This year, I'm making a change. I'm giving up on some of my optimism.
I have realized that being positive over the past few years has actually set me up for failure. When it comes to Jaycee's medical needs, my hope that she might get better and improve has set me up for one disappointment after another.
Let's go back to when Jaycee was a year old and the word "asthma" was spoken over her. No big deal was my initial response. It will get better. Every person who told me of a friend or family member who grew out of asthma just fueled my positive thinking that Jaycee would no doubt be just fine one day.
Every time her fingers turn blue or her breathing goes into the red zone on her asthma chart, I get upset that Jaycee's life is still threatened by asthma. Today, Jaycee is almost 10 years old. She's still taking daily inhalers, wheezes when she gets a simple cold, and is still impacted by asthma.
Then there's Jaycee's c-pap use. At age 3 she was diagnosed with obstructive sleep apnea that was not corrected after having her tonsils and adenoids removed. The first few years Jaycee was on the c-pap were extremely frustrating as we tried to get Jaycee adjusted to wearing it. My hope and prayer was always that Jaycee would improve and no longer need to use the machine. It limits her ability to sleep over at family members homes and prevents her from sleeping where she wants in the house (or in the car).
Over the years, Jaycee has switched to a bi-pap and her latest sleep study indicated the need for even higher settings. After years of worsening sleep studies, I have relented to the fact that this machine is forever a part of our lives.
Fifteen months ago, I started giving Jaycee a weekly bleach bath (or a swim in a chlorine pool) as part of her treatment to control a staph infection on her body. What I figured would just be a temporary addition to our routine is still there.
One last example, Jaycee started vest airway clearance in the fall of 2013 to treat her lung cyst, recurrent pneumonia, and poor cough reflex. She has used it twice daily (or more) since then. I was given a hopeful speech that perhaps if Jaycee stayed pneumonia free for a desired amount of time, then her vest treatments could be reduced or decreased significantly. I optimistically looked forward to the day when this happened, telling myself that this was just a temporary device Jaycee would need. Yet, the vest airway clearance treatments have not changed a bit since they began.
I want Jaycee to be healthy. I want Jaycee to have as few of medications and daily interventions as possible. I want there to be a day when I don't have to worry about her health. I want her life not to be threatened by a silly cold virus. I want her immune system to work properly. And if I could never, ever see her in a hospital bed again, then wow!! That would be something!!
But, I think I have been setting myself up for disappointment after disappointment by wishing for a cure or a fix for things that may never be. Perhaps, I have always looked at every intervention as "temporary" because it was the only way I could cope. Like, if I thought the c-pap was forever in our home when it came in at age 3, I would have just been too overwhelmed at the time. Sometimes, I feel like I walk a dangerous line between having faith that things will get better and being in complete denial.
When I put a time table in my mind as a possible end point for this or that which come and go with no change, I tend to get upset and wonder when life will be easier and less restrictive for Jaycee. I hate putting her through so much medicine and doctors. I just want her to be healthier.
I suppose I have decided to approach things differently this year. I am not expecting anything to change this year. I have decided that the 11 medications, twice daily vest treatments, daily nebulizer treatments, bi-pap machine, and weekly bleach bath will just be factored in to this entire year. I will still hope and pray for Jaycee to get better, but I refuse to be depressed or disappointed when these things are still apart of our life next year.
Perhaps instead of saying this is my year to be pessimistic, I'll just say I'm going to be realistic about Jaycee while I pray for her best. Whether things change or not, I will appreciate the life God has given us this year.