major lifestyle change like that can definitely feel overwhelming at times and this is something I still experience occasionally. However, these challenges taught me resilience and how important it is to adapt. I’ve learned to be proud of the small victories in my dads journey to recovery. For example, I remember watching a video of a conversation with my dad from a few months ago. I’ve noticed his speaking ability improved slightly. Simple things like that are what encourage me to stay motivated despite a drastic change in lifestyle.

FINDING SUPPORT

-a big challenge

Finding support has been one of the biggest challenges for me personally. After my dad’s stroke it felt like the world just flipped. It was really hard to navigate this new reality, having to watch my dad live with difficulty everyday. Support didn’t always come easily, and it often felt like I was dealing with things on my own. But through it all, my mom has been my biggest support system, She was the only one who truly understands what it’s like. She had to support my dad but also make sure I was okay. Despite all this she somehow still found the strength to hold everything together. Whether it was just a simple talk or deep conversations she always managed to find the time to support me. Her support has taught me the importance of staying strong even in the face of adversity.

HOW THIS AFFECTED MY MOM

-feeling alone

-My mom’s life changed in an instant when my dad had a stroke. She became a full-time caregiver, managing his medical needs, daily tasks, and keeping the whole family together. The emotional weight this brought onto her own life was drastic. She often had to set aside her own needs for everyone else’s. The emotional toll was just as heavy. Watching someone you love struggle is something thats difficult to see, but my mom stayed strong, finding moments of patience and joy amid the challenges. Her dedication has been inspiring and has taught me the importance of supporting caregivers. Caregiving is an act of love, but it's also a responsibility no one should carry alone.

HOW THIS IMPACTED SCHOOL

-distraction

-When my dad first experienced his stroke I wasn’t aware of how much it would impact my grades and school work. Between helping my dad and dealing with all the changes at home, focusing on my assignment became more difficult. Missed assignments, late submissions, and not being able to study properly were all reasons my grades suffered. It became even more difficult to keep everything straight and up to date because of added stress from the situation. As time went on, I slowly started to balance things out. It’s been tough, but I'm learning to adjust and prioritize what I can. Even though my grades suffered, I realize that adjustment and staying strong are whats most important.

REFLECTION-IMAGES ON THIS WEBSITE

I chose these images because they remind me of the things I used to do with my dad.

-thinking of my dad on a ski lift

-what reminds you of your loved one who is a stroke survivor? send us a comment/your favorite memory. Also feel free to let me know if there are any questions you’d like to ask me.