My friend Haylie died yesterday. I’ve gone from shock to anger to being numb and back to shocked, all in about 24 hours. I’m really not sure where this post is going, but I need to write it out, so bear with me.
Haylie had VACTERL, which is how I met her a decade ago. I have it as well – as does my husband, Mathies. For more information on VACTERL, please refer to this post on my former blog.
My stepdad is in the hospital. He has cancer. It sucks. On my way home from visiting him last night, my phone rang. I answered it when I was about two blocks from my house. When I saw who it was I think I subconsciously knew there was something wrong.
That’s when Liz (a VACTERL adult) told me Haylie had died. I pulled into my driveway and walked into my house, having this conversation about who I needed to call and what I needed to do. I told my mom, who was standing right in front of me asking what was wrong. I kissed my mom’s dog. I contemplated vomiting but decided against it.
I made a couple phone calls, one to a VACTERL friend and another to a VACTERL mom. I left my husband (who is currently living in his native Denmark while completing his Master’s) a voicemail to call me. (I ended up talking to him about 1 in the morning. I’m glad I was able to tell him before he saw it on Facebook.)
I finally cried around midnight.
Today for the first couple minutes after I woke up I forgot that she was gone. Then I looked at my phone and I saw the texts and the Facebook notifications and everything came rushing back. It took a monumental effort to get out of bed. I posted on Facebook about her services, in disbelief I was posting about her funeral.
Not having Haylie in our world anymore is like a swift kick to the gut. The world just feels darker. She taught me so much about love and life, all about Harry Potter, how to drown a Sim on The Sims and how to be brave. We shared an immense love of reading. We talked about fictional characters like they were our friends, like they were real people. She wanted to be a Child Life Specialist and was great with children. She loved her two nieces and she was so well loved by all children, especially VACTERL ones.
She was the first VACTERL person that Mathies ever met (that’s them!). She gave him confidence and support and I can honestly say that as far as I’m concerned, if he had never met her he would have never had the confidence and self esteem to be the man he is today. He’s an amazing man and a wonderful husband and I have her to thank for that.
I don’t think that I would be the person I am today without having met her. It sounds corny as hell, but it’s the truth. She never felt sorry for herself. She always had a smile on her face. Her lungs were crap but her spirit made her health problems seem irrelevant.
She made videos and posted them on YouTube. This is her channel. She talked about VACTERL, her favorite books and so many other things. Her vlogs saved her voice for us and I’m so grateful for that.
Her death reinforced how amazing our VACTERL family is. We support each other through so much, especially my fellow VACTERL adults. Although we all have different personal, cultural and medical circumstances – no two VACTERL people are exactly alike – we are the only people who know what we are going through, not just with Haylie’s death but with living with this condition. It’s a bonding experience, believe me.
My non-VACTERL friends and family have been so sweet and supportive. Ashley, who was one of my bridesmaids, texted me right after she read it on my Facebook about how her heart was broken for our loss. Emily, who I have known since preschool, was an ear when I needed one. My parents both immediately asked what they could do to help. My cousin Elizabeth sent me texts that made me smile and helped get me through today.
I’m leaving you with this picture of Haylie and I when she visited me in Missouri in 2008. We had the best time!
I could end this with corny platitudes about how I hope she’s in a better place and that I’m glad she’s free of pain and how Heaven is so damn lucky to be gaining an angel, but I won’t. Instead, I’m going to just say what she already knew:
I love you, Haylie Jones. Thank you for everything.