Last night was a big reality check for me, thanks to an incredibly caring and thoughful ER Dr. who took the time to talk to me amid the chaos of the ER. Ashlyn awoke yesterday with a high fever, and by 4PM her fever was over 103' and she was not able to keep her meds down. So I took her to the clinic, thinking it would be a simple in and out in a hour or so type thing, but no- it ended up with them sending her to the ER and the process took 7 hours.
In the two weeks since Ashlyn's diagnosis I have been in this bubble so to speak. I figured since we have a diagnosis, she'd take the meds and we'd move forward, some days being better than others. Life would be full of rainbows and sunshine from here on out. There might be a few blips, but everyone has those days. Boy was I wrong. I have done some reading, but nothing I have read has truly prepared me for having a child with Crohn's. How waking up with a high fever isn't something I can let her sleep off. It means going to the ER for bloodwork, IV, x-rays, etc. How quite often bacteria invade the raw areas of the intestine and wreak havoc in the digestive tract. How even having a runny nose can cause irritation that can lead to problems. I have been trying to focus on the positive aspects of this disease, but I am finding more and more that the positive stories are few and far between. Most experiences with this disease are far from positive. People are quick to say how sorry they are for her, and happy to speak the truth about the negative experiences they have witnessed by having a loved one with this disease, which I am OK with. At first I would just tuck them into a file in my brain marked, "surely this will not be the case with Ashlyn", and thank them for their honestly. But as I sit here, that tucked away file has blown up and all these "horror" stories, I will call them, are invading the rainbow and sunshine places. Filling my head with all the bad that comes along with Crohn's.
I have shed some tears this morning. I have looked into the eyes of my sweet baby girl and felt her pain and suffering. I have prayed to God to take it from her. I have felt my heart drop as I cannot tell her that she is going to feel better soon, because that is what I have been telling her everyday. And she is not. I know this is going to take a toll on her, as it is all of us who love and care for her, and do not want to see her suffer. Today I will walk on the dark side of this disease. I will got to the pharmacy and get more pills for her to take. I will buy more Tylenol to fight the fever. I will look at my daughter and my heart will ache as I have to watch her endure whatever it is her body is fighting. I will pray with all my heart that she will get well. That this will be the worst this disease will have to offer. But I will know that at just two weeks into this, I need to face reality. This is now our life. We need to continue to live day to day, hour to hour. Prepare for the unexpected and roll with it. But more importantly, we need to continue to seek and embrace the positive, because there is a rainbow and sunshine out there.