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.

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. 

 

 

To Sheri

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I’m having trouble finding words for today–words to honor you for the beautiful, faithful woman you were. I need words of love and admiration because you were strong and kind and selfless and I always looked up to you. I need words of thankfulness because enriched my life so much and your example continues to guide me on my journey.

But I also need words of heartbreak because you’re gone and I miss you so much. The grief of losing you, the pain that’s been part of me for eleven years now, it’s sharp today. I would give anything to see you walk through my front door. Maybe we would share a Faygo pop–half regular, half diet, just as you liked it. I would tell you what I’ve been up to.  We would talk about crafts and you would show me all the projects you had planned. I would tell you about my current students, and you’d have some great tutoring ideas for me. I would make you laugh with funny stories about Lucas (and Jaime, but those would be secret). You’d have some advice for me–words to encourage me in my current challenges, words of empathy because you knew my struggles like the back of your hand. 

I know it would have been hard for you to see me struggle, the protective big sister you always were, so perhaps it is a grace that most of my health issues occurred after you were gone. However, I wish I could tell you in person that I understand on a whole different level now what you went through and it has made me admire your strength and poise even more. I wish I could have supported you better, as someone in the know. 

We are not the same without you.  But I’m glad for the pain because it reminds me that our relationship was deep and full–one worth having. And so it hurts to live without you. There is a hole that will never close up–not until we meet again and all is made right. But that day is coming! I so look forward to seeing you again. For now it’s comforting to imagine you in heaven, still living fully, but also living free. 

I love you, always and forever.

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

Changed

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My sister-in-law, Sheri, died on this day eleven years ago. It really is incredible to think that much time has passed. So much has changed since she left this world. But a lot changed while she was still alive too. And a lot of that change was because of Sheri.

Shortly after Betsy and I were married we were all gathered together for a mini-family reunion. One of the afternoons it was decided that we would take a field trip to a local used bookstore. Amongst Sheri’s many qualities, she was exceedingly generous so before we entered, Sheri handed everyone a five dollar bill. Sheri was also always on the lookout for a great deal and I think she was excited to see what hidden treasures each of us might unearth in the stacks of used books.

I picked up two or three books that day. But the one that I will always remember was a big, green cookbook. That’s right, a cookbook. It was an odd selection, because at the time I didn’t cook. Gender roles in my family growing up were pretty traditional. There’s nothing wrong with that, of course. But it did mean that I was used to the women doing the cooking. The only real reason I ever ventured into the kitchen was to try and steal cookie dough while my sisters were baking! In any case, the title caught my eye: The Art of South American Cooking. I picked it up and started paging through it. It contained recipes for some very familiar dishes as well as some I’d never heard of but sounded tasty.

TheArtOfSouthAmericanCooking

After all these years you can barely make out the title: “The Art of South American Cooking”.

I found a couple of other books and went to pay for them. All three books and I had change left over – a great deal! Sheri was interested to see what I had picked out. As I recall her exact words were, “I’ll look forward to you cooking something for us!”. I didn’t want to burst her bubble. She’d obviously not understood that I was really buying the book for Betsy.

That reunion weekend was pretty much the last of the summer fun. Upon returning, Betsy started her second year of teaching and I was started work on my master’s degree in Economics. Curiously, I seemed to have a lot of time on my hands. I remember one day feeling oddly guilty when Betsy arrived home, exhausted after working a full day teaching the youth of America and still had to fix dinner. I think my accomplishments that same day had included reading a couple journal articles, going for a run, and watching two UEFA Champions League soccer games.

So the next day I got out my green cookbook and decided I would give cooking a try. I decided to go with something that I’d never tried before – pollo al palillo. Basically chicken with yucca root in a fluorescent yellow colored sauce made of lime juice, tumeric, and cumin. And it even turned out to be edible! I was probably more pleased with myself than I should have been. Betsy was very appreciate of my efforts and made it clear that from now on, I was welcome to share the cooking responsibilities. What had I gotten myself into?

Now, I love to cook! I love to prepare meals for Betsy and Lucas. I love to have people over for dinner. My cooking has been largely influenced by the semester abroad I spent in Spain. Some of my favorite dishes to prepare include: estofado de buey, tortilla de patatas, pollo al chilindrón, empanadillas de carnelentejas. Mmmmm. I never got a chance to cook that meal for Sheri but I think she would be proud of my culinary skills. I think she would be even more proud that I learned something new, something that, over the years, has helped me to take care of her little sister.

I’ve accumulated lots of other cookbooks over the years but that first, big, green cookbook will always have a place on our shelf. It reminds me of Sheri. It reminds me that, through the small gesture of buying me a book, she helped me to become the person I am today. And I think that’s probably true of everyone that came to know Sheri. And while we miss her greatly, we are constantly reminded that we have been changed by her example of love, kindness, faith, perserverance, and joy.

Changed for the better.

We miss you, Sheri.

Unchanged

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About a week ago, Jaime published a post entitled Never Give In. He was excited for me because I’d just accomplished my goal of running two miles in 25 minutes.  He called me resilient.  He called me tenacious. High praise, indeed.

A week out I’m feeling anything but resilient and tenacious.  I guess you could say I’ve been knocked down. I had a routine pulmonary appointment several days ago and I was hoping to see my FEV1 rise up.  It had fallen to 32 during a severe, extended illness this past winter, but was coming back up and had landed at 42 at my appointment two months ago.  I have learned to moderate my expectations because my FEV1 scores don’t move easily, not in the right direction, anyway. The running goals I set were part of my endeavor to regain lung function as I continued to heal from the illnesses of this past winter. I wasn’t expecting a giant gain but was hoping for a few positive points to show me I’d been successful.

I ended up getting 42 again. My score was unchanged. There was zero improvement. At first I talked myself into feeling okay about it. I know the number is less important than how I’m feeling, and I’ve been healthy and strong this summer. But sure enough, as the hours passed, discouragement settled in.  I worked hard. Really hard. I wanted a better score.

My doctor was surprised that I hadn’t made any gains as well, especially since everything else during the exam looked great. He decided to order an echocardiogram to see how my heart is doing. Because of how well I am functioning, he didn’t expect to see anything concerning. A positive result would confirm our suspicion that I’m healthier than my FEV1 would indicate. I thought for certain things would look good.

But we were both wrong. Although my heart muscle is performing well, the pulmonary artery which supplies blood to the lungs was under greater pressure than either of us expected. This indicates that my heart is working extra hard to push blood through the arteries in my lungs, most likely because those arteries have narrowed or are blocked in some way. This negative report was incredibly disappointing. Knocked down.

I gave my treadmill a long, hard stare before I got on it the other day. There was a large part of me that wished to wallow in self-pity, take a few weeks off, cry some crocodile tears over the fact that my efforts didn’t pay off in the way I wanted them to. But that would be giving in. My heart definitely wasn’t in it, but I mounted the beast and banged out those two miles. I did it again two days later. I have to do what I can. I have to try.

I feel insecure right now. A FEV1 score at the lower end of the moderate obstructive range…a pulmonary artery under too much pressure. These are not comforting thoughts. These test results aren’t written in stone…it is still possible for my lung function to rise and the pressure in the pulmonary artery to subside. But there is nothing additional that I can do to facilitate these changes.

With that in mind, I must return to the true source of my hope. It is not in myself or my efforts. It is not in my doctor’s expertise. It is not in my therapies, my treatments, or in my ability to avoid germs. It is the hope I have that my life is held in the loving hands of my Savior, and that He has a purpose and a plan for me.

Several verses surfaced in my mind after I got that disappointing call from my doctor.  One was 2 Chronicles 16:9 which says:

The eyes of the Lord run to and fro across the whole earth to show himself strong on behalf of those whose heart is loyal to Him.

Another was from 2 Timothy 1 (verse 7):

For God has not given us a spirit of fear, but of power, and of love and of a sound mind.

Another was Isaiah 54:10-11:

For the mountains shall depart, and the hills be removed; but my kindness shall not depart from you, neither shall the covenant of my peace be removed, says the Lord who has mercy on you. Oh you afflicted one, tossed with tempest, and not comforted, behold, I will lay your stones with fair colors, and lay your foundations with sapphires.

Sapphires always remind me of my sister Sheri.  She was born and died in the month of September. The sapphire was her birth stone–both the start of her life on earth and the start of her new life in heaven. Her existence was marked by struggle but she never shrank back from the challenges that came her way. The result was a life and legacy full of meaning and beauty. A sapphire is a fitting stone for her. Along with their stunning beauty, sapphires are incredibly strong. The only stone harder than a sapphire is a diamond which the hardest mineral on earth.

It’s helpful to have Sheri’s example when I hit these bumps in the road. She was sapphire-strong because she accepted the strength God gave her and I, too, can take hold of that strength. I can claim it as my own even when I feel angry and defeated–even on the days when I’d like nothing better than to throw in the towel and let someone else be resilient and tenacious. I can hold fast to my faith and to the promises in God’s word–promises of peace, comfort, kindness, and love. He has shown himself strong on my behalf over and over. I don’t know what the future holds and whether God will restore health to my heart and my lungs. They may remain unchanged. But the promises of God are unwavering and ever-present.

They, too, are unchanged.

Do I Hate CF?

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Wonderfully Made

I have seen many people comment about hating cystic fibrosis. CF is personified as the enemy and the accusing finger is pointed. We are angry with it and we hate it. We wish to stamp it out forever. I think it’s natural to look for something to blame in the face of adversity. We need somewhere to go with our anger and frustration. Maybe a part of us feels that if blame can be assigned, and someone is responsible, than bad things are preventable.

Certainly these feelings of rage towards cystic fibrosis are not unfounded.  Cystic fibrosis is an awful disease.  It causes bodies to have great difficulty functioning.  It causes pain and suffering.  It threatens survival.  It steals years of life, health, and the very breath we breathe.  It separates families. It took my sister’s life at 35. I now struggle with the effects of this disease every single day of my life and they are not pleasant. I have felt that anger. I have felt bound by CF.  There are plenty of times that I. Want. Out. I assume my life would be so much better without it.

But when I hear people say they hate CF, or when the thought crosses my mind, there is a part of me that feels uneasy.  These comments have almost felt personal at times. It may be partially because I don’t like aggressive, angry words.  But there is more to it. Although cystic fibrosis does not define me, it is just as much a part of me as my blond(ish) hair, or my blue eyes, or my blood type. It is written in my very DNA. There is no version of me that could exist without it.

Psalm 139 verses 13-16 say this:

“For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”

God created me and made my body wonderful, cystic fibrosis and all. I believe that the presence of diseases like cystic fibrosis are a deviation from God’s perfect creation: that they are a result of the powerful presence of evil in the world.  They are certainly not what God intended.  So I don’t mean to suggest that God glories in the ugliness and devastation of this disease.  But He does glory in bringing love, life, strength and renewal out of pain and struggle. God brings beauty out of ashes.

And so from the time I was born, God began the wonderful work of redeeming this cystic fibrosis, yes, this disease, this hardship in my life, to be not a despised part of who I am, but an instrument of good in my life.  I have learned many lessons from this disease–lessons that have increased my faith, deepened my character, strengthened my relationships, given me perspective on what’s important, and put me in a place to be able to reach out to others.  CF has been a great burden, but also a great blessing.

So do I hate CF?  No. Yes. I don’t know…maybe. I sure feel that way sometimes. I hate the destruction and suffering that it brings. But I am eternally grateful that in the hands of my Savior, this horrible disease can be transformed into a pathway for blessing.  I’m not certain my life would be better without it.

I am fearfully and wonderfully made.

Mornings

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It was my sister Sheri’s birthday last month.  She would have been 46 years old if she were still counting years here on earth.  In honor of her, I’d like to share one of her poems.  She published a short book of poetry in 1996, and this poem, “Mornings”, was written in 1995.

Mornings–

Isn’t it wonderful

the way God created mornings?!

Each one new.

Each one fresh.

Yesterday’s problems

are only memories.

Mornings mark a new beginning.

 

As each day dawns,

God hands me a crisp, clean sheet of paper

called “today.”

This paper is not crumpled, stepped on, torn;

no words have been yelled or cried;

no phrases have become exasperated

or irritable;

no sentences have been smeared

or smudged.

Nothing has marred its beauty.

Today, all is fresh.

Today, all is new.

 

New mornings fill me with confidence.

As God was faithful yesterday,

so He will see me through today.

His grace will be sufficient

no matter what comes my way.

 

New mornings fill me with hope.

God can make all things new—

new beginnings,

new vision,

new strength.

No matter how dark the night has been,

the light has dawned again.

 

Mornings—

full of promise—

reminders of God’s unfailing love.

I willingly entrust my life

to the Maker of mornings.

 

by Sheri Van Bruggen, ©1996