A Health and Exercise Update

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Friday, September 9th was clinic day for me. It had been three months since I’d been in to see my CF doctor. That means that for the past three months, I’ve felt good enough that I didn’t need any visits outside of my routine check ups. I really like my doctor and I’m pretty sure he likes me too, but we were seeing way too much of each other over the winter months.

I didn’t feel too nervous leading up to the appointment, not until right before my breathing test. Then sure enough, I felt my heart rate start to rise. There are just so many nerves when it comes to that test. I have felt healthy and strong all summer which is the most important thing, but you just never know what that FEV1 number will be. It’s hard not to be anxious.

In the end I scored a 39%. It would have been great to see a big jump since I’m feeling far stronger and healthier than I did three months ago when I scored 38%, but I’ve been through this enough times to moderate my expectations. It didn’t go down so we’ll call it a success!

Everything else checked out great–my heart rate returned to normal after the test, my oxygen saturation was good, my lungs sounded clear, and my blood pressure was normal. All good signs of health. My doctor was very pleased with how I was doing and was especially happy to hear about my exercise tolerance which he reminded me (again) was just as if not more important than what my FEV1 says. He also brought to my attention that in spite of several illnesses over the winter, my FEV1 stayed stable during and after the illness and didn’t dip like it did with my struggles in the winter of 2015. Stability is a wonderful, wonderful thing when you struggle with a chronic and progressive disease like CF. I am so grateful.

Which brings me to my next update–Operation Lace Up! A few months ago I wrote that I had achieved my goal of running two miles without stopping but I intended to work on diminishing the amount of time it takes me to get through those two miles. At the time I was running them in about 26.5 minutes.  Well…I’m still running them in about 26.5 minutes. I did start working on reducing my speed as planned, but I found that when I pushed myself even a little bit harder, I was getting over tired and not having energy for the other things I wanted to do. I took a step back and reevaluated my goal. I decided to continue to run two miles three times per week at the slower pace and to shoot for increasing my overall level of activity by getting 10,000 steps or more every day (which my Fitbit measures), workout days included. The summer is a great time to be active, and specifically this summer, I had a lot of work I wanted to do on the exterior of the house after being bitten by the Clean Window Perspective bug. I had areas in the yard I wanted to spruce up and Jaime and I decided this was the summer to paint our house.

I’m sure I don’t have to tell you that yard work and painting are physically challenging to someone with reduced lung function, but I love doing these types of jobs! The sides of our house and the perimeter in the back were overgrown with weeds, so I set out to clear the weeds and move rocks from the back to the sides where they could be more useful for weed management. I’m not done yet, but things are shaping up nicely.  Here are a few photos…

 

You maybe wondering what Lucas was up to while I was doing all this work. As you can see, he helped us paint (for a few minutes) but it took some creativity to keep him occupied most of the time. I put up a tent which I filled with books for him, turned on the sprinkler, even filled a snow sled with water. (Think portable bathtub).

Working outdoors (and going back indoors a hundred times to get the other book or bath toy that Lucas wanted) really racked up those steps! So far I have been successful with my goal and am on a 75-day streak of getting 10,000 steps or more. I feel like this increased level of daily activity has improved my energy and stamina which I’m very happy about. Fall is here now and winter is coming, so I’m sure it will be more difficult to keep it up from here on out. But I’m up for the challenge 🙂

Young Fives

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The day after Labor Day was Lucas’s first day of school for this year. He is attending a half day Young Fives program at an elementary school in our district. A few weeks before school started he told me he was so excited for school to start! I wasn’t sure I believed him. Up until now, he has been very reluctant to embrace any changes in his life. However, the first day of school dawned, and he really was ready to go!

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Our sweet, eager boy on his first day of school!

Jaime drops Lucas off at school each morning, and after they were packed up and on their way that first day, I headed back downstairs to start my morning treatments and therapy. I was anxiously awaiting a phone call or text from Jaime to hear how it went.  About 20 minutes later I got this photo:

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First-day-of-school pasta necklace.

Lucas had walked right in, sat down, and got right to work on a pasta necklace. No tears, no clinging, no nervousness. Just a cheerful, “Bye, Dad!”

When I picked him up three hours later, he was all smiles and excitement. And he is still all smiles and excitement three weeks later. He is eager to go each morning, and he’s been on time every day. Well, almost every day. His morning chauffeur overslept once and they were a few minutes late. Lucas tells me all the time he loves school. We couldn’t be more pleased!

Being five, Lucas doesn’t give me a detailed report after school, but he will tell me one or two things about his day on the way home, and a few more details surface as the afternoon wears on.  Here’s what I’ve gleaned so far:

  • He adores his teacher. Apparently all the kids think she is the “awesomest.”
  • It took his teacher less than a week to figure out his favorite color. It is tradition for her to locate the orange in his outfit each day.
  • His favorite special is gym because of all the running around. No surprise there. It seems they play freeze tag a lot.
  • His best friend in the class is a boy named Beckett. They play chasing games at recess together every day. I’ve noticed that Lucas and Beckett are the only two kids dripping with sweat when I come for pick up.
  • He has never once used the bathroom at school. He disapproves of public restrooms and the classroom bathroom is no exception. Thankfully he can get through three hours without going.
  • Lucas loves playing with his own classmates but doesn’t like it when additional classes are on the playground. Apparently there are some loud girls in the other Young Fives class. He doesn’t approve.
  • The students have to sit “criss cross applesauce, pepperoni pizza sauce” during circle time. Some things never change (although we had a much more boring and politically incorrect name for it).
  • The class did a unit with Jan Brett’s book The Gingerbread Baby which Lucas loved. Being a teacher myself, I happened to have a copy in my office. I brought it up and it found its way into our bedtime story lineup. It’s a very long book.  Jaime is still mad at me.
  • I heard Lucas quoting a line from Froggy’s First Day of School by Jonathan London after his teacher read it the other day. I have that one in my office too. I plan to bring it up after I’m sure Jaime has forgiven me for The Gingerbread Baby. 
  • Lucas hopes to be in Young Fives for a very long time. Jaime told him one morning that it was his last day of school (meaning for the week) and Lucas got teary. He was relieved to hear there were still approximately 175 school days left.
  • So far there haven’t been any traditional worksheets from class, but he did bring this home from his math center:
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Lucas’s very first worksheet.

Okay, so he had seven stickers for the number six and his name could use some work, but we’re still pretty convinced he’s a genius 😉

We are so pleased with how this year has gone so far, and proud of our big boy for making such a smooth transition to five school days a week. Jaime was exhausted after the first few days of getting the two of them out the door on time, but they’ve settled into a routine and it’s gotten easier. And for me, the schedule is heavenly. I can sleep until 8:00 most mornings. I then have three hours after they leave before I need to head out. I can get through my treatments and therapy in peace. By the time I’m through those and I’ve eaten breakfast and gotten ready for the day, I usually have 45 minutes to play with. It’s great to get a load of laundry folded, some tutoring preparations done, make some phone calls, or run a quick errand solo before I’m reunited with my bundle of energy. And once he’s back home, we still have plenty of afternoon hours for our adventures. It’s great. Young Fives. We all love it.

A Look of Love

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This time of year always stirs up my emotions. As the summer draws to an end and Labor Day weekend approaches, my mind wanders back to that summer of 2004, the summer when Sheri was dying. I saw her several times then, as much as her energy would allow. In the earlier months I would bring food for her and we would play games or work on crafts to pass the time. As the summer drew to the end, the visits were short and she wasn’t able to do much more than lay on the couch.

Time softens the pain of losing a loved one in some ways. I have gotten used to not seeing her regularly. I don’t expect to see her name pop up on my email or see her neat, cursive writing on a card in my mailbox. But each year at this time, when I reflect on her life and her death, the wound reopens and feels as raw and fresh as it did that first day when I knew I wouldn’t see her again on this side of eternity. There are always torrents of tears as that longing surges up–the longing to see her, hold her, touch her, talk to her and share life with her once again.

Last night I was looking through a box of memories–photos of Sheri, emails and letters she wrote, her book of poetry. I found a few pages I had written the month after she died. I wrote:

I remember when Sheri had a bad lung infection, a blocked bowel, and the tobramycin in her system got to toxic levels. She lost part of her hearing. She lost kidney function and had to go on dialysis for a while. She was in Ann Arbor, away from home for weeks. I remember I drove her and Mom to the hospital. She had a towel and a bucket with her in case she threw up. That was the weakest I’d ever seen her. She turned and gave me a look of total love and compassion before she stepped out of the car. It was the same look she gave me the second to last time I saw her alive. I hope I never forget that look. So much was wrapped up in it. She felt so much compassion for me, watching her go through her pain and how much it hurt me to see her like that, and compassion for the fear I felt in wondering if I’d ever go through similar things, and the love she had for me and how much she wanted to protect me from all the pain she’d been through. All that was in her gaze.

I remember that moment clear as day. I can still see her with her towel and bucket and more importantly, I can see that look of love. In the midst of one of the most trying and painful times in her life, she was reaching out to me with her eyes–extending comfort, love, and understanding.  She was not so overcome by her own struggle to miss the grief of her little sister who was sad and more than a little bit scared.

That look of love brought me comfort then and it brings me comfort now. I remember Sheri’s strength, her courage, her poise, her compassion, and especially the feeling of her love. She fought for life and brought so much joy, laughter and grace into our lives. She refused to be defeated by pain. Her life may have been short by today’s standards, but she used her life for good and for God’s glory. And now in heaven, she’s experiencing only joy and peace–no need for tobra or towels or buckets or tears. Her example gives me courage and strength.

I see Sheri’s gaze only in my memory now, but I know God looks on me with those same eyes of love. His love is an everlasting, steadfast love. His mercies never come to an end. The sadness is there. The fear is there. But God is also there. And someday, we’ll be together again. When God’s purposes for my life are complete, I’ll join Sheri in heaven. It’s fun to imagine what we might do. Run a marathon just because we can? Have French fries without the side order of pancreatic enzymes? Have a fit of laughter that doesn’t end with coughing? Those things are just silly fantasies and chances are, none of that will matter. But I’m pretty certain, when I see Sheri, I’ll get to see that look of love again.

Sheri Leigh VanBruggen, September 26, 1968 – September 4, 2004

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Our Sheri, in 1985.