Fifty Years

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This August, my parents celebrated their 50th wedding anniversary. What a milestone! Our entire family gathered on Labor Day weekend to celebrate with them.

My parents’ marriage has been marked by much joy–six daughters to raise, sixteen grandchildren, wonderful friendships, and rich experiences. They have weathered significant storms as well–caring for children with chronic illnesses, a job that was at times very stressful and demanding, the death of a newborn son and a 35-year-old daughter. The loss of a grandson at birth. Through the sunlit days and the dark storms, they have remained faithful to their vows to love and support one another. Their marriage has been a source of joy and strength for them and for our whole family.  Their example of love has breathed life into my marriage and those of my sisters as well. We are so grateful.

The weekend was wonderful. It is difficult to get such a large group together since we hail from many different cities and states. But when it happens, it’s fabulous–a time full of joy and celebration. Our family has been so blessed.

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The happy couple (and Lucas). 

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Dad and Mom with all 16 grandchildren!

Cousins!

Lucas loves his cousins!

Jaime and I were talking about the experience one evening, a few days after we returned home. After a brief silence, he asked, “Do you think we will have 50 years together?” I felt my throat tighten. We don’t often have these types of conversations. They are frightening. And of course, we can only guess at the answer. But sometimes, those questions that weigh on our hearts but rarely make it to our lips, have to be voiced.

When Jaime and I were married, I was experiencing excellent health. My lung function was comfortably in the 80s. I had very few limitations, if any. I knew my health could change. Jaime knew my health could change. We had front row seats to the devastating effects of cystic fibrosis. But my reality was so different at the time that it was hard to imagine the struggles that have since invaded our lives and our marriage. At that time, 50 years seemed possible. But now?

My favorite Psalm is Psalm 139. It speaks of God’s intimate love for us and His faithfulness to us throughout our entire lives–from the moment He gives us life until our last breath. Verse 16 says,

Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

I don’t know how many years of life I will have or how many years of marriage we will enjoy. But God does. My days may be cut short by human standards, but it will still be a full, complete life. I will live not one second more or one second less than what God, in His sovereignty, has already ordained. I will be here until the work that He has set out for me on this earth is done. That brings so much comfort.

Will Jaime and I have 50 years? I hope so. I want to experience the same type of long, satisfying marriage my parents have enjoyed. I want to pass on that legacy of love to my son. I adore my life, my husband and my boy. I want to be here to experience all the joys and all the struggles–to share those sunlit days and dark storms together. I want to see my hair change to gray, the lines on my face deepen, to have the joy of holding a grandchild in my arms.

We pray for miracles–that God might heal me, and that a cure might be found.  We pray that medical advancements will be made that will greatly extend my life, or that God would simply give me the strength to continue on with a compromised body. In the meantime, we give thanks that our lives are safely held in God’s hands. Fifty years seems unlikely right now. But no matter how many years we have, we are so grateful to spend them together fulfilling our vows to love and support one another in sickness and in health.

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To have and to hold, until death do us part.

Hair, Hair Everywhere

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Sometimes chronic conditions such as cystic fibrosis come with secondary issues. They can be directly related to the disease itself such as Cystic Fibrosis Related Diabetes. There can be damage to organs, bones, or veins due to ramifications of the disease, extended medication use, and the poking and prodding that becomes necessary to treat the condition.  Or there can be temporary secondary issues caused by drug side effects.

If you’ve been following along, you know that I was put on an anti-fungal drug to treat aspergillus (a mold growing in my lungs) as an effort to raise my lung function after a series of serious illnesses last winter and spring. I was warned that the drug came with a lengthy list of nasty side effects.  A few of them were instantaneous–vision changes, photosensitivity, hallucinogenic dreams. They were not fun, but they stopped as soon as I was off the drug. Recently my hair starting falling out, not en masse, but at a much, much higher rate than normal. This problem has persisted even though I’ve been off the medication for over a month. I talked to my doctor, and sure enough, hair loss is on that lengthy list. No one can tell me with confidence when this will stop. I have valid concerns about how much hair will actually be left on my head if it keeps exiting at this rate!

All this hair loss has made for an interesting several weeks at our house. When it first started falling out, I was constantly slapping the back of my arms, sure there were spiders or mosquitos eating me alive. This garnered a few interesting looks from Lucas who was wondering what on earth I was doing to myself.

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Sometimes when the light hits the carpet just right I’ll see a hairball…or two…or ten.  I find hairballs stuck to our clothes. I’ve been pulling hair out of Lucas’s play doh. I’ve been picking it out of our food. The other day at lunch, Lucas and I were playing the raise-your-hand-if-you-like-to-eat game. After a few normal items such as apples, tomatoes, cucumbers, he said, “Raise your hand if you like to eat hair!” Poor kid, he’s been eating a lot of hair lately. Neither of us raised our hand.

The hairballs on the carpet and in the laundry are bad, but they don’t hold a candle to my bathroom.  I’m constantly picking hair out of the shower, out of the sink, off the floor, and out of my brush. I looked in my trash can the other day and did a double take. It looks like a family of furry little rodents have taken up residence in there!

I’ve been told the hair loss is not that noticeable. It looks and feels very different to me, and based on the current circumference of my ponytail, I’d estimate I’ve lost at least a third and maybe as much as half of my hair. But I’m glad it’s not obvious to the rest of the world. I thought about getting my hair cut shorter in an attempt to make it look fuller, and give the new baby hairs (which I hope are already sprouting), a chance to catch up. But I have a little boy who loves my long hair. He comments on whether it’s down, or in a ponytail, or in a braid. He positions my pony tails and braids so they wrap around my neck. He might be heartbroken if I cut it. My big boy might be too.

I’m not enjoying this and I certainly have had my moments of eye rolling and exasperated sighs. I don’t know anyone, male or female, who feels good about losing their hair. It’s one of the hard things about a chronic disease–all these additional annoyances. But I’ve learned that in instances like this, it’s important to keep perspective. After all, this is not a weighty issue such as lung function and has no bearing on my survival. I can live just as well without the hair, and the hair loss should be temporary. People lose their hair for many reasons, and I’m thankful that this is not a result something much worse, like cancer.

It isn’t always easy to keep a positive attitude. These types of issues, minor though they are in the grand scheme of things, feel like insult added to injury. The sum of many of these little insults can seem unfair and can accumulate into a real burden if I focus on them. It’s easy for negative thoughts and attitudes to creep in…but it is precisely that which steals joy from my life. I cannot waste my energy worrying about the little things because I need that energy for dealing with the serious problems that come my way. Part of living victoriously in a battle with chronic illness is to push through the negative and focus on all the good, all the blessing, all that’s going right in my life–to have a joyful heart in spite of the aggravations that come along with this disease.

Even in this circumstance, I have many things to be thankful for. I’m grateful for strong medications that treat my disease and extend my life, even when they have negative side effects. I’m thankful for my four-year-old who thinks it’s hilarious when I dance around trying to get imaginary spiders off my arms. He makes it a lot easier to choose a joyful attitude. I’m thankful for husband who will never stop loving me no matter how much hair is on my head.

What I’m most thankful for, is that I’m loved and cared for by my Heavenly Father. Matthew 10:30 says that God knows me so intimately, He even knows the exact number of hairs on my head. Knowing I am loved by God, that He understands every hurt and frustration, that He will never leave me and is using my light and momentary troubles to achieve eternal glory, that is where the true joy and peace comes from.

Hair, hair, everywhere…I don’t really need you, so I’m trying not to care 😉

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.

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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.