changed…for the better

Faith is sick. She’s got a cold. But with Faith a cold is never just a cold.  A virus of almost any kind sends us to the hospital, but this time we seem to be doing a better job managing her health at home. Now I am constantly second guessing my decision to take her in, but we’ve decided for now we will continue to do everything we can to keep her little body stable at home.  It’s lots of fluids running through her feeding tube and constantly monitoring her output from her colostomy bag. It’s a numbers game, in verses out. Right now the numbers look okay.

This evening she looks at me while I am cleaning her feeding tube site and says, “Mom, I am ready.” My response is quick, because last night she thought we needed to head in to the hospital, and we did just fine. I told her we were going to stick it out. That if we could get past our first virus without an admission it would be such a huge accomplishment for both of us! She sat up grabbed my hand and smiled. “Mom, I’m not talking about going to Mott. I’m talking about when Jesus comes for me, I’m ready.”  My response was quick, and not so loving…YOU are not going anywhere.

As I tried to stand up to leave the room I felt like someone had tackled me from behind and knocked the breath out of me. She called after me as I left the room, “it’s just important that you know mom, I am ready.”  I went into the bathroom and started thinking as fast as I could about something besides Faiths proclamation.  Cabrera just won MVP…so exciting, well it was, but suddenly the MVP that I’ve been anticipating for a couple of months now, is not able to distract me from this thought. WHY is Faith even thinking about Jesus coming for her…why.

She’s asked a few times, when she will know when it is her time to be with Jesus. Then she had this horrible infection in her blood, she was terribly sick. After that infection she let me know, that it wasn’t her time yet, and when it was Jesus would be back for her.  I hated every single word of that conversation. I would so rather be completely naive to that fact that my daughter at six years old is facing mortality straight in the face. Maybe that makes me weak, but she’s my baby, and these thoughts are always in the back of my mind.  She faces it, then minutes later is doing gymnastics on our living room floor.

The reality is we are now surrounded by a community of sick kids. She has a friend that is very close to dying. She asks almost every morning if there is bad news…I know exactly what she’s referring to. So it shouldn’t come as surprise that she’s thinking about death. But it doesn’t get any easier to handle. Sometimes I feel like the only people who understand me are the other moms that are dealing with a sick kid. They understand. They understand that sometimes it takes everything you’ve got just to care for your child. They understand that stress isn’t about getting all your Christmas shopping done, it’s wondering how you’ll handle Christmas at all. They understand that you change. That as much as you want to be the sports loving, wine drinking, bonfire throwing, fun mom, you’re not anymore. Suddenly MVP celebrations are ended with thoughts of your daughter thinking about death and assuring her mom that she’s okay with it.

We’ve changed. But if you would ever believe this I believe we’ve changed for the better. Yes, I miss my easy life. I miss sleeping for more than 3 hours at a time. I miss working, and I miss not worrying about every check I write. I miss bonfires, and wine.  But what I really miss is having crazy dreams for my baby girl. You know, when you have a child you want them do it all. Now, I dream of  her being able to go to school for a whole day or staying out of  the hospital for six months. I miss the crazy dreams, the you can do anything you want Faith, dreams.

So how, have we been changed for the better. Dealing with all of this, how could I be thankful? I understand that life is a gift. I understand that we don’t decide when that gift will be taken from us. We live so differently. I am thankful for it all. And so are they. They are not your typical six & nine-year old children. They understand that and they love each other, so very much. And they love me, more than I ever imagined I would be loved. We’ve survived so much together, and we are tough. Yeah, so maybe Faith is the toughest of us all, and maybe someday, I’ll have the faith she does. For now, I’m just holding her tight, and reminding her, the only place she needs to be ready to go to is school.  Hopefully, for a full day.

13 thoughts on “changed…for the better

  1. I really don’t know what to say except I love u guys!!! And that tears seem to be an accessory to your Posts for me. You are my heroes … Xoxo

  2. What an amazing little girl you have… Thank you for sharing. Your family is beautiful. I hope she is feeling better soon. Sending prayers and hugs your way.

  3. OMG! Mary Ann, I don’t know how you do it. I started crying as soon as I read what faith had said (that she’s ready). I can’t even begin to fathom how that made you feel. I’m SO sorry that you and your children have to deal with suck things. I have never met you or your kids, but I feel as I know you all well & I love you all as if we’ve been friends for a long time. I think of you all daily and I pray for faith every chance I get. I pray that one day they will find a cure for her so she can have the “normal” life she deserves! She’s the strongest person I have ever heard of, her situation would make anyone weak and wanting to just give up, but neither of you has & that is admirable. She’s lucky to have you, Will & Dennis in her life and you are all very lucky to have her in yours. She ha definitely taught many people, most of whom she won’t meet, a true life lesson. I’ll continue to pray for her and for you all. Keep the faith and hope, I do believe they will find a cure or at least something to make her life a lot more comfortable than it is now. Hugs to you all.

  4. I am praying for you and your family Maryann….. I wish I had words of comfort or words of wisdom…but all I can do is pray….and pray !!!

  5. I can’t comprehend what you and you children are going through. You must be an amazingly strong woman to be able to even write this post, let alone live every second of it.

    All I can. And will do is pray that Faith can be healed and that you and your son have the continued strength to fight this battle.


  6. Mary Ann You are a amazing person. You are stronger than I’ve ever imagined of being. I don’t understand what or how your going thru, but I can say that you all are in my Prayer’s every night…You have such a beautiful family that inspires me….<3

  7. My older daughter told me about six years ago that what she went thru was what Jesus had wanted. I said that I dont think Jesus would ever want this in your life. All I know now is that My family is now born-again christian living for Jesus Christ as best as we can having flesh in us. Where my daughter was in that point in her life brought me to my knees. The only place I could turn was to God, then I found Jesus Christ. There is a difference. I am so thankful that Faith know this, My kids and I have only known this newness with Jesus Christ 6 years and one of my children still does not want the truth. Jesus Christ takes what satan meant for evil and makes it work for his good. I stand on this in the bad days and thank Jesus Christ that my life is better now with him then without him. Love in Christ Ame

  8. Hello Maryann. I am sorry I have been away so long. I very glad to hear that Faith is hanging in there and you are too. I pray for you and your family every day. Words can not express the love and admaration that I have for you as a mother and a woman. I only wish I had have the strength you do. Please give little Faith a hug from me and my daughter Aubree. Tell her people from little ole Oklahoma are thinking of her everyday, always! Love, Deborah

  9. Maryann, I would have like to of sent you a personal message. I’m not big on comments. Is there any way you can contact me through email? I would love to talk with you about something!! I am praying for Faith, your son and you!!

  10. Wow! You are so gifted in words and strength. Your story has in unexplainable beauty – like a rainbow after a storm! Your daughter has found and grasped and ministered the true meaning of life before most can even write their name in cursive. She’s gone on a journey that will take most a near century to complete and she has endured it with the hope and glory of our almighty creator! My cheeks are drenched with tears upon reading just a few of your posts. No words will comfort your heart and there is no justification to your aching but there is hope to be had; and your precious Faith, wise beyond her years and blessed in a spiritual sense, gets to be your teacher. I’m a 2nd grade teacher and I can say, no education can even begin to reach the level of truth and comprehension she has attained. I am so deeply moved by your words and the testimony of faith. Thank you for sharing this journey. May The Lord be with you always and may you know him in so many ways!

  11. Origami Owl has a tag/charm for a necklace that says, “Changed” on the front and “for the better” on the back. I bought it recently because I feel the same as you living with my very special daughter. You put it into words so beautifully. 🙂

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