Coffee & Change

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I love coffee. It’s just so good! I’m one of those people who starts looking forward to my morning cup when I’m heading to bed the night before. I drink my coffee after my routine of breathing treatments and the physical and respiratory therapy I have to do to keep my CF-self functioning. It feels like a reward for getting through the less pleasant parts of the morning.

I love everything about coffee–the smell, the taste, the warmth, and the deep, rich color. I even like the sounds my coffee pot makes while the coffee is brewing. I find them oddly comforting. Those of you who love coffee are nodding your head and saying, “Mmm-hmmm,” right now, aren’t you? And the rest of you probably think I’m a little crazy. ūüôā

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I love coffee memes!

This morning as I was drinking my strong, black brew, I was thinking about how coffee never changes. It’s one of those things I can count on each day. It’s a homey comfort and a fixed part my morning. It’s nice to have simple pleasures like coffee to ground me (no pun intended ūüėČ ).

In another area of my life, I’m in a period of change. Lucas is off to school full-time now, and beyond that, he’s becoming increasingly independent even when he is home. He demanded so much of my time and attention as a baby, toddler, and preschooler. He was a child who needed a lot of closeness and a great deal of attention to feel safe and comfortable in the world. Sometimes it worried me and sometimes Jaime and I both grew weary of it, but we felt strongly that his needs were legitimate and we should do our best to meet them. For five years, taking care of Lucas consumed a great deal of my time and energy. We learned early on with Lucas that developmentally, he did things in his own time. He didn’t always follow the same trajectory as other kids, but once he was ready for a particular milestone, it was as if a switch would flip, and all of a sudden he would be there.

This fall, the independence switch flipped. Suddenly he was comfortable (enough) in big, noisy groups. He was able to handle the chaos of a crowded school. He was happy to play independently for long stretches without having me within his sight. I was so busy with various things this fall that I didn’t feel the full impact of these changes, but I’m feeling them now. With the formidable germs that are on the loose this season, I’ve been keeping close to home, and no matter how many tasks I busy myself with, I’m feeling the emptiness of the house in a new way.

I was noticing last night that sometimes Lucas resists changes, too. Our treadmill is broken and Jaime and I were discussing what we might do if it can’t be fixed. Lucas told us that he was sad to think that we might have to get a different one, and hoped we could find the exact same one because he loves it so much. (That makes one of us that loves the treadmill!) It made me smile. I mean, Lucas obviously never uses it, but somehow he feels attached to it and doesn’t want to see it go. Maybe all those hours he spent down there in the basement with me while I walked or jogged on it are stuck in his memory. Maybe part of him doesn’t want to see those days over and done with either.

It’s hard to let go of the past sometimes. I longed for more freedom in the most intense years of Lucas’s early life, but now it almost feels as though I have too much. I’m not quite sure where to go from here. The abruptness of the change has left me feeling a little lost.

It’s comforting to know that God’s promises never change. Even as I’m adjusting to a different set of circumstances, I know that God has a purpose and a plan for me. James 1:17 says, “Every good and perfect gift is from above,¬†coming down from the Father of the heavenly lights,¬†who does not change¬†like shifting shadows.” We put the first part of that verse on Lucas’s birth announcement.

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Lucas was and is God’s perfect gift to us, and whatever God has in mind for me now that Lucas’s demands are lessening, that will be a perfect gift too. My job is to continue to trust God in the face of these changes. It doesn’t take me long to get anxious and fearful once I start trying to figure out my future. Peace comes from leaving it in God’s hands and knowing that he will provide for me no matter what comes, or doesn’t come. He will never leave me, and he will give strength for each new task. His plans are for good and not for evil, and he has promised me a hope and a future. Those wonderful promises are even more comforting than my morning coffee. ūüôā

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photo by Jess Marie Photography.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. ~Romans 15:13

 

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Kindergarten

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Lucas started Kindergarten on September 5th. It’s hard to believe he’s been in school nearly four months already. Overall it is going great! It’s a long day, but he’s handling it and is happy to go each morning. Here’s a few things we’ve learned about Kindergarten from our observations and conversations with our big guy:

  • Lucas’s favorite “subject” is recess. No surprise there! Is there any other answer for an elementary-aged boy? If so, I’ve never heard it.
  • Lucas is popular with the ladies. He regularly comes home with hearts and cards and pictures from various admirers. I know my days are numbered, but for now, I’m happy to report that I’m still his best girl.
  • Kindergarten is pretty academic nowadays. Lucas’s backpack is filled various worksheets he’s completed and he is reading and writing and doing all sorts of things that weren’t on my radar in Kindergarten. He seems developmentally ready for what they’re asking him to do, so that’s great! However, I get just as frustrated as he does when they miss recess because they’re busy with academics. I can always tell if he’s had recess or not when he gets home from school based on his mood.
  • Lucas takes what he learns in school and puts it to good use at home. They recently had an engineering unit at school. When he and Jaime were experiencing some technical difficulties with snow bricks cracking and breaking while they were building a snow fort, Lucas assumed the role of teacher including a written message to all the “engineers” in the house, listing the problem that needed to be solved. Lucas’s solution was to figure out how Superman used his heat vision to seal the cracks in the Daily Planet building after a villain attack and use that technology to seal the cracks in our snow fort. We’re still working on it.
  • Along with learning things at school, he’s trying to teach his classmates a thing or two. He came home in early December, horrified that none of the kids in his class realized it was still fall and that winter didn’t start until December 21. He told them but no one believed him. I heard him have the exact same conversation with our 10-year-old neighbor. When she disagreed with his pronouncement, he pulled out the calendar. I have to admit it was fun listening to her try to explain away the words “Winter Begins” written in bold, black letters on the 21st. I mentioned that his classmates were referring more to the winter weather and perhaps they didn’t pay as much attention to the actual dates of the winter solstice, but he dismissed my explanation and concluded that they just weren’t as smart as he is. We’re still working on the humility thing.
  • Every day after lunch recess, the class has quiet time when the kids can rest, read, or draw. Lucas chooses to draw every day and has gone through a few distinct “periods”.¬† The first several weeks of school he was drawing rainbows and cats.¬† Then he entered into a list making phase. Next he started drawing pictures of our family every day. Currently he’s been making cards for Jaime and me. These creations are the my favorite thing to find in his backpack! (Bonus points to anyone who can read the letter ūüôā )
  • Lucas seems to like his teacher, but this year he almost exclusively talks about the other kids. He’s more social and integrated than he was last year, and handles the inevitable moments of chaos a lot better than he did in the past. In general he seems much less anxious. Yay for growth!
  • Now that he’s in Kindergarten, there are several rules Jaime and I must abide by.¬† For example, the word “potty” is banned from our home since he’s not little anymore. He does NOT require hand holding to cross the street, no exceptions. We are not allowed to be around when he’s changing his clothes. He asks us to leave his room and shuts the door, or if he decides not to kick us out, he changes in the closet. If he requires any assistance in the bathroom he asks us to close his eyes. (It’s pretty hard to assist that way, but we do our best.)
  • Lucas really likes to be on time to school. I mean, really.¬† He has not been tardy even once nor has he missed any school so far.¬† Even though he did not inherit that trait from his father, Jaime deserves a lot of credit for getting him there each day! I deserve some, too. Lucas is such a late riser than it often takes all hands on deck to get him clothed, fed, groomed, and out the door on time. (Picture a pit crew).
  • Speaking of grooming, Lucas likes his hair smooth. He will not leave for school, be seen in public, nor admit anyone into our house until it has been slicked down. Apparently you can adore your father without approving of his hair choices.
  • Lucas knows several older kids at school that he’s met in our neighborhood or through soccer and he always says hi when he sees them at school. It’s one of the first things he reports on when he gets home. Knowing older students makes him feel like big stuff!
  • There must be a lot of music at school judging from the plethora of songs Lucas sings when he gets home. Lately it’s been a song about shapes and Jingle Bells. For the first few months, it was a version of Yankee Doodle which he sung incessantly with minor variations. Over break he started humming the Final Jeopardy theme which he informed us is the signal for quiet work time. I’m glad there’s lots of music involved in his schooling and that he still feels free to sing out whenever the mood strikes! I also wouldn’t cry if I never heard Yankee Doodle again.

I am very proud of Lucas for handling Kindergarten and the long school day so well.¬† It is a pleasure to watch him grow and mature and become more independent, even if it is a little bittersweet. I’ll never forget all those years when he stuck so close it felt like he was an extension of my own body. Somewhere along the journey he gained the confidence to be out there on his own. It’s good and I’m glad. We love our big Kindergarten boy!

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Photo by Jess Marie Photography

A Year in Review

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Look to the Lord and his strength, seek his face always. Remember the wonders he has done.

~I Chronicles 16:11-12a

Happy Holidays a little late! I’m sorry I’ve been absent from my blog for so long. Jaime told me I’d better get something published before people started to worry about me! My writing has gotten pushed to the back burner. It’s not as though life is busier than before, it’s just been different since school started in the fall. Somehow when my routines and responsibilities got rearranged, the blog got pushed out of the mix. I miss writing here, so stick with me. I’ll be back in 2018.

Last night Jaime and I were talking about the highlights and low points of 2017. I like reminiscing about the past year before I venture into the new one. It’s fun to remember and relive the happy times and good to note that we did, in fact, survive our challenges. And there were a few–Jaime had a really tough, busy stretch at work for the first few months. I had a rough summer health-wise and had to have both IV antibiotics as well as oral antibiotics and steroids during what are usually my healthiest months of the year. A bunch of my hair fell out (gotta love side effects). I lost some lung function. I had back problems and spent months in therapy. We had to cancel a trip to Chicago in the early spring because of the Jaime’s work situation and we missed a planned vacation to Tennessee in July due to my illness. I woke up with pink eye on Christmas Day (apparently I was on Santa’s naughty list) and I am on antibiotics now for a virus gone rogue. Those were some of the low points.

Ah, but the highlights! There were many more of those. The tooth fairy made two appearances here and one at Grandma’s which was a fun first for us and Lucas. Lucas played on his first two soccer teams with coach Dad, and so far has not broken anything¬† in spite of all the soccer balls he kicks and scoops and does who-knows-what-else with around the house. Jaime’s mom courageously fought cancer with surgery, chemo, and radiation and was given a clean bill of health. We participated in the Great Strides walk for CF in May and were showered with support. We had several gatherings with Jaime’s family and visits from my family. We traveled to West Michigan for beach time and reunions. Lucas, Jaime, and Grandpa Ventura took a trip to Washington D.C. to see Manchester United play. We went to Wild Kratts live and Detroit City FC games. We hung out with our friends. Lucas did great in Young Fives and he transitioned smoothly into Kindergarten.

I realize at this point I might be overdoing it, but I hope you’ll allow me to share a few more highlights. ūüôā

Lucas helped me brush up on my geography skills and he learned to ride a two-wheeled pedal bike. There were ten new deer signs installed within a few miles of our home which was mega exciting for our resident six-year-old. We did some nice landscaping in our backyard and my garden was extra beautiful. I had a healthy fall and even got through my first virus in November without needing antibiotics.¬† My back issues improved and I was able to start jogging again. I got to go on two field trips with Lucas and his classmates and Jaime went to two in-class parties. We both got to see him read a self-authored book to his class about what he was thankful for, and we both made it onto the book. Lucas got interested in Legos and I’m living vicariously through him as they were not marketed to girls back in my day. (I didn’t know what I was missing.)

We laughed a lot this year and experienced much joy. We cried a bit too, and faced some tough disappointments. But our consensus is that we have a really great life and we’re extremely thankful to God for all the blessings and the challenges and the various facets that make it ours. God has always been faithful to us and we know that will never change.

And so we look forward to whatever 2018 will bring.¬† Jaime and I will both turn 40 which is shocking (and somewhat disturbing). It’s quite a milestone from cystic fibrosis perspective though, so I think we’ll celebrate rather than mourn (any black balloons that show up on my doorstep will be immediately popped). I’m sure there will be more soccer and Legos and more visits from the tooth fairy. There will be good times with family and friends.¬†There will be struggles.¬†I always feel some nervousness as I look out toward the future, wondering what is coming my way. I can’t quite see how certain things in my life are going to work out. But it’s not my job to know. I don’t need to be afraid because God has promised never to leave me, always to help and strengthen me, and He’s promised to finish the work He has begun in me. And so with a nod toward last year’s challenges and a heart brimming with thankfulness for the blessings, we’re stepping forward into a new year.

May your new year be full of blessings, may you know God’s love, and may you take hold of His strength during the tough times.

Happy New Year from our family to yours!

Give thanks to the Lord for he is good, his love endures forever.

~I Chronicles 16:34

Odds & Ends & an Update

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Last month passed quickly, and without any posts from me! I thought that once Lucas was in school all day I’d be sitting on the couch twiddling my thumbs, but somehow that has not been the case. The days have flown by with almost no couch-sitting. I am settling into my new routine. I have a new work schedule which I’m getting used to. I definitely have more kid-free time than I have had for the past six years, but between physical therapy appointments for my back, other health maintenance activities and appointments, work, and running the household, I’ve not been bored. I’ve enjoyed finishing a few projects that have been half-done since Lucas was born, like his baby book! I’m sorry to say he will never know certain pieces of information (like when his last two molars came in) due to my negligence in recording the information at the time, but I’m pretty sure he’ll continue to live and thrive not knowing.¬† Thankfully!

One lesson I’m learning in these first weeks of having more time is that my productivity addiction is alive and well. I have been unable to be super productive since Lucas was born–in part because of the demands of caring for a young child, and in part because of the progression of my disease and the resulting loss of energy. I am one of those people who tends to put productivity on a pedestal, perhaps because deep down, my self-worth is too wrapped up in what I can or can’t do.¬† Clearly it’s something I need to continue to work on. There have been days recently when rather than relaxing, resting or enjoying some quiet, I’m wondering what else I can get crossed off my list. It feels good to get to the end of the day and be able to point to ten things that I accomplished. But just because I can get more things done daily, doesn’t mean I should wear myself out doing so. Being more restful affords me energy and an uncluttered mind to be fully present for the limited time I get to spend with Lucas once he gets home. Note to self: that is more important than any number of completed tasks. What can I say, I’m a work in progress!

I have been spending some time exercising and getting steps each day, but I did break my 10,000 or more steps a day Fitbit streak in early September. The streak lasted for 410 days, so it was a little sad to let it go, but it was the right choice. I broke it on Labor Day weekend. We were with my family for a reunion and I simply didn’t have the energy for both our planned activites and my 10,000 steps. When I mentioned to my dad that I would be breaking my streak, he reminded me that these goals that we set for ourselves only have value as long as they are serving us. The Fitbit streak did serve for me for a while! It helped me to become more active and build stamina. It kept me moving (and therefore healthier) during some emotinally challenging months. However, had I forced myself to get 10,000 steps that day, I would have been harming myself just to uphold the streak. That, my dad said, is serving the goal, and in doing that, it loses its value. Wise words, don’t you think? I don’t need to be a slave my goals. With that in mind, it was much easier to let it go.

Last week I headed back to the CF clinic for my three-month check up. After a rough summer, I was pretty nervous to see where my lung function had landed. It was 35%. That was definitely disappointing as I hoped to at least get back to 38% after all the treatments and therapies I went through this summer, but I wasn’t exactly surprised. In spite of that 35%, I have been feeling more stable this month and am hoping that there is still some healing taking place that will allow me to regain what has been lost. The good news is that my oxygen saturation was 99%, my heart rate and blood pressure were normal (in spite of doctor’s-office-induced anxiety!) and all other aspects of the exam were good too.¬† In other words, my body is doing a great job of coping with the low lung function. I’m exceedingly grateful for that!

Lucas and Jaime are doing well. I’ll write a separate post about Kindergarten soon, but for now I’ll tell you that Lucas is doing great handling the long day and he loves his classmates and his new school. We are so proud of him! He¬†has enough energy left over to play soccer, this season for a team comprised of kindergarteners and young fives from his school and coached by the best coach in the world (Jaime). ūüôā I just love watching those two together on the field and it’s fun to see how much confidence and skill Lucas has gained since the spring. My boy is growing up!

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Fighting for the ball!

At practice the other day, Lucas came to the sideline where I was watching and told me he was going to go back out on the field and score a goal, just for me. And he did! He was so excited and I felt honored. He’s been growing and changing so much lately and is relying on me less and less. His sweet words and actions sure help as I’m adjusting to these changes.

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Gooooooooooal!

All in all we are doing well! Life has its challenges but we are experiencing many wonderful blessings too. And there are always fresh reasons to hope.

Yet this I call to mind and therefore I have hope: because of the Lord’s great love, we are not consumed. For his compassions never fail. They are new every morning; great is your faithfulness. ~Lamentations 3:21-23

 

Sheri’s Answers

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A few weeks ago, Jaime, Lucas and I left for our annual beach weekend in western Michigan. We started this tradition when Lucas was three and now it’s something we all look forward to. We’re fortunate that my parents live just a little more than a half hour from Lake Michigan so we have the most wonderful place to stay!

This year we left in the early afternoon on Friday and drove straight to the beach. I figured we would have a few hours of sunlight left to enjoy the sand and watch the waves. It had been cold and windy earlier in the day so we knew we wouldn’t be able to swim but the air was fresh and the water and sky were so beautiful.

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It was only a short time before the park emptied out, and finally, we were the only three left on the beach. “Mommy, I just love watching the waves,” Lucas told me as he snuggled on my lap. Me too. It was wonderful.

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As I gazed at the expanse of the lake, it struck me how peaceful it was on the beach. It wasn’t quiet–the waves were choppy and rough and they crashed forcefully onto the shore. Seagulls were squawking and scuffling. ¬†But still it was peaceful, natural, lovely. A gentle breeze danced around us and I found myself breathing deeply of air that felt clean and pure. I could practically feel my heart disarm, setting aside its indignant complaints and surrendering to God’s peace. Peace amidst¬†the turbulence.

The words of the old hymn, Be Still My Soul, came into my mind, and I was transported back, again, to the summer when Sheri was dying. That hymn was meaningful to our family around that time. I quoted from it in a letter I wrote to Sheri just before she died. I posted it on my refrigerator as a way to be strengthened in my grief. My sister Julie wrote a beautiful piece incorporating its words on the first anniversary of Sheri’s death. Sheri died on September 4, 2004–thirteen years ago, today. It’s so hard to believe she’s been gone that long. I miss her so much.

I think of Sheri all the time, perhaps even more now that I find myself wrestling so much with the effects of this disease. I often wonder what advice she might have for me. Her faith in God sustained her, this I know. I saw it with my own eyes. But would she have specific suggestions for me? Would she attempt to answer the unanswerable questions? She fought through a seemingly endless string of challenges in her life without bitterness, and left a mark on this world that no one who knew her would deny. She was so faithful and so incredibly strong. But I know it was hard. She told me it was hard and I saw her struggle. I imagine that sometimes, when the house was quiet and the night was dark, she too felt overwhelmed by the burden of the fight and surrendered to the tears. Knowing that makes me feel close to her, even though 13 years have passed since I’ve talked to her and touched her. ¬†Sometimes I just go ahead and ask her the questions. I don’t know if she can hear me, and I know for sure I won’t hear an audible reply, but sometimes just giving voice to them brings me comfort.

Sheri trusted God. She had hope, she had confidence in His goodness and love, and she knew God was in control. She knew He would give her the strength she needed to live and love fully until the day He took her home. And He did. There were good days, great days! Days filled with joy and hope and love. She touched so many lives and accomplished so much in her 35+ years here on earth. There were bad days full of hospitals and doctors, medicines, loss, and pain. Some days were downright ugly and filled with darkness and despair. But the beauty of her spirit is what we remember most of all–how hard she fought, how victorious she was, how strong, how loving, how generous. We remember those things because she refused to be defined by the disease that plagued her. At times cystic fibrosis ruled her body but she staunchly refused to allow it to break her spirit. Her husband Pete once told me that rather than allowing CF to define her, Sheri defined CF. Cystic Fibrosis on Sheri’s terms.

As the lyrics of the hymn scrolled through my mind that evening on the beach, I began to think that the words contained some of the answers she might give me, answers to the questions of how to weather the losses and disappointments, how to face my fears, how to resist bitterness and choose thankfulness and joy even when I feel battered and bruised. “Be still my soul” is a good start.

“Be Still, My Soul”
by Catharina von Schlegel, 1752
Translated by Jane Borthwick, 1855

Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

Be still, my soul, though dearest friends depart
And all is darkened in the vale of tears;
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrows and thy fears.
Be still, my soul; thy Jesus can repay
From His own fulness all He takes away.

Be still, my soul; the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul; when change and tears are past,
All safe and blessed we shall meet at last.

I love you so much, Sheri. Thanks for loving me. Thank you for being a great example, leaving for us a legacy that continues to guide and inspire our journeys of life and faith. I’m so grateful for the 26 years I had with you, and that I’ll see you again, when the vale of tears is lifted and love’s purest joys are restored. Until then, you will remain forever part of the fabric of my being, my dear and beloved big sister.

Sheri

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

 

 

Six Years Old

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Happy Birthday to our sweet boy Lucas! I have to say, I loved five. What a great age it was and what a nice year we had! Lucas has changed so much over the past year. I suppose that happens every year, but at age six, he seems so much older and more mature than he did a ¬†year ago. That’s not to say he still isn’t unreasonable at times, and he’s definitely still stubborn, but he’s taking many steps towards being more flexible and more independent. *Happy sigh.

I peeked back to the last few years’ birthday posts to read what Lucas was up to at those times, and it seems as he gets older, his interests are staying more consistent. There’s more crossover from last year than any other year, but of course he’s into new things too. ¬†Every child is special and unique, and here’s some of what makes our little boy tick!

  • Lucas favorites:
    • Color: ORANGE!¬†
    • Food: a three-way tie between grilled cheese sandwiches, chicken quesadillas, and tacos
    • Animal: cats and chickens
    • Book: The Scrambled States of America by Laurie Keller
    • Movie: Inside Out
    • TV Show: Wild Kratts
    • Sport: soccer
    • Song: Time by the Black Lips

 

  • Deer signs. Oh, deer signs. Lucas’s infatuation with deer crossing signs was just getting started a year ago and now it’s turned into a full-fledge adoration. He used to just like to see the four deer signs that are within a mile of our house, but now we actually go on deer sign hunts where we drive around remote places looking for more. He called them “Deer Sign Adventures.” The record is 16 deer signs in one adventure. He knows where each deer sign he’s ever seen is located and can show you on a map.
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We have deer signs at home too, because as you can see, we have problems with deer in these parts.

  • Speaking of maps, he loves maps and roads and has an impressive internal compass. One of his favorite apps on the iPad is the maps app where he can look at all the roads in the city where we live to see how we get places and zoom out to figure out various routes to further destinations. Sometimes while we’re he’ll ask me randomly, “Mommy, why are we going south?” True confession, if it weren’t for the compass on my dashboard, I wouldn’t know if he was right or wrong half the time. (He’s almost always right). When Aunt Julie was here, he successfully guided her to his favorite bakery two cities over with the proper road names and directions. When Aunt Tina was dropping him off at home and ran into construction, he decided the marked detour was a bad idea and gave her directions to get around it a different way. He regularly draws maps of our neighborhood. He builds road systems on the floor complete with street signs. Even the grout lines in our entryway are roads, sometimes with construction, so watch where you step.
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There was a baaaad traffic jam in the city on this day!

  • A new hobby for Lucas this year is geography. He spent many months poring over our globe learning the continents and various countries. For a while he really wanted to take a trip to China and was convinced we were headed there any day now. I got the book¬†The Scrambled States of America¬†by Laurie Keller which then shifted his attention more to the U.S. He knows the names and shapes all 50 states. He is constantly noticing things that remind him of one state or another. He told me last week that our backyard is shaped like Nevada and he was delighted to discover he had a potato chip that looked just like Vermont! His favorite states are Minnesota, California, Tennessee and of course Michigan.
  • Lucas has also gotten into calendars and dates this year. He paged through and learned the months and figured out how the days and dates work. He stole my calendar and wrote all his farm animals’ birthdays on it. He has a great memory for what he considers important dates. The other day when we were talking about how much he had loved his Young Fives class, he reminded me that he had one bad day, on May 19th. He also remembers that his buddy Greyson came with me to pick him up from school. “Remember Mommy? On April 26?”
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Adding “Friendly’s” birthday to the calendar

  • Soccer is a huge love in Lucas’s life right now. He played on his first team this past spring.

We have been playing all summer in the house and in the yard. He also loves watching soccer on TV with his dad and even got to go to Maryland with his dad and grandpa in July to see his favorite team, Manchester United!

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He also loves Detroit City FC and went to most of their games this season–mostly with Jaime but sometimes with me and once with his best friend, Elliot. When we play soccer at home he pretends to be his favorite player from Detroit City, #32, Elijah Rice.

  • Lucas still has a great imagination and it’s so fun to hear him playing! He still loves to play with his farm, although more often than not, he’s conducting a soccer game at the farm with his animals these days. The teams that most often face off are Manchester Barnyard and Chelnsea (don’t forget to pronounce the “n” because this is obviously a different team than Chelsea!) He sings all the songs and does all the chants he knows from the Detroit City games. He also sings the national anthem…or something resembling it with lots of mumbling and confusing phrases like, “as the twilight lost beaning.” When I suggested to him that I could teach him the actual words, he informed me that this was a different song that they sing in pretend life.
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Manchester Barnyard vs. Chelnsea!

His imagination extends beyond farms and soccer too. He constructed a pretty elaborate “Headquarters” from the movie Inside Out and puts on different “movies” he makes up with those characters for my viewing pleasure.

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Headquarters complete with the console, memory spheres, emotions, and mind manuals.

He still likes to sing and has taken to using a Ziploc bag top as a “progress bar” so we know how much longer we have in the song.

He finds creative ways to act out his favorite stories.

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Acting out the scrambled part of Scrambled States

I love all these things that make Lucas the special little boy he is! But my favorite is still all the affectionate hugs, kisses, and I love yous.

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Happy, happy birthday Little One. We love you a billion.

 

 

Keeping Hope Alive

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As Jaime recently mentioned, our summer has been great overall! He’s a summer enthusiast, I’m a summer enthusiast, and Lucas has followed in our footsteps to adopt summer as his favorite season as well. We’ve enjoyed days at the pool, time in our garden, park trips, games, lots of soccer, visits with family, art projects and bike rides. If you ask Lucas, though, he’ll tell you that his favorite part of summer is sleeping in as long as he wants. I didn’t realize those attitudes started at the young age of five but I’d have to agree, sleeping in is the best!

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A pool date and ice cream with cousins! Well, ice cream for the cousins and a banana for Lucas.

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Playing soccer in the sprinkler.

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Perler bead art project meets Lucas’s love of deer signs!

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Scrambled States game with more cousins!

Jaime also reported that I had been back to the doctor after finishing my round of IVs and was relieved to see that my lung function had come back up to 38%.¬†When I first began the IVs I wasn’t sure what to expect. When I was on them two years ago I went from feeling a little sick to feeling horrible within the first week. This time, however, I felt much stronger and more stable throughout. Relief flooded in when I felt my breathing ease and I knew I was headed back up towards that 38%. Then I started to hope for more. I thought maybe I could surge up into the 40s again which would give me a little more cushion in case my lung function settled. During antibiotic treatments, my lungs are healthier than usual due to reduced congestion levels and less inflammation. It’s not uncommon for my lung function to drop a few points after I’m off the medications, once my chronic levels of bacteria return with their accompanying symptoms.

I made slow and steady progress in the first two weeks of my IVs, but into the third I felt myself plateau.¬†It’s okay,¬†I assured myself, at least you’re back to baseline.¬† I remember telling my sister that I almost wished I hadn’t hoped for the 40s because it looked like it wasn’t going to happen. It’s tiring being a hopeful person sometimes. Allowing yourself to hope means opening to the door to disappointment. Hopes that aren’t realized lead either to despair or require me to readjust my expectations.

I decided to readjusting my expectations was the way to go. Having done so, I was relieved, even excited to blow the 38%.¬†The rest of the appointment went well too–my blood oxygen saturation, blood pressure, temperature and pulse were all normal. My lungs sounded clear and my heart sounded healthy. ¬†The only thing that gave me pause was my doctor’s confession that he would feel more comfortable once I strung together six months of stability and we saw that the 38% was sticking.

I wanted to feel joy about the 38% and satisfaction for how hard I worked to see that number again, and I did, at least for a time. But after a few days, I began to feel the weight of his comment. I know where he’s coming from. What happened to me–a sudden and not-easily-explained eight point drop in lung function is not a good thing. He has treated hundreds of CF patients over the course of his career. ¬†He certainly knows that lung function can slip down after a course of treatment. He knows from experience that as baseline lung function drops, patients are more likely to have frequent infections and health becomes more difficult to maintain. He’s a compassionate and caring man but he never sugar coats the truth.

And so a few days after the appointment I felt myself sliding into a place of grief. I felt sad that somehow I have gotten to this place of 38%. ¬†I grieved the fact that I was even temporarily pleased with it. Wasn’t it just yesterday I was struggling because I had dipped into the high 40s? And not so long before that I was stuck in the upper 50s, straining with every fiber of my being to get back into the 60s? The honest truth is, I am sick and tired of readjusting my expectations.

With these unhappy thoughts coursing through my mind, I entered the adjustment phase–the span of time that my CF symptoms spike up as my body gets used to life without the help of antibiotics. ¬†This means hours of coughing each morning and again in the evening, back pain, headaches, and poor nights of sleep. It’s about as enjoyable as it sounds. I began to feel certain that I would work and strive and do everything in my power to maintain that 38% and that it wouldn’t be enough, and my lung function would slip down to a new, lower normal. Sometimes it’s hard to hold onto hope when you’re so frequently disappointed, and feeling awful doesn’t help either.

Alexander Solzhenitsyn, who spent years in a Soviet work camp (and therefore knew a lot about despair) said, “All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope.” Why is hope so important? We know from medical studies that hope itself has a healing power. Hope causes the placebo effect–where patients show improvements just because they believe they are taking a medication that will help them. Hope is such a strong influence that many drug studies are done double-blind so that the patients aren’t influenced by the unconsciously communicated hope of the researcher. There are studies that show that patients who have an attitude of hope experience much better outcomes than patients who feel defeated or depressed, and true hopelessness can even result in death.

Hope is an essential part of a healthy soul. When I’m hopeful I believe that there are good things ahead and that my life is worth fighting for. ¬†It keeps me from giving up. I do get tired of readjusting my expectations. I weather plenty of disappointments in my life with cystic fibrosis. It’s hard that with a progressive disease, what I’m hoping for feels like “less” over time. Just two years ago I was hoping for 50% lung function. Now I’m hoping for 40%. Or even 38%. The numbers are less, but what is behind them is really the same. I want the health and strength to live a full and meaningful life.

The “small” hopes–hopes to recover from illness, hopes for a higher lung function, hopes for a better day tomorrow–they are important. If I didn’t wish for those things, if I didn’t think they were possible, I wouldn’t fight nearly so hard for them. ¬†Sometimes they lead to disappointment. But better to hope and be disappointed than to live in darkness and despair.

I have other hopes too, ones that don’t require any adjusted expectations. I have the hope that God will transform and redeem my pain and bring wonderful good out of it–for me and for others. I believe that the ugliness and pain of this disease is only temporary but that the good God brings from it will be eternal. I don’t know all the ways God has redeemed my suffering but I have witnessed some things. I have seen my faith become stronger and deeper. I have been drawn and into a closer relationship with God and with others because of my dependency. I have struggled but I have also experienced victories. I have been knocked down but I have also overcome. The joys would not be so sweet without the hurts nor the victories so gratifying without the struggles. I know the eternal glories that await me when this life is through will far outweigh any loss I have sustained. I know God is using this disease for my good. I have built my life on that hope.

And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.

We wait in hope for the Lord;
    he is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
May your unfailing love be with us, Lord,
    even as we put our hope in you. 

Psalm 33:20-22

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