Mr Sharpy

There are certain experiences we have as a kid that through the lens of the parent is so radically different that watching your child live out those same experiences can feel confusing. Early November brought one of those experiences to our household. There was a lot of excitement buzzing in the air because Kaylee, after wishing and hoping since the age of 3, finally had a tooth that was on the cusp of falling out. Being a young first grader and possible a bit late to bloom in the dental arena, Kaylee felt as if she were the very last first grader to have all of her baby teeth. So when that tooth finally started to really wiggle her excitement could not be contained. And one evening as I was tidying up in the kitchen and my husband was working on Spanish with her, she squealed, "My tooth fell out!!"

She was busy jumping around the kitchen when I asked to see her baby tooth. She gave me a wide open mouth grin, bearing a little empty spot in her smile that exposed a little pink gum and she quickly deposited her baby tooth in my hand. Seeing that little strip of gum shot me back to the days when her smile was all gums. And then glancing at the tiny little tooth in my palm I was remembering the day that her very first tooth, lovingly named "Mr. Sharpy" by my husband, burst through. Suddenly, with the emergence of that tiny white fleck in her baby mouth all the fussy nights and cluster nursing made sense and somehow it all felt worth it because my baby had her very first tooth!! And now, that same tooth that brought so much excitement was sitting, useless in my hand. And yes, I was excited. How could I not be with a 6 year old brimming with pride over this tiny tooth and the adult tooth that would arrive a few days later? But I also felt an overwhelming sense of sadness? Or was it nostalgia. I can't be certain, but something was tugging at my heart strings that made me want to pull Kaylee closer and demand her to stop growing older.

These milestones that our children keep hitting bring them so many feeling of joy and excitement and I clearly remember the thrill that came from losing some of my own teeth. But as a mom, these milestones come with a harsh reminder that life keeps marching on and our children keep growing older and more independent of us. And yes, ultimately this is what we want for our children to grow up and apart from us, to be their own independent beings. Oh, but this mama heart wishes time would slow down just a bit so I can enjoy being her mama for as long as possible.

Expectations

It is human nature to try set goals and work towards achieving them. Nobody want to remain stagnant in any aspect of their lives: relationships, career, education. We have a drive that pulses through us so that we can continue to achieve our dreams and goals and pursue a life full of richness and fulfillment. This drive pulses through me just as strongly as it did when I went off to college, when I applied to jobs, when I went up for a promotion and when I wanted to become a mother. But I am struggling so much with taking that drive and that passion and making it a reality as CF presents itself more and more in my daily life.

CF has changed the way I view myself, specifically in the past 5 years. As my health situation has become more complicated I have trouble living the life as the person I think I am. I have always been driven and hard working and prided myself on doing well in school and in my careers. But lately my health seems to get in the way of all of my goals, not just the far reaching career and life purpose goals. Small goals like improving my swim times are constantly set back to zero by an exacerbation which leaves me too short of breath to swim more than a few laps. And even more basic goals like "I am going to catch up on laundry this weekend" get pushed aside when I wake up sick and unable to get out of bed.

In this season f my life I have been trying to focus on letting go of all expectations and just let my life ride out in the way it was meant to be (dictated by my health) and in many practical ways I have learned to adapt. I do everything early when I can because I know when the time comes I may be too sick to fulfill my duties. Like this fall when I bough Kaylee's backpack a month early, but didn't get shoes for her. I ended up sick the week before school started and she didn't get back to school shoes or other nonessential, but fun new items for the new school year. I write things on my calendar knowing there is a good chance that my health won't allow me to follow through. I say no more often than yes when given invitations trying to preserve my energy and minimize my germ exposure. But the practical ways of adapting are easy. It is the emotional adaptation that seems to be a struggle.

For so long Kaylee filled all my desire to feel successful because being a good mother is the most important job in the world and it was a 24/7 job that used up all of my energy and left me happy and full of pride each night. But as she has gotten older and needs me less and less I find more time in my day that I am not needed which makes me want to push myself to take on new responsibilities. With Kaylee in school full time I am finding myself with a lot of free time and that calling to do more, to be more is in full force.

A few weeks ago an opportunity fell in my lap that seemed to be the answer to my need to do more. A mom in Kaylee's class sought me out because she knew my background in education. Her daughter is dyslexic and she wanted my help through a specific program to tutor her daughter. She paid for the training and told me that the demand for these tutors in Kaylee's school alone was high and she had several families that may be interested in the same services. The hourly rate is high and the schedule flexible. I felt like this would be the perfect jumping off point in making money and starting my own business. Finally, I felt a little hope towards a fulfilling career. My husband was on board and we both felt so much excitement for this new endeavor.

The day before my first tutoring session I got sick. I coughed for 24 hours straight. I was able to tutor, but within hours of the student leaving my voice completely disappeared which happens every single time I am sick. The next day I wasn't able to get out of bed. The negative side of me felt so stupid for believing that maybe I could try to spread my wings and be human. I felt dumb for thinking I could push CF aside and try to do something for myself. The hopeful part of my brain that usually cheers me on even when the odds are slim was quiet for the first tie in a very long time. I haven't been well since September. Despite two rounds of IVs and a few rounds of orals, I seem to be in a pattern of sickness that my body can't pull out of. I have been here before and I know I will be here again, but right now it feels like a sinking hole I can't get out of. I also know when I sit here in the bottom of the pit of sickness my hope slowly starts to slip away. With CF the only way to survive is to hold on to hope because we really don't have anything else to grasp for.

For now, I am pausing my plans to build a business. It feels like a failure, but maybe it is just a pause button on a future success. Maybe the timing isn't right. Maybe it never will be, but if the time ever is right I know I have a plan. Maybe when I crawl out of this pattern of sickness I will reassess and try again. I will keep this one student and maybe over the next few years I can add a few more. Maybe I can't, but maybe by then I will have learned to let go of the expectations of what life should be like and just live the life I was given.

Smoke and IVs

If you watched the news last week you may have noticed there were some catastrophic fires on the West Coast that completely devastated communities. We were so fortunate to be far enough away to be safe from any flames and destruction. We did, however, have a much less threatening, but relatively scary side effect from the fires. Our city and surrounding area was completely engulfed in smoke. When the fires first broke out some smoke made its way to our area, but we have experienced smoky days from fires in the past. We usually avoid exercising outdoors for a few days and move on with life so I assumed we would have a few days of avoiding the outdoors and life would go on. Sure enough on Saturday Kaylee's soccer game was canceled and we spent the weekend indoors to prevent breathing in the bad air. We had no idea that within a week the air would go from unhealthy to hazardous which would result in our local schools shutting down. By midweek the air would be so thick that visibility would resemble the foggiest winter morning. It was terrifying that we were breathing such horrible air, but it was even more heartbreaking that the smoke that filled our neighborhoods was carrying small fragments of other people's destroyed homes, and family heirlooms and human lives. 

Several of my friends fled and a few close friends invited me to stay with them in their Airbnb or hotel rooms in the mountains at an elevation that sat above the smoke. I had a strange predicament in that I was on IVS (again!). I guess I should back up and explain the IV situation really quickly...

I went to clinic a few weeks after stopping IVs and blew a 34% on my PFTs. It was up 5% from pre-IVs, but over the summer I blew 40% so we weren't happy to settle for 34 anymore and I went back on IVs for 7 days. I was finishing up IVs when the smoke rolled into town and I called my doctor genuinely terrified of what breathing "hazardous" air and what it would do to my lungs. We decided to extend my IVs just a few more days.

With the extended IVs came drug deliveries and needle changes which didn't really work if I was 2 hours away in the mountains (not to mention that high elevation is pretty hard on me). So we hunkered down with the doors sealed off to prevent smoke from leaking in through any seams and the air purifiers on full blast. My extended family and I eventually left the area to stay in an Airbnb about 50 minutes away so that we would be close enough to return for any CF care issues I might need, but far enough from the smoke that we could go outside.

The rains arrived right before thanksgiving and washed away the smoke that was lingering in the air. I am also officially done with IVs. Unfortunately, Kaylee and I woke up yesterday with pretty bad head colds so we will see in a few weeks if the IVs worked despite the bad air quality and this nasty cold. This Thanksgiving we were reminded to be grateful for all we do have and even when things don't seem to be going well whether it is with health, a career or whatever else seems to be bringing you down, that we are so incredibly lucky to be alive and able to experience this beautiful life.