a lesson about life and Target

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.

9 thoughts on “a lesson about life and Target

  1. Children are amazing. I think because they are so young and God is there with them all the time. they haven’t became an adult with all the things we know. and Faith has faith. She’s just a baby and wants to make sure mama is okay. and she knows everyone will be together always. Luv and prayers to all of you. You’re all close and there is love and that is what gets us through.

  2. I apologize if I overstep my boundaries. I have a really bad habit of wanting to help when I have not been asked to do so. Please forgive me.
    With that said, I would like to extend an open invitation to help you and your children any time.
    I have a similar story. But, I am not a mom. I’m a sister and daughter. So, I can NEVER know what you are truly feeling.
    Please know you & your children are on Prayer Lists across America!

  3. Mary Ann, I read this post (ending up in tears) while waiting at the Vet’s hospital with your Mom. We were there to check on palliative care for dad (grandpa). I so much want to do something to make Faith whole again and running about like any 5 y/o child and starting Kindergarten this fall that I can’t sit still, I just want to scream it’s so frustrating. I continue to pray to Blessed John Paul II for a miraculous healing – he loves little children so much and he loves Faith!! Little did you know when you gave her that beautiful name that your faith would be called upon so heavily, that your darling Faith would live up to her name so immensely. She’s such an angel. Remember the saying . . .”out of the mouth of babes” . . . well, what she says takes my breath away! There is such truth and simplicity and strength in her words. You are her strength and I believe she is yours! Always with you in thought and prayer. Aunt Pat

  4. I haven’t read all of your posts, I just happened to stumble upon your blog via my brother in law on facebook. My son PJ also had a colostomy and I understand the difficulty you and your daughter face. Have you ever consulted with the colorectal center at Children’s in Cincinnati? You probably have and I just haven’t gotten to that part yet. But Dr Levitt and Dr Pena are the go to guys in the country and maybe they can help get you some answers. My prayers are with you.

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