The first of these lessons learned that I’m going to share came from my daughter. Even though she’s my middle child, I’ve decided to share her story first because out of all of my kids, it is Mariah that you are all most familiar with. I know that I have some new followers who may, or may not, be aware of the medical struggles that Mariah has faced over the last few years. Rather than try to catch you up myself, I’ll let her do it for you. My kids started a vlog last year and Mariah used it to help raise money for the Medical Foundation that has helped to treat her by explaining a little about her story. If you haven’t seen it, check it out.
We also published a follow-up to share how the fundraiser turned out.
But to get a taste of the kids I know and love, you should the entertainment that I live with daily by checking out their Halloween tribute to Ghost Hunters last year.
So now that we are all caught up to speed, I’d like to tell you a story……
It was a few days after Mariah’s monthly infusion and although she was starting to feel better, she was still recovering. Her labs hadn’t been so hot the last few months and the doctors were now discussing the possibility of both adrenal and pituitary issues. It was evening time before I made my way to the mailbox but I found a letter addressed to both Mariah and I. I opened the letter and had it read before I even made it back to my front door. I was excited and torn all at the same time. Mariah had received an invitation to audition for Jr Teen Miss Nevada.
At first I was confused because Mariah had never been in a pageant or really known anyone who had and the auditions for this pageant were by invitation only. Do you remember back to the “Bowl 4 the Kids” fundraiser that Mariah helped with? Do you remember Miss Nevada doing the Build A Bear workshop?
Mariah had been referred by Miss Nevada!
Now while this may be an exciting opportinity for most girls, the decision to tell Mariah about this letter wasn’t easy. Mariah has had to struggle for many things and I knew that this would be just another thing her medical issues would get in the way of. But despite my need to protect her from the world, my philosophy of making sure my kids get every opportunity they deserve kicked in and I told her the news.
After calling to confirm that she would be attending the orientation, the first of many hurdles showed it’s face. The orientation was the same date as her next infusion, and considering how shaky her labs had been there was no way we could reschedule it. I let Mariah make her own decision on how she wanted to handle this situation. Instead of giving up she decided to see how she felt after the infusion. If she was functional, she would attend the orientation. You see, without this orientation she couldn’t be in the pageant.
The next few weeks flew by and we took her out to get an outfit to wear. She told anyone who would listen that she was going to this thing. She was determined. But then infusion day came and things didn’t go as planned. The first of that day’s hurdles was a bad reaction she had to the start of the infusion. She had to be medicated. Now asleep and unaware of what was happening around her, she didn’t know her labs were worse than the month before. A two day infusion would be needed.
By the time Mariah woke up she was at home and recovering on the couch. The pageant orientation was scheduled to begin in a little over three hours and she was just opening her eyes. Before she could muster the energy to even say a word, she felt that something was off. She looked down at her arm and realized she still had an IV line in. Panic set in and tears started to flow down her cheeks.
“But….. the orientation?”
I told her that I loved her and that sometimes, life just happens. I told her that I thought she should still go to the orientation. She is beautiful, with or without an IV line, but I would support whatever decision she made. Ultimately, the decision was hers.
“People will stare at me. The other girls will stare at me and whisper. I can’t even speak right, right now. They are all going to think there is something wrong with me.”
I took a deep breath as my heart broke. I reminded her that people ALWAYS stare at her. She is a beautiful, loud, talks to everyone and wears mismatched shoes. What’s not to stare at? And… there IS something wrong with her. Why hide it? She’s never been embarrassed before, so why start now? I told her that if she went to this orientation and she wasn’t chosen to compete, at least she could say she gave it her best. If she didn’t go, she would regret it and forever wonder what would have happened. That’s no way to go through life. Take chances and go after what you want because if nothing else, they are experiences that shape our character and give us stories to share with friends and family.
Then I walked away. That’s all I could do. She had to decid for herself. It took almost two hours but she finally made her decision.
“Can you help me do my hair and makeup? And do you have something I could wear that would cover my IV line? I want to be chosen because they like me and I deserve to be there, not because they feel sorry for me.”
Stay tuned for part 2 of this story. My lesson hasn’t even arrived yet and there is so much more to say……..
This is Mariah as we left for the Orientation