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The Rayni Pledge - Live in the Moment

Updated on January 3, 2013
Rayni "toilet lid surfing".  She posted this on her Facebook page with this caption" My Day- 5 finger pricks, 1 sub-q stick,and toilet bowl lid surfing" It was not a good day, but you can't tell that from her smile and that's just how she was.
Rayni "toilet lid surfing". She posted this on her Facebook page with this caption" My Day- 5 finger pricks, 1 sub-q stick,and toilet bowl lid surfing" It was not a good day, but you can't tell that from her smile and that's just how she was.

What to say?

I am not as good as many at putting into words what I really want said. Anyone that personally knew Rayni and the illnesses from which she suffered knows that she lived in the moment. She filled every moment with something grand (except when I was making her do her homework or clean her room.) The first things I think of as examples of her living in the moment are her bravely going to high school and her "putting herself out there" by talking to someone new or sharing something personal about herself with others. So, I suppose, for Rayni, living in the moment, meant she had to be brave. And, she was, she was so brave.

Rayni hanging out with friends at a Pulmonary Hypertension Conference in Florida during the summer of 2012.
Rayni hanging out with friends at a Pulmonary Hypertension Conference in Florida during the summer of 2012.
Rayni and her cousins making a visit to the doctor fun.  Cousins or not, Rayni, unless really feeling badly, was always laughing in the exam rooms while we waited for the doctors.
Rayni and her cousins making a visit to the doctor fun. Cousins or not, Rayni, unless really feeling badly, was always laughing in the exam rooms while we waited for the doctors.

Tall Buidings

Most of her childhood, she was home-bound because of her illness. She was able to attend part of a day (with mom in the back of the classroom) until, due to changes in her medications, in the 8th grade, Rayni was able to go to school (without mom in the back of the classroom). She attended one class a day and cherished every moment. Although children knew her, they weren't close to her. She hadn't grown up experiencing life like they did and that made her different. She was beautiful and kind, but she was the size of an 8 year old at 13 and, even though the other children were typically kind, most of them didn't know how to interact with her. But Rayni didn't complain. She just wanted to go to school. When Rayni started 9th grade - High School - she attended 2 classes at the school. One class she had with one of her closest friends. She and Savannah had been friends since they were 3 years old. That made school even more special to Rayni. Rayni said to me in 8th grade, the kids sometimes "seemed as tall as buildings" to her, but wow, those kids in High School, they were big, they towered over my little girl. But, she boldly walked away from my car into that High School filled with teenagers, some of whom were twice her size and not nearly as compassionate and kind as she was. She learned a lot in 9th grade - a lot of stuff she hadn't been exposed to - among them bad words and sexual issues. But, she and I talked about those things and Rayni had a strong sense of what she thought was right or wrong. One thing I noticed she didn't do was judge the person who did the things she disagreed with. In fact, she'd often tell me of talking to them in class. She always made me proud. In 10th grade, Rayni went to 3 classes and an academic study hall. Going to school was one of her favorite things. And, although I wasn't in the classroom with her, from our conversations, I think she just enjoyed watching other kids, just experiencing a part of life she hadn't experienced. Each time I watched her leave my car and walk into the High School among those other children that were so different than her, I was amazed at the beautiful, brave child that I proudly was given the gift of calling my daughter. I am quite confident I could have never been so brave. But, she did live for the moment, or the moments. The small ones and the big ones that taught her something new or showed her something she'd not seen before.

Taking Chances

Rayni on the train to Chicago.  December 2011, just the 2 of us boarded the Amtrak at 2am and set out for a city we'd never been to.  We had a blast.  Rayni discovered she had a talent for hailing cabs.
Rayni on the train to Chicago. December 2011, just the 2 of us boarded the Amtrak at 2am and set out for a city we'd never been to. We had a blast. Rayni discovered she had a talent for hailing cabs.

Hollywood Baby!

Because of Rayni's pulmonary hypertension and immune suppression, we didn't fly.  We'd pack a large suitcase full of medicines and medical supplies and locate hospitals along our route - just in case.  But, those car trips allowed us to see so much.
Because of Rayni's pulmonary hypertension and immune suppression, we didn't fly. We'd pack a large suitcase full of medicines and medical supplies and locate hospitals along our route - just in case. But, those car trips allowed us to see so much.

Mom, on the Other Hand

So, as Rayni's mom, living in the moment was a very different concept to me than to her. It required some bravery, some faith, some hope and some education. Rayni's illness was extreme. She had very low lung function, she lacked a complete immune system and, because of past treatments, she was at extremely high risk of severe complications and death if she was exposed to chicken pox, mono/EBV, the flu, and even things a simple as a cold. One thing I'm sure of is Rayni beat the odds. Her life was longer and filled with quality that many doctors were amazed by. One thing that I'm not sure of is, as Rayni got older, if she got better or she just adapted so very well to living with her illness. When she was put on continuous iv therapy when she was 3 years old, we were told she would never come off until lung transplant. She was on oxygen 24 hours a day and had a feeding tube. At 3 years of age,I was told my daughter would likely need a lung transplant in a matter of years and that there was a 50% survival rate after 5 years post transplant. I remember collapsing in the kitchen floor when I did the addition 3+5. That was possibly the longest I would have my baby here on Earth and as sick as she seemed at the time, I was afraid it would be shorter. Every decision I made for Rayni from the time she was born until she was received by God was a decision to balance quantity with quality. I was protective, some thought overprotective at times. But, then, I made choices to take her places and let her do things that some thought excessive. Going to public school was risky for Rayni, but when she came off her iv medication it reduced the risk somewhat. Serious meetings were held at the school to put into place as many realistic precautions as necessary to protect her but that would still let her experience that part of life. And, I won't pretend it was a decision I made and then didn't worry about. I knew when I watched her walk away from me into the High School that she might come in contact with an illness, that she might pass out if something went wrong, that she might be hurt in the hallways with the bigger kids, that she might be made fun of. I thought of those things everyday. But, going to school was such a joy for Rayni and that decision I have no regrets about. I went through the same process when deciding whether to let her attend a public event - a concert, the movies. We just had to take precautions. I had to balance hoping for a life for my daughter and being realistic about her illness. With each decision I made, that was on my mind. Things like making her do her online schooling, cleaning her room, punishing her when she didn't do those things. I chose to hope for life and so I tried to treat her as normal as possible and she was made to do those things and punished when she didn't. If I had known I would lose her at 15, would I have done everything the same - well, absolutely not. I would have done some things differently. But, no one knows what comes next in life. We just have to try to do the best we can. There are things I did right and there are things I could've done better, I think it's important to remember people can't live if they don't live with hope and choices need to be made considering the bad, but expecting the best.

Because of her medical issues and the level of care she needed, money was tight. But, every summer, we would take a vacation to a different part of the country. We saved change all year, would use tax refund money and apply for scholarships so we could attend a medical conference each summer. Somehow, even though often I didn't know how we were going to afford it, we made those trips and Rayni saw so many things all over the country. Those are the experiences she wouldn't have had if I had not been realistic about her illness. I am thankful for those memories with her and thankful she had those experiences.

Rayni and I would eat desert first, go out at 2 am and watch meteor showers, decide to go into town for pizza at 10 at night, eat popcorn for breakfast, jump in water puddles, drive north to try to see the Aurora Borealis in the middle of the night. Those are things we did and I will cherish those memories forever.

There are times I can look back at and say "I wish I would have done that differently.", or "I wish I would have made that a priority.", or "I wish I wouldn't have been so picky about that, or "I wish I wouldn't have been so strict." But, there is nothing I can do about that now.

Living in the moment when Rayni was here was so much fun. And, enjoying life with her filled me up everyday. But without her here, I live in the moment in very different way. I struggle to make it through each moment, I struggle to suppress the bad memories and keep the memories of her laugh, the way she rolled her eyes at me, the way her hair felt, the way she interacted with others, and all the other things that made her so wonderful to me.

She liked me most of the time.  Definitely not all the time.
She liked me most of the time. Definitely not all the time.

Part of a Team

Rayni became involved in her care and the decisions related to her illnesses at a young age. Of course, I always had the final say, but she and I were a team. Especially in her teenage years. She had a big say in what living in the moment meant. We had many conversations about the risks and benefits of choices we had to make. Sometimes we disagreed. Maybe we disagreed because she didn't really think the issue was directly related to her mortality or maybe we disagreed because she had a grasp on her mortality and wanted to experience life. Or maybe, we just disagreed simply because she was a teenager. The latter is most likely, although she had a keen awareness of her mortality. Sometimes, I allowed her to do something I would have rather her not, but within my guidelines and with lots of suggested precautions. She and I did our best to make good decisions. I think together, we made a good team and she was able to do so much.

Enjoy Life

Live in the Moment
Live in the Moment

There's So Much More

But, The Rayni Pledge of Live in the Moment is about realizing how precious your life is and how precious the life of those around you are. It's about recognizing the miracles and being thankful for them. It's about recognizing the opportunities around you and being brave enough to take advantage of them. It's about making you and the people around you smile and doing what you need to do to take care of yourself and others.

There is so much more I could say about Rayni living in the moment. She just enjoyed life. She taught me to live in the moment. She made me laugh every day.

I would like to invite anyone who wants to share a story about Rayni living in the moment or a story of your own about how you're able to live in the moment.

Thank you for being a part of the Rayni Pledge. Thank you for caring about Rayni and her memory.

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      Beth 3 years ago

      What an amazing tribute! Will share!

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      star 2 years ago

      I had never seen this but so glad I found it. So much goodness and wisdom. Thank you for all you do for so many. Most of all, thank you for sharing Raynis story and your heart.

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