Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
Emily Dickinson
We are pressing onward. In the midst of chronic illness and other related trials, I am gifted with hope for the future and hope that we will see the end of this particular run of challenges soon. I keep thinking to myself, that the only way through is forward. Surely on the other side of this week, this month, this year, there will be a lessening of pressing stresses and life can return to a more "normal" pace.
Whit has started weekly injections, weekly blood work, more daily medications, and is still getting his infusions and supplements. He feels good today. It is hard to predict what each day will be like. We are living with the constant up and down of good days followed by bad days followed by awful days followed by a great day. This is the kind of schedule that really teaches you to enjoy the small things in life - quiet moments of cuddling on the couch, reading books out loud together, laughter, beauty, love...
People are so kind. Lots of people ask about Whit. The neighborhood where we live has nice places to walk. The shop owners ask about him when they see me out and about. My wonderful, encouraging co-workers are always checking in with me to see how the week is going. My family is incredibly helpful and supportive. I have friends that are always checking up on me. I am grateful.
I have hesitated to write much about Whit's health issues. There is his privacy to consider. I also feel unsure about how much to share of my personal feelings about his illness for many reasons. But, recently, I began to search for blogs and information about children with severe ulcerative colitis and related auto immune disease issues. I did not find much. What I did find was incredibly encouraging to me. It was so affirming to read about other's experiences with their children and how they have coped. This made me feel that maybe it would help someone else to put myself out there. Whit's combination of diseases does not get that much press. He has celiac disease, severe food allergies, ulcerative colitis, and asthma. Right now, it is the ulcerative colitis that is causing him so many problems. His colon is ulcerated and will bleed out if he is not treated. The struggle since his disease went active again in September, has been to control his bleeding, pain, and other symptoms. He has to be on steroids that cause swelling, weight gain, emotional swings, and sleeplessness. His medications can affect his liver and he has to have weekly blood work to check his liver numbers. They also destroy his immune system.
Maybe I will take this post down at some point, but for now, I feel it is okay to post about our family and our struggle with ulcerative colitis. Whit is running out of time to be on the steroids. You cannot take them long term. He is stepping down now. Over the next few weeks, he will be tapered off of them completely and the infusions and injections will need to sustain his progress. If not, we will be facing some big decisions about how to continue his treatment. We are hoping for the best. As I listened to the birds singing outside my window, as spring creeps in, I was reminded that hope is the thing with feathers. I do hope this spring brings a new season of health to my Whit.
