myfaithsjourney

I 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.

I love Target. It has almost everything I need and since the divorce it’s where I get most of my clothes. Lately, since all of this with Faith I don’t have Target money anymore. Last week my girlfriend gave me a $50.00 gift card and I was so excited! Yesterday I decided I was going to leave the hospital and go get Faith something special from Target. Then Dr. Newman came to talk to me.

The disease Faith has is very rare. A couple of cases a year are seen in the US. She actually has two diseases, called allied diseases, which makes it even more rare. The problem when you have a disease that no one else has, the doctors have never successfully treated it. So they are guessing. Educated guessing, but guessing. Things have not gone as planned and things seem to be getting worse as we go.

Dr. Newman who Faith loves, came and told us there was something that they saw on her CT…they didnt know what it was, but they were concerned. they’ve also been concerned about obstruction, and function. They have no answers, they are as frustrated as we are. I asked Dr. Newman, what do I tell Faith? Will she be well enough to go to Kindergarten? Will she ever have her insides inside her again where they belong?? When do we get to go home? Dr. Newman who I believe really loves Faith, shook her head and shrugged. She has no answers for those questions.

So I left for Target, first I had to drop off Will, who cries so hard when he has to say goodbye. And I am sure would cry even harder if he was able to see me crying as I drove away. I drove to Target, excited to get myself a dress and Faith something fabulous to play with. I found a dress right away…maize, yellow is my color, easy choice. So I headed to the toy department.

I found a baby shopping cart, which Faith could push around the hospital, and with the chance of heading back to the OR this week, it would be important to get her to walk.

As I headed to the front of the store I passed the school supplies. Theyre all so inexpensive this time of year, so I looked for some things for Faith to use in the hospital. Then I saw her.

A young girl, Faiths age, with her mom. She was really cute, and small like Faith. I heard her mom telling her that when she was in kindergarten she didn’t eat lunch at school, and that she was lucky to get to go to school for a full day in kindergarten. The girl was picking out a lunch box, and I just stood there staring at them. Then I went and looked at every lunch box they had, unzipping them, seeing how big they were. Some lady asked me if I was okay, and asked if I needed a tissue. I was really crying and I didn’t even realize it.

Faith is supposed to be starting kindergarten. We are supposed to be school shopping. That mom and that kid in Target should be me and Faith. I want to pick her out a lunchbox, instead I’m trying to figure out how to tell her she has to be connected to her tube feeds 24/7.

As I walked towards the registers I passed the school clothes, there was really cute stuff, that Faith would love, but she has to wear dresses so her ostomy bag and feeding tubes don’t show. I want her to be able to wear what ever she wants, not what covers her medical mess on her belly.

So I was crying in the check out line…I didnt really even care. And I cry in front of no one! I drove to the hospital and took Faith into the procedure room to do her colon wash, as her 30lb body laid on that table, she noticed that I had been crying. She asked me what was wrong, and I was honest. I told her I felt bad that I saw a little girl school shopping and she was stuck in this hospital. Her response…at least were stuck in this hospital together.

So there is was, my lesson. And she is so right, three of Faiths friends lost their battles with their diseases this last week. And we are here together, as we should be. So I hate this, and I am not okay, I am scared out of my mind and I’m worried about how long I can do this, and how long Will can take all of this, and my house, that I built with my dad, how long I’ll be able to keep it, and that my kids both want their mom and I am only one person if I could divide myself, it would have happened, months ago.

When we went to bed Faith asked me to sleep with her, she kissed my eyes and said goodnight mommy, we can go to Target together soon.