I’ve been holding my breath.

I’ve been holding my breath.

Its been a week. A week since we were last admitted. We’ve spent more time at Mott in 2012 than we have at home. This last admission, I started holding my breath and I just realized, at some point I am going to have to exhale.

I used to work in an NICU…a neonatal intensive care unit. Babies, of all sizes, and gestation, I was a human resources consultant. I didn’t know much about the medical side of this, but I knew when babies were really sick, I knew when to be scared. Sepsis, an infection of the blood and one of the words that used to make my eyes burn, I knew when the babies had sepsis it was a really bad thing, I also knew that when they got something called NEC it was also a big thing…this is when the intestines would start to die….two things you never wanted to hear about anyones baby. There was a family once whose baby had both. I remember they made a decision to take the baby home…I was so confused about this. That baby was so sick, why would they ever leave the hospital with her? Then someone explained to me they were taking that baby home to die.

I’ve been scared so many times in the last couple years. Every time they take Faith back to the OR, my mind travels to a horrifying place. I’ve lost count of how many times she’s been in the OR in the last year, over 15…honestly I think its even more, I stopped counting at 12…You worry when they take her back, but you still have an overall sense that she will return, safe and ready to face the next part of our journey.

As you grow older you think about losing your grandparents, and parents, I think that is a natural part of life, but it is completely unnatural to think of losing your child. So you just don’t do it. Until you are forced to go there. I have found that if I hold my breath, I can stop thinking about it…so this last hospital stay the scariest of all…thats what I did. I held my breath and I didn’t let on to anyone, not one person exactly how terrified I really was. Faith had an infection in her blood. And the kind of infection she had been a really bad infection, one that is difficult to get rid of….she had sepsis…sepsis.

Faith has a reoccurring infection in her colon. Its called entrocoloits. She gets really sick when it gets bad and ends up in the hospital. So Faith is on a gut regimen of different antibiotics. Those antibiotics along with Faith’s bad gut, made a perfect breeding ground for a type of systematic yeast infection, that with a little time would eventually travel to her bloodstream, causing sepsis.

On a Saturday morning, just four days after her last discharge she woke up with a fever. She felt horrible. I assumed she had a virus, but with Faith’s condition you can’t take any chances. We went to the ER, they did blood cultures and admitted her. There was not a single thought in my head that those cultures would come back positive…but they did.

She was so sick, and she was scared. She kept saying, “mommy, I’m really scared.” Usually when your kid tells you they’re scared you ask…of what? But I didn’t. I was too afraid to hear what she was scared of. It went on for almost two weeks, she didn’t get out of bed for six straight days…I rememeber thinking maybe I should make a deal with god, but I had tried that before…and it didn’t work. God wasn’t listening to our prayers.

One morning Faith woke up and she kept getting sick, her fever was over 103, she was miserable. I was holding her like she was an infant again and she looked up into my eyes and said, “mommy, doesn’t god know, I don’t want this. I don’t want this life mommy.” Tears were streaming down my face and dripping on to her, she said, “don’t cry mom, it’s not my turn to go with Jesus yet.”

So that, is something you never want to hear come out of your 6 year olds mouth. I hate that my daughter has been introduced to the pain of childhood illnesses and children dying much before they should. I hate that she is thinking about when she dies, because it’s not something a 6-year-old should be thinking about. I hate that she often says to me I don’t want this life mommy.

Almost two weeks from when we were admitted for her infection Faith was finally well enough for Will to come see her. They were so cute together they really had missed one another. Then this alarm was sounding and we had to evacuate to the hallways because there was a Tornado warning. I was texting with my mom, who was at my home in Dexter and she said, I can’t reach Regina. Regina is my sister-in-law, and her and my brother have four children. I figured that my mom was being her usual worried self until I started to hear reports that the tornado’s had touched down in Dexter on the road my brother lived on. I grew up in Dexter & lived almost all of my 38 years there, if the town had been torn apart it was likely, I knew the people effected.

Finally I heard word that my brother and his family were safe, but their house was damaged and the barn that my brother ran his business out of was completely destroyed. As I watched the footage of the storm on every news channel from the hospital bed that night, I remember thinking it would be a miracle if everyone was safe. Many people I care about lost their houses that night, but they were all safe. That night as I went to bed I thanked god, it was the first time in a long time I remember thanking him, for protecting my bothers family and the lives of the people in my little town, Dexter got its miracle.

The next morning Faith had her first negative blood culture…She was still feeling sick , so it didn’t make much sense to me but, I believed the culture. The next few days we fought with Faith to eat, and drink because we lost her IV access and she wasn’t able to get her nutrition through her IV. She did ok, and finally we were able to go home. As we drove into Dexter the subdivision with the most damage from the tornado had a rainbow over it…I saw it as a sign of hope.

I’ve been thinking a lot about that Tornado and the destruction it left, but mostly the miracle of the families that were left totally unharmed by the storm. When you deal with tragic situations it often makes you want to live life differently.

I want to try really hard to keep living life, Faith isn’t going to be better tomorrow, or even next year. But I believe she deserves a miracle as much as anyone, so I’m holding on to hope that her storm will have a rainbow at the end of it. And eventually, I’ll be able to exhale.


10 thoughts on “I’ve been holding my breath.

  1. This is Mackadocious23 from twitter.
    Your story has brought tears to my eyes. Im going to keep you and Faith in my prayers. I have 3 sons and could not imagine going through what you and Faith are. You are an amazing women.

  2. You have weathered thru another storm, of epic proportion, and a tornado to boot! Hang in there! We are all praying for Faith, as well as for you and Will! We will keep praying! Long past the time when Faith is well enough to be at home and be back at school, enjoying her precious life!

  3. Maryann, I love you and I pray for Faith. I can’t imagine what you go through even though I read about it.God if you exist why do you make a 6 yr old suffer?… causes me to have serious doubt…You can’t control everything because a loving merciful god wouldn’t allow this. I grew up believing notto question god but this makes it too hard not to, much love to you, Faith and Will!

  4. Please tell Faith that Alison from the IV team at Mott misses her and thinks about her all the time. She was my favorite patient there and always made me smile. I hope she knows how much of an impact she made on me with her courage and sweetness. I’m pulling for her. Always.

  5. There are many more people than you probably even know praying for you and your little girl… We, as moms, all feel your pain and yet cannot fully understand what you are going through. But know that we are praying for you all. We are praying for a miracle for Faith. I know that God has a purpose for her, and I pray that she will shine through it…

  6. Mary Ann, One day I want you to know MY story…until then…I want to say this: MIRACLES HAPPEN! You,your story,your Blogs,your TWEETS,your children,and your courage have ALL touched so many people you may never meet in person. On days when there seems to be nothing to smile about, I’ll read something you have written…then chuckle,smile,or make a smirky silly love grin…like an “A ha”. Sometimes it pushes me through the next hour. However,most of the time it pushes me to think about someone other than myself and how bad I think I have it….
    I know I am not the only person you’ve made feel this way.
    SO….tonight and tomorrow…ALL of that energy will be given BACK TO YOU and your family! I pray that it’s enough to push you all through tomorrow and allows you ALL to exhale.

    Miracles DO happen.
    It’s time for Faith to receive hers.

  7. pray for your family every night. Your posts break my heart.You are a fantastic mom. A friend if mines daughter was just diagnosed with lymphoma. Not good. Maybe I will see you at Motts or better get-out not since Faith will hopefully be home. Take care Mary Ann,please try to get some sleep. Talk to you soon.


    @, Maybe I will see you at Mitts but hopefully not- that would meanFaith would be home

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