the moments I’m grateful for…

Faith and my niece JuliaI used to love being alone. Not all the time, because I am a people person, but I loved going running and I think half the reason I would run so far was because I loved my alone time so much. Now, I dread my alone time. There really isn’t all that much of it, but when I have it, it pretty much sucks. Today, I realized that it’s when I am alone that I really can think about what’s going on in my life. And for the first time, in my life, I have no direction. I have no idea where I am headed. I have no plan, and that is a very scary thing. I feel like I am in control of nothing, and I have no clue when that will change.

Faith has been out of the hospital for two weeks now, but her stoma from her colostomy is infected and she’s had fevers three times this week. She woke up this morning in pain and said, Mom, When am I going to be better? I can’t answer her. I have no idea. I am fairly certain her doctors have no idea.

Our dining room is now a medical procedure room, where I stick a red rubber tube into her colon and wash it out, hoping that the infection that makes her feel so bad will get better. We have to change her ostomy bag in there and treat the yeast infection and nasty infection around her stoma. Her last stoma prolapsed, meaning part of her colon that was supposed to stay in her body was now coming out of her body…so they cut that part of her colon out and made a new one…now, the new one, is also starting to prolapse. The ramifications of that, I can’t even consider at this time. We take care of her Mickey button, which is where she receives her tube feeds…She has medicines and other things we infuse thru her tube every two hours or so.

Her doctors seem to agree to disagree on her treatment. One says remove her entire colon, one says, keep as much as you can, one said her small bowel is messed up too. The bottom line they have no clue. They have no plan. That is what happens when you get a disease that is diagnosed once a year in the USA. Everyone says…go here, go there…doesnt matter. No one is treating her illness successfully right now, Mott is where she is comfortable.

I’ve done a great job, she has no clue how scared I am. Her brother may, he isn’t sleeping well, and asks me all the time when we are headed back to the hospital. I’ve convinced her that Kindergarten is not something she wants to do, that a ballet school is way more exciting. Even thou for some reason this is one of the hardest things for me, its such a monumental thing…starting kintergarten. I already play over and over in my head, I didn’t go to kindergarten I was too sick…I just am sad that she’s missing out. It’s just not fair. She would love it. And everyone wants an explaination…why don’t you try it…I assure you, no one has thought more about this than me, and I can’t talk to you about why. Because when I think about it I can’t breathe, so talking about it is out of the question.

So, My alone thoughts are way worse than any of this stuff. Our life is hard right now, and I seem to just feel happy for moments at a time. But those moments, I am so grateful for.

A friend, seriously offering to marry me so I have health insurance, an I-pad to make our hospital stays so much easier. A tweet from a friend that cares so much about my daughter, he thinks about it in the middle of a very busy life. A near stranger who tracked down my daughters last name to send us food from whole foods so we didn’t have to eat hospital food. Friends who continue to try to organize a fundraiser, for us, even thou my pride stands firmly in their way. A niece who can make my Faith forget she’s sick. Friends, who have come to clean my house that is totally overrun…An Aunt who’s there in place of my dad. My mom who takes over as mommy for Will the minute we get admitted again. My son who loves me no less even though as he just said this summer has been the worst, And someone to hold my hand, just to hold it.

I’m grateful for these moments, the moments that I forget I am sad. More than anything, I am a grateful for her, that god choose me to be her mom, because, really she’s amazing. And when I think of how amazing she is…those are the moments Im happiest.

8 thoughts on “the moments I’m grateful for…

  1. Your obviously a very strong women. And I know somewhat what your daughter is going through. I was born with a liver disease that me and my brother both had. And our my spleen was the size of an adults by the time I was 1 if that. My doctors just recently two – three years ago found out what our liver problem was and he had his liver transplant like two years ago and I just recently got mine the day after Thanksgiving. I was so happy and knew that my life would be turning around. It takes a whole year for the body to get used to the liver fully again.

    Just keep faith and I know you probably already have faith. But never give up. My mom had to help us out ever since we were born till I turned 21. You have a really strng heart and I wish nothing but the best for you and your daughter. What hospital are you going too??

  2. One again Mary Ann, I read, I weap – You are, my friend, the tower of strengh that one day you will come to realize, and honor yourself for – Deep Breath, Many a Prayer & Humbled. God Bless your family.

  3. Mary Ann, I have come to love you in Christ’s name. I read and all I can do is pray. I have no words of wisdom and maybe that is because my brain is failing me which happens more often now days. Your story makes me sad and I wish there was something I could do or say to take the pain away from you if only for a little while. I know what it’s like to be the sick one but I think it to be more stressful to be a caretaker; I am still with it enough to watch my wife suffer as I deteriorate. Always looking for anything that will slow down the progression of the Alzheimer’s. I know Faith is young but I bet she can see it in you too. We feel grateful for the love. It makes being sick so much easier.

    God has given you a huge task, to look after your sick child. It’s okay not to have direction in your life but make sure you take time to fill up so you can continue to give that love and support. Take care of you. It’s the most important thing you can do honey.

    With all my love for you, Will and Faith,


  4. Hi Maryann, I’m sorry you and your children are going through so much! It’s so hard to be single and then to have to deal with a child’s difficult disease on top of it–well that’s a lot to bear!

    If you’re interested in exploring different/additional options, I see an alternative medicine dr in Flint. He’s a D.O. and has helped a lot of people. The woman who referred me had a daughter who was missing over half of her school time for years because of severe bladder problems (that surgeons and conventional drs were not able to solve). She would sometimes go 24+ hrs unable to urinate at all, constant pain, etc. Her life was 100% turned around after seeing my dr and just recently she graduated from high school as valedictorian of her class! I like my dr because he looks at each individual separately and looks at the whole picture. He’s helped me a lot.

    Anyway, if it’s something you’re interested in, send me a message on FB or get ahold of me through Denise.

    In the meantime, I will pray for you and your children.

  5. Mary Ann,
    I am Sue Youngs daughter-in-law and I hope you don’t mind that she sent me this link. We ask about Faith often. I just want to let you know that even though we don’t officially know your family, we are consistently keeping all of you in our thoughts and prayers. I can’t say I know what your going through… even as a mother, I can’t begin to imagine the pain you all are feeling whether it be physical or emotional. It is truly amazes me how you are staying strong for both your children and absolutely understandable to see how you can fall apart at times, your human and thats your baby. I feel that we learn so much from our children that we did not know about ourselves. So continue to be the wonderful, caring mother you are. We are thinking of your family!
    ~Tara Young

  6. MaryAnn, there is a page on facebook dedicated to kids with analrectal malformation. Everyone on that page has a child with a colostomy or ostomy. It is a wonderful support group. It’s call the Imperforate Anus Support Group. you can message me if you want to be added.
    Lisa Chrysler Kocab

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