wish i may

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I used to work at Walt Disney World. The most magical place on Earth. The place where fairy tales come true. I went to work at Disney World because I was a believer in magic and wishes and happily ever after. I believe I was born that way.  A believer in all things good, and that wishes would come true if you wished hard enough.  I wished at every wishing well, fountain, 11:11, heads up penny, shooting star, first star of the night, and every birthday candle I ever blew-out. I was a believer.  A spread the word kind of believer. I believed that my wishes would come true and I would live happily ever after.

Last week, we took our summer vacation, not to the most magical place on Earth, but to Will and Faith’s grandfather’s house. That’s where I was when I realized it.  When I realized I no longer think about happily ever after. I realized that I’ve totally quit wishing. I’ve realized that some days I’m even afraid to pray.

There’s an outdoor mall near where we were staying that has a total Florida feel. Both the kids commented on the fact that it felt like we were in Orlando. Will was in a hurry to get to the candy store before it closed and as we were rushing to the store we went past a beautiful fountain. As we were going past Will commented on the fact that we used to throw a quarter in fountains for extra special wishes.  He said, I know we don’t really do that anymore, but I remember when we did. Will is a very sensitive kid, so I am certain he noticed the look on my face when he made this statement. So much so that he quickly commented, he was sure the owners of the mall just put those fountains there to get your money, so its good that we quit throwing our money in there.

 

I was quiet the rest of the night. I was trying to remember the last time I had made a wish. It had been a very long time. Too long for me to remember. I was so sad that night, sad that magical part of me had changed, sad that I was influencing my son from wishing at every chance he got. I’ve thought so much about it since that night and why I quit wishing. The answer is really quite simple. It’s not that I’ve given up hope. Because I have not. But my wishes have changed.  I can no longer wish for Wolverine Victories or Kate Spade handbags. I can’t wish that we can squeeze in one more vacation before the end of the summer or that my best friend can fly up from Florida. Now the things I would wish for make me hold my breath, not because I am about to blow out 38 candles, but because if these wishes don’t come true, there is no happily ever after.

Faith has been out of the hospital a month today. Ironically, she’s had a bad few days but hopefully we can turn things around here at home.  She has a bad infection on her skin, and she’s pretty uncomfortable. Her output from her ostomy has been high and she’s just very tired, all things that can lead to a hospital admission. The regime that we have her on at home isn’t easy. At night I have to get up every 4 hours to give her medicine and to change the fluid in her feeding tube bag. She is hooked up to a pole 13.5 hours a day and she gets fluid bolus every two hours when she’s not hooked up. It’s not an easy schedule to keep, but it’s keeping her home.

I went to dinner with a dear friend who happened to become a priest. He explained to me that childhood illnesses are so much harder on the parents than on the kids. He explained that they don’t know any different, but as a parent we do. Suddenly, our lives are nothing that we had wished for. Our children’s lives are not at all what we had wished for. We have to give up on the life we had expected to have and accept the new life that we are living. He said to write it down, the life that I had wanted, and then realize you have to let it go. I tried, I scribbled out two sentences, just two, it was as far as I could go….giving up on my dreams is one thing but he realization that I have to give up on some of the dreams I had for my children is something, I still am not ready to do.

This afternoon Faith pulled an eyelash off my face, she held it out on her little finger and said, Mom make a wish. I declined and told her she could have my wish. She closed her eyes and scrunched up her nose…I wish I was Gabby Douglas. She then ran to her room and put on her swimsuit.  A few minutes later she is doing somersaults off the couch in the livingroom and throwing her hands up in the air as if she had just won the gold metal in London. Faith will never be an olympic gymnast. But with any luck, she will be a mom who gives her kids quarters and tells them to wish for the world.

 

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6 thoughts on “wish i may

  1. Misty Manis

    Dear Mary Ann:

    I can’t say that I know how you feel, because I don’t… And unless you have experienced it, you could possibly never understand… I do know though that as long as you have Faith, you have hope and when you have hope and faith, nothing is impossible… I wish I could step in and take some of the burden off your shoulders. I wish I could be your shoulder to cry on. I wish I was rich so I could take the financial burden away.. I wish I could invent a cure to heal your little angel…. I can’t have those wishes, but I can pray for you and your precious daughter and I can pray that you will learn to wish again (and dream of happy endings again)….. because God promises that anything is possible through him and miracles do happen (all the time)… You are loved, your children are loved and I hope that you never forget that… I am praying for all of you tonight and I am going to believe that God will take care of your whole situation and show you how to dream again and find joy again… May God bless you sweet mother and bring joy back into your life…. signed, the best friend that you have never met (yet) Misty Manis (aka mistytngal on twitter)

  2. I came over to your blog from another blog who linked up your just be nice post. I love that phrase I say it often when working with my after school program.
    Why aren’t people nice anymore? It bothers me, It bothers me A LOT!
    Thank you so much for the reminder everyone could use it once in a while. I wish there was something I could do for you, your family, Faith and I have only read 2 of your posts.
    I can kind of understand your not wishing anymore. For me I feel the same way about praying I know,I know I should be struck down or something. But it’s not that I don’t believe anymore in praying but if my prayers don’t come true I don’t want to be that angry with God. I know it sounds silly and this is your blog to work through your stuff not for me to take over.
    My thoughts are with you.

  3. Lady Viper

    Hi! Mary Ann! A friend of mine asked me to read your blog and I am so glad I did! WoW Hugs to you and your family. I will add you all to my prayers as I have trouble sleeping- so I pray till I fall asleep most nights. What a heart grabbing blog! I will continue to read it!

  4. I found your blog when searching for a doctor in Adrian. (I think it was linked in a comment.) I read a few of your posts, and … wow. I haven’t read enough to understand what is really wrong, but I have a younger sister who was diagnosed with diabetes when she was four (is now 24), so I understand how hard things can be, how little things can turn into huge complications. I hope you and your family find some peace. Stay strong, and good luck.

    Best wishes,

    SLH

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