A Little Help From Aunt Sheri

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I was still in college when my sister Sheri gave me a gift. She had been a special education teacher for more than five years in a Michigan town before the stresses of the job combined with her CF struggles became too taxing on her body. The district in which she taught was a low-income area that housed a prison, and some of her students had parents or other relatives in that prison. The needs were great. Sheri’s heart was big and she was the perfect one to love and nurture these children while helping them learn.

Because her district didn’t have the resources that some wealthier areas have, Sheri invested a great deal of her own money and time into making materials to use with her students. Her creativity really shone through in a lot of what she made, and when she left teaching, she brought some of it home with her. She gave it all to me while I was in college preparing for my own teaching career. I was able to use her creations in my own classrooms and later, with my tutoring students as well.

This fall I acquired a new student…an extra special young five named Lucas. At conferences, his teacher mentioned that he could use additional practice with fine motor activities such as writing his letters and cutting. For several years now, Lucas has been asking when he would be old enough to be a tutoring student and this was the perfect opportunity to make extra practice at home exciting for him! I put together a program which included muscle strengthening and fine motor practice but also tasks I knew would be fun and easy for him to make it an enjoyable time for both of us. When I broke the news to him he was thrilled and proud to be old enough to come to my office like a big kid. And I was excited too! It’s been lots of fun to have these two loves of mine intersect. Lucas has been an enthusiastic participant.

I was also excited to take out some of Sheri’s creations that had been dormant for a while. I told Lucas all about how she had been a teacher and how she had made a lot of the tools we were using to learn. We keep a picture of her nearby while we work–a Christmas ornament she made with her students one year. I even found some fun animal pencils she and I had made together once and the cat pencil has become Lucas’s official tutoring pencil.

I wish that Lucas could have known Sheri and that she could have known him. Someday that wish will come true. But for now, I’m so grateful that she can still be part of his life, even in this small way, and that we can remember her together as we learn.

img_0985Lucas was one excited boy on the first day of tutoring! He even uses the outdoor entrance like my other students do. After all, he wants it to be official!

Coloring, cutting, matching, tracing. It’s all good.

Here we’re using some of Aunt Sheri’s materials! Lucas is holding her special pencil and ornament, working on more matching activities that she put together, and jumping on vinyl letters she cut out and labeled to blend sounds into words.

img_1535Today in tutoring we learned how to draw a cat. Perhaps Lucas didn’t inherit Sheri’s natural artistic abilities, but I think they’re great and I know she would have liked them too. 🙂

Sheri, thanks for the help! Your legacy lives on.

The Uncommon Cold

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Cold and flu season. The bane of my existence.  Okay, maybe that’s a bit of an exaggeration, but the viruses lurking around every corner this time of year stir up a bit of panic in those of us with chronic lung disease.

The past few years I’ve gotten my first cold just before the holidays, in December. This year, I got my first cold at the end of October, and I was less than enthusiastic about its early appearance. It started on a Thursday evening while I was tutoring. My throat began to feel a little dry, a little sore, a little unwell. The panic set in. Calm down, it’s just allergies, I told myself. But I had a nagging suspicion that was confirmed when I woke up the next morning with all the classic symptoms of the common cold.

Those first days of a cold cause a great deal of stress for me. CFers can never just “relax” and let the virus run its course. For the average person, a cold means a short period of annoying, uncomfortable symptoms, followed by the return of normal life. The common cold usually lasts 7-10 days. If you are a CFer reading this, I’m pretty sure you just laughed or rolled your eyes. I don’t remember the last time a cold lasted 7-10 days for me. For CFers, the common cold means annoying, uncomfortable symptoms, but it also includes the threat of a much more serious infection that can result in weeks of illness. Sometimes these illnesses can result in the permanent loss of lung function. The common cold is plain scary.

My cold lasted, from that first scratchy feeling in my throat, to the day I woke up feeling like myself again, exactly 38 days. Over five weeks. Here’s an outline of how my [un]common cold progressed:

Day 1: Uh oh…sore throat…the feeling of impending doom sets in. My poor husband is subjected to a great deal of my angst which is bubbling over as I see the worst case scenario playing out in my mind and sadly bid farewell to my six-month, illness-free streak.

Days 2-8: I sludge through the cold symptoms while trying to keep tabs on the health of my lungs. I worry. I ask Jaime 100 times a day if he thinks my cough sounds okay. It does. I try to relax.

Day 9: The virus hits my lungs. Each breath is a cacophony of various wheezes and hums and vibrations. I call the doctor and start on two oral antibiotics.

Days 10-16: I wait for my cough to improve. Still waiting. “Mommy, why are you spitting your fungus in the toilet?” Lucas asks. He tries to join me but he’s only got saliva in there. No fungus (or mucus) for him. I laugh and thank God for five-year olds. Still waiting on that cough. C’mon antibiotics, you can do it!

Day 17: My cough beings to improve. The Hallelujah Chorus plays in my mind. I try to join in. Yeah, my cough isn’t all the way better yet. I leave it to the angels and keep quiet.

Day 22: I can finally say my cough is back to normal. But this is already my last day of antibiotics. I take my last dose and hope it’s not too soon. Bye-bye security blanket.

Days 23-28: These are blessed days of feeling good. But I know what’s coming…

Day 29: The Adjustment Phase hits.

Days 30-38: I cough and cough and cough and cough (and cough). I have many wonderful friends, but this week, Motrin is my best friend. I need it to get through the day. I remind myself that this will pass. It will.

Day 39: It did! I wake up and realize I can make it through the day without Motrin! My cough is quieting. My muscles are less sore. I don’t have a headache. I’m through my cold and ready to start another illness-free streak. There’s that Hallelujah chorus again! I join in. It still sounds better in my head, so I decide to save that one for the shower.

The good news is that all things considered, this cold was relatively mild and manageable. I was able to function fairly well through it and I’m sitting here today, six weeks out, feeling good. I’m so very grateful for that! Perhaps an early cold this year will mean less illnesses overall this season. A girl can dream.

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Kisses from this little guy always make me feel better when I’m sick.

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Kisses from this big guy help a lot, too.

Conversations with Lucas, Part Five

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It’s time for another installment of Conversations with Lucas! I hope they bring a smile to your face 🙂

L: Mommy, am I holding my pencil right?

B: Yes Baby, that’s right.

L: Oh thank you! That fills my heart with joy!

[Mine too.]

*

L: Mommy, no one is allowed to touch the cell phone tower. No parents and no kids. But I am.

B: Oh, do you have special privileges?

L: No, I have gloves.

*

L: Daddy, I want you to read this book! [Points to The Three Little Javelinas by Susan Lowell]

J: Oh, the Three Little Javelinas.

L: Dad?

J: Yes?

L: Would you please stop speaking Spanish and read it the way Mommy does?

*

[Lucas, singing a song from church]

J: Lucas, if you know the songs we’re singing during church you can always sing along!

L: I know, but do you know why I wasn’t singing at church, Dad?

J: No, why?

L: I was waiting for the part where we eat the bread and dip it into that cup.

B: Oh, communion!

L: Yeah, I love that part.

B: Me too. Does it make you feel close to God?

L: Yeah, well, it’s just that being at church makes me really hungry.

*

L: Mom, do you know what?

B: What?

L: You and I have belly buttons.

B: True…

L: But Daddy doesn’t have a belly button.  Daddy has a belly hole.

*

L: Daddy and I are your husbands!

B: Well, Daddy is my husband and you are my son.

L: But we both take care of you and that’s what husbands do!

B: Yes, you’re right, but sons can help take care of their moms too.

L: Okay, I’m your five-year-old son and husband helper!

*

L: Mommy, Henny’s not playing in today’s soccer game.

B: Oh, that’s too bad.

L: Yeah, she has an attitude.

B: Uh oh!

L: Mommy, what’s an attitude?

*

L: Mommy, you feel warm.

B: I do?

L: Yeah.  Your skin is so warm it feels like the fur of a fox.

[He knows this because of all those foxes he’s touched?]

*

[Riding the bus to the hospital]

B: We’re going to pass your old preschool in a minute! And then we’ll pass by Aunt Ede’s work.

L: Then where, Mommy?

B: Then we’ll be on our way to the hospital.

L: Wow! You know almost everything!

*

B: Honey, can you please sit at the table while you’re eating? You’re making a big mess.

L: But Mommy, I can’t just sit still! I need a lot of exercise!

*

J: Did you have fun even though you didn’t want to go?

L: Yes! It was so fun!

J: I had fun too even though I didn’t want to go either.

L: But Mommy did.

J: Yeah, she was right. We should probably just listen to Mommy.

L: Yeah, girls know the right thing to do. They have better ideas than boys.

*

B: I have something to tell you. You and I are going to get a flu shot today.

L: NOOOO!!!

B: But wait, I didn’t tell you the good part yet. Daddy got the movie Inside Out for you from the library and we can watch it when we get home as a “thank you” for being brave and getting the shot.

L: Okay, I guess I’ll go.

[After surviving the shot and both watching and loving the movie…]

L: Mommy I really appreciate this.  Thanks so much for getting me that shot!

B: Um, you’re welcome?!

L: Next time I get a shot, I’ll say to the doctor, “Thank you for the shot.”

[We’ll see about that :)]

*

L: Mommy, I’m going to tell you a story.

B: Okay!

L: Once there was…[story continues for a good, long while].

B: Wow, that was quite a story!

L: Did you like it?

B: Yes…

L: Good! Because I’m going to do it again, but this time I’m gonna sing it.

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Thanks for all the smiles, funny boy.

Space for Grief

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Living with Cystic Fibrosis is hard. I am reminded daily that my body does not work properly and that to continue to live, I must fight. Some days I become weary. Some days I feel sad. I’ve been learning lately to give myself space for grief. Grief is unpredictable. It can be triggered by an event or a period of intensified struggle, and sometimes it surges up unexpectedly.

I’ve had a few times recently were grief has darkened my day. These dark days have traditionally made me feel guilty. I regularly see quotes such as these:

Someone out there is praying for all the things you take for granted.

Remember, no matter how many problems you have, there is always someone who has more.

These sentiments surely have a place in our world. In our consumerist culture it is easy to be in a perpetual state of discontentment and lose sight of all our blessings. We complain about minor inconveniences. We take things for granted. Many of us, including me, have not suffered the extreme hardships of hunger, violence, abuse, or the loss of worldly possessions that are rampant in parts of our world. It is important to remember that and to retain a proper perspective.

Sometimes when a wave of grief hits me, it brings with it a big dose of guilt. The voice in my head berates me. You have no right to be upset. So many are suffering so much more. Many CFers struggle far more than you do. Remember all those healthy years you had. You have a loving husband, a beautiful son, a supportive family, true friends, a wonderful home. Look at all you can still do.  And the list goes on.

It’s true. I am abundantly blessed and I know it. However, the pain in my life is real too, and sometimes I need space to grieve that. Sometimes I need to pour out my heart to God, lamenting the pain, explaining my hurts, expressing the sadness and disappointment. Grieving doesn’t have to be angry and bitter. It doesn’t have to indicate that I’m not trusting God, or that I feel sorry for myself, or that I’m not accepting my situation. Grieving doesn’t necessarily mean that I’m not thankful. It is possible to be grateful for all the good in my life, all the blessings, all the wonderful things that have come out of my challenges, even to be thankful for the challenges themselves while allowing myself to mourn the pain, the loss, and the ongoing adversity. Some specific struggles have endured for years with ups and downs, times of hope and times of despair, bends in the road, minor bumps and major setbacks. At times I feel tired and bruised. There is chronic hardship in my life that will never leave me. Barring a miracle, there is no end in sight on this side of eternity. It’s hard. It’s sad. And so I grieve.

Tears can be cleansing–a discharge of the pain bottled up within me. It’s as if their release waters the soil of my soul, making way for acceptance, joy, and peace to bloom once again. When I take my hurts to God, I find the grace I can’t always extend to myself. There is no guilt there, no pointing finger, no accusations, only the reassurance of God’s love and His presence.  There is the reminder that while I will continue to struggle, I will never struggle alone. There is healing in that place of grief.

I felt compelled to write this post today. It’s definitely for me. This is something God is working out in my heart. Grief is a gift I’m learning accept without guilt and without comparison. But perhaps it’s for you too. Maybe you need to give yourself some space to grieve.  Maybe it’s time to stop pretending that your pain doesn’t exist, isn’t that bad, or doesn’t matter. Maybe you need to allow those tears to fall so that true acceptance, joy, and peace might thrive in your life again. Maybe you need to hear God whisper to you how much He loves you, how much He cares, and how through it all, He will never leave you or forsake you.

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Weeping may endure for a night, but joy comes in the morning. Psalm 30:5

 

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.