It’s a marathon

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 I’m in a bad place.  I feel like I can’t talk. I feel like I can’t really even think.  I also can’t sleep. I am in a position of wanting to change what I am slowly beginning to realize is my reality, or maybe more importantly what is Faith’s reality.

The first couple of years after her diagnosis were so hard.  We literally lived in the hospital.  I felt like we didn’t have a handle on things, and I felt like life was a big blur.  Then we had a couple of years, that seemed to go fairly well.  Fairly.

Don’t get me wrong, it was still a struggle, but we had 9 admissions in two years as compared to 24 admissions  in two years. Clearly, things were getting better.  She still needed medical care or intervention every 3-4 hours but things weren’t so bad. She was going to school more, and even had become a gymnast.  I was beginning to think it all wasn’t so overwhelming.

Now, that doesn’t mean I wasn’t overwhelmed. But I was beginning to think I could figure it all out. A friend of mine who owns a restaurant even called and offered me a job for a few hours a week…he was trying to help, but in the end it made me realize what we are really dealing with.  Friday and Saturday nights from 6-9pm.  The first weekend went great.  Then the second weekend she was sick, but she was so excited that I was working, she didn’t tell me.

The next two weekends she was admitted and then she came home on IV antibiotics.  And I think then is when I realized, my job was taking care of her, and I couldn’t handle anything outside of that.  This was both a scary realization and a sad one. There’s a little girl at Mott, that has a disease similar to Faith.  We can be there for weeks at a time and I don’t see her parents…and I wonder, can they just not handle it? Because I get that feeling, but I also can tell you, nothing could keep me away.

Something is different the last few months with Faith.  She’s been sick and she has needed IV fluids instead of her usual g-tube replacement fluids.

We are in the position of making a decision to give her permanent line access through inserting a port.  She had a port once before and things did not go well so as you can imagine making this decision leaves me feeling like there is no good way out.

Really, it’s not us making the decision. It’s her body and that’s so hard.  She has so much to deal with already. I feel like this is just not fair.  It is so hard to see her in pain or feeling poorly and not have any options to make her feel better. But I am scared that the port is one more thing she will have to deal with. One more place that could get infected, one more thing to worry about.

This journey that we are on, it’s not a sprint, it’s a marathon. And her legs are tired and so is her spirit.  She needs a break, she needs to remember how good it feels to do a cartwheel at the gym or hang out at school with her friends.

When she was young and practically living in the hospital she played “hospital” all the time with her dolls.  As her health improved I was so excited to play school with her and her dolls.  Last night she set up an ER in her playroom, complete with six babies, all about to get ports or PICC lines.  I know this type of play is good for her and I know it helps her deal with her emotions about her surgeries and health issues, but as her mom it breaks my heart.

It’s summer. I want her building tents and swimming pools for her dolls. In fact, I want her outside in a tent and at a pool.  This reality of hers its too much sometimes. So lately I’m quiet…I have many things I am trying to figure out. And I am trying to process all of what is going on…and I can’t help but think to myself over and over again, she deserves so much more…..

And she is at an age where she is starting to realize the stress of a serious childhood illness and what it does in families.  And if you are wondering if she has the same thoughts about thinking she deserves more, I can tell you, she doesn’t. What she does worry about is her brother, who gladly skips out of pool parties because it wouldn’t be fair to Faith. And she thinks of me, and the additional pressure the IV fluids and PICC line puts on me…often she wakes up in a total haze in the middle of the night when her pump goes off and apologizes over and over again that I don’t get any sleep.  And when she is awake, she looks at me sometimes when we are just sitting and says….I’m sorry this is so hard mom, I am so glad god gave me you.

The reality is I am the lucky one….I am so glad he gave me her….

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6 thoughts on “It’s a marathon

  1. Annette W

    It’s easy to see what an amazing mother you are and your two precious children sound like replicas of what a giving and living person you are. I am praying for your beautiful Faith as well as you and your family.

  2. Mary Lou

    I can not imagine the world you and Faith face everyday. Please find a support nurse who can let you rant when you need to and shed tears if they can flow. God is present here…and while he holds you tight, carries you when you can’t walk, and helps you find joy in the little things, he is also giving a gentle hand on those who care for Faith. God speed strength to you and healing to Faith. Hugs to you both. My prayers will continue. And thank you so much for sharing your journey. Mary Lou

  3. As a 40 year old woman and mother who has been sick with Crohns For the last 20 years I would not have made it this far if it wasn’t for my mommy … Faith is just blessed to have a mom who understands this is a journey the two of you are on together … I have two children who see my struggles Dailey and it’s very hard not being able to do the things I would like … I have a port and for me it’s a blessing … And I have to tell you when I received my Ostomy all I could picture is faith with hers and mine will be with me for the rest of my life and if it wasn’t for that picture of her it’s burned in my mind … She is a beautiful little girl .. Anyways I just wanted to say I love your updates and thank you for sharing ..

  4. suzanne (Xuereb) davidson

    Mary Ann,
    We have not known each other well but we went to dexter together. As a fellow mom, my heart aches for you. My son was hospitalized for the first time last year and although his experience pales in comparison to Faith’s, we were on the hem/onc floor and my first thought was, how do parents do this? (Live with their children having chronic or severely acute/potentially lethal illnesses?) May your faith overcome your fear. No pun intended! My prayers are with you and your family.

  5. Karen

    My prayers go out to you. I am praying for Faith and for God to send His angel helper to help you and give you some rest. Have you thought about looking into Respite Care for Faith? It gives you a much needed rest…if even for a few hours a week to go be with friends to refuel your tank. Inquire at the hospital social services to direct you to options for respite care. Blessings to you my dear!

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