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.