Another 20-Year Anniversary

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The year 1996 was a big year for me. It was the year Jaime and I started dating. It was the year I graduated from high school. After graduation, I turned 18. In the fall I headed off to college. There were lots of milestones!

There was another big event for me in August of that year. The first weekend, I went to meet the girl who was to be my roommate for my Freshman and Sophomore years of college.  I remember having a stomach ache on Sunday that weekend. Thursday of that week that I wrote in my journal about abdominal pain and fevers. Friday morning I had an allergy appointment and my mom took me even though I was ill, feeling that perhaps the allergist could shed some light on my condition given her medical background and expertise. Once we got there she began examining me and when she touched my abdomen, pain surged through me. I shot up off the table, surprising all three of us. She knew right then it was probably my appendix and rushed me across the hall to where my physician had his offices. Within a few hours I was in surgery.

These days, appendectomies are often done laproscopically, but 20 years ago, we weren’t even presented with that option. We were hopeful, however, that the procedure would be routine and I would be out of the hospital after a few days. That was not meant to be. Once I was in surgery, they found that my appendix was hugely swollen and had perforated. Infection had spilled out into my abdomen and infection and scar tissue were clinging to my large and small intestine. They had to remove portions of both intestines as well as the appendix.

At the time, it was also determined I had a mild case of bronchitis. Out of concern for my lungs, the doctors decided it was best not to put me fully under for the surgery. The exact details are fuzzy in my mind, so I turned to my journal to fill in the details. There I reported that they gave me a spinal injection but I was partially aware during the surgery. Apparently I was lashing out and hitting at the doctors and nurses. They gave me a shot after the surgery to help me to forget. I did forget the surgery itself but had nightmares for months after the procedure as my subconscious tried to wrestle with the horror I had been through. (Side note: if you hit medical personnel during surgery, however justifiably, they will label you “combative” and that term will follow you around for the rest of your life!)

The first memory I have post-surgery is being wheeled from the elevator into my room. I thought I was screaming and writhing in pain, but was told later that I was in fact deathly still and softly moaning. I wanted to die. I had never, ever felt such a degree of pain and misery and it seemed unbearable. My second memory is of my parents and two of my sisters arriving at my room with a big bunch of balloons. I remember the shocked looks on their faces when they saw me. I remember my mom rushing to my side, and the others leaving immediately. The next two weeks were the most difficult of my life up to that point. I was discharged from the hospital after several days only to be readmitted due to uncontrolled pain and swelling. The infection took a long time to get under control. I became undernourished and unable to eat. Weight melted from my frame. The surgeon, skilled but callous, implied that I was anorexic because I wouldn’t (couldn’t!) eat. He also blamed me for the seriousness of my condition, deciding I must have withheld information from my parents about how I was feeling. He didn’t take into consideration that CFers have stomach pain routinely which makes it seem normal and also builds a pain tolerance that is perhaps higher than average. The staff seemed annoyed and threatening when I pulled my NG tube out in my sleep on the second night. Nothing was going right. It was an awful experience.

There were good things that happened too–Jaime came to visit me and brought me a cheerful stuffed Tigger. My sisters and dad came to visit regularly. My aunt and grandfather came. People sent flowers and little gifts to cheer me up. And my long-suffering mother stayed by my side most of the time, fielded phone calls from me in the middle of the night when I was despairing, and read to me to help pass the time. One day she read these verses from 2 Corinthians 1:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. (v. 3-5)

Those verses meant a lot to me during those weeks and the time of recovery that followed. It was the first time in my life that I was in real trouble. I was dealing with an infection serious enough to cost me my life. I was being cared for by a surgeon who was unkind and unfair. I was due to leave for college and didn’t know if I’d be strong enough to go. The future felt uncertain. And yet I felt God’s comfort deeply, perhaps for the first time. I found joy in knowing that this comfort I had received could be used to help someone else. It was the first time I personally grappled with the notion of redemption–that God could take a painful and ugly experience in my life and bring good from it. And He did bring forth many good things. I felt forever marked by God’s love and care for me during those days. I learned that life is indeed uncertain and disaster can strike at any time, but that God is a sure and steady anchor and can see us through any storm. I had a new understanding of what real pain was which made me appreciate all the more Christ’s sacrifice for me on the cross. My faith was deepened. I understood a little more about how much my sister Sheri had suffered with her CF and I felt compassion and respect for her.

I also had new eyes through which to see the pain and suffering around me, and once I got to college just weeks later, I found that hurt was rampant in people’s lives. I had friends who were scarred by abusive pasts, friends who were struggling with depression, and those simply looking for acceptance and love from a cold, hard world. I found I could relate to them a little better, and I felt deep sadness for the wounds that were ongoing, unable to be fully healed by the passage of time.

Although I thought my wounds were fully healed, years later, we discovered that this surgery was a big player in the infertility I was experiencing. In an exploratory procedure, our reproductive specialist discovered that my abdomen was full of scar tissue from the appendectomy and was it creating a mess of things. And unbeknownst to us, one of my fallopian tubes had been removed and tied off, a detail the surgeon failed to mention back in 1996. While the infertility was painful and difficult, it was another formative time in my life where I learned to trust God and accept His plan for me. In a spectacular show of redemption, Lucas was born on August 9, 2011–the 15th anniversary of that dreadful surgery. His birth on that day reminded me that our hurts do not go unnoticed by God. He sees, He knows, and if we allow Him to, He works all things together for our good, no exceptions. What a miracle.

That experience 20 years ago marked my transition from childhood into adulthood. It was a time of major growth for me. It was also the first of several times where I was in real danger and God preserved and protected my life. After that I knew without a doubt that He had a plan and a purpose for me. I knew that my life wouldn’t be perfect–couldn’t be perfect in a world so marked by pain and suffering. But I also knew that He would be my faithful guide and companion, and that He would provide whatever I needed. And He has. Great is His faithfulness.

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Five Years Old

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Five years old. I’ll just give you a moment to let that sink in. Okay, maybe I’m the only one who needs a moment. But honestly, the last five years have passed at lightening speed! Four was a great age, and I’m guessing five will be equally wonderful. So while I feel a little sad, I’m excited for what’s next too.  Here are some things that make Lucas the wonderful and unique little guy he is at age five:

  • Lucas wants to be a farmer when he grows up. He loves farms and we visit our local petting farm weekly. He calls himself Farmer Lucas when he helps me harvest vegetables from our garden. He spends many hours a week playing with his toy farm and has slowly added onto it using popsicle stick structures and cardboard boxes to get it to closely resemble our local farm. His absolute favorite farm animals are chickens! He does an amazingly accurate imitation of both a hen and a rooster. He crows like a rooster whenever he sees that Jaime has fallen asleep on the couch, which is a very effective tool for rousing him.
  • Lucas’s other great love is soccer, much to his father’s delight. He went to nearly every Detroit City FC soccer game with Jaime this season and learned all the songs and chants. He also loves watching soccer on TV. His favorite team is Manchester United (which he calls the red team) and his favorite player is Maroune Fellaini whom he also calls Crazy Hair. Lucas watches the live and televised games very closely and imitates what he sees in our backyard. He doesn’t call it the backyard however–it’s simply “The Field.” He got his first real pair of soccer shoes a few weeks back and now wears them every time we play.
  • Lucas is very creative in his play. He found a way to combine his two favorites and built a soccer field in his barnyard complete with a sideline and bench. The animals face off at least once a day. The star player is Henny. He likes me to sit in the “stands” and sing all the songs from the Detroit City games over and over (and over) while the animals play. Apparently it is against stadium rules to lay down during the game, stretch, yawn, or otherwise appear any less than 100% engaged at all times. After the game the animals talk to their coach in a huddle before they line up to shake hands.
  • Lucas has three favorite bedtime stories presently: The Mitten by Jan Brett, The Mitten by Alvin Tresselt, and The Hat by Jan Brett. He told us one day that he wanted to read the stories and we were shocked when he recited all three, word for word while turning the pages at the proper times. After memorizing the stories he put them to good use by finding a large mitten (which was mine once upon a time) and repurposing it as his toy mitten to act out the story with his animals. In Tresselt’s version of the story, the mitten rips apart and sadly, the seams have popped on my pair too after hours of being stuffed with a menagerie of plastic animals. Ah well, it was worth it for the hours of happy play.
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The Mitten!

  • Lucas is still very affectionate and loving.  He tells us multiple times a day that he loves us and likes us. He gives us lots of hugs and kisses. Every day he asks Jaime, “How was work today, Daddy? What did you do?” and similarly he’ll ask me, “How was tutoring, Mommy?” followed by a relevant question such as, “Did [insert student’s name] wonder where I was?” or “Did you see [insert student’s name] today?” It makes us feel special that he asks. I don’t know why, it just does.
  • Lucas knows all the names of the roads near our house and likes to give us detailed (and accurate) directions before we head out. He has two favorite roads, favored because they both have deer signs which he loves. He even knows the name of the service drive that connects them. He has conceptually figured out how the roads and highways near us line up which has surprised and impressed me on more than one occasion. “If you keep going on this road, Mommy, you’ll cross over the highway and end up at the farm!”
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Deer sign!

  • He still loves orange. All orange, all the time. He also still loves singing, and breaks into song often. He’s taken to asking us, “Who wants a song?” and then serenades us with a song of his choice. Most recently, he’s deviated from children’s music and asks to listen to Jaime’s music and my music while riding in the car. While I have edified him with wholesome selections, Jaime has learned the hard way that Lucas memorizes lyrics quite quickly, so it’s a good idea to know yourself what they actually say. I’ve had to do a little damage control. “Silly Lucas, not drugs, bugs.” Jaime is grounded until further notice.

I could go on, but suffice it to say, we love our boy immensely and have greatly enjoyed watching him grow from that teeny baby to our big five-year-old.

Happy Birthday Sweet Boy. We love you so much!

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Conversations with Lucas, Part Four

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We love this silly boy and are so thankful for him and for all the joy he brings to our lives. He loves to laugh and he sure makes us laugh! Sometimes he does it on purpose by telling jokes or repeating things he noticed we found funny in the past. Sometimes it’s just the combination of his sweet face, his little voice, and the way his mind works that has us in stitches.  Here are a few of our recent conversations. We hope they make you laugh too!

B: Who is going to go first?

L: I know! “Eenie, meanie, miney, mo, kitchen tiger by its toe.”

B: Kitchen tiger?

L: Yeah. You go first Mommy.

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L: Mommy, can we have quesadillas for dinner?

B: Well, it’s Father’s Day so we’ll let Daddy pick what he wants for dinner.

L:  Okay.  But when is it Kid’s Day?

*

L: Mommy, when is Daddy going to be home?

B: He’s on his way.

L: I want him to be home now!

B: Okay, well, if you count to 100, then he will be home.

L: Okay!  10, 20, 30…

B: Hey!

*

L: Mommy, will you make my lunch now?

B: Sure, but let me lay down for two minutes, I’m tired.

L: But I’m not tired!

B: That’s because you’re a strong, young boy and I’m an old lady.

L: You’re a mom, not a lady.

*

L: Mommy! Come see my farm! But you have to call first to see if it’s open.

B: Okay…ring ring…

L: Hello?

B: Hi, I was wondering if the farm was open so I could come and see the animals?

L: I’m sorry, you have the wrong number. This is the doctor’s office.

*

[At lunch time…]

B: Hey, there’s a family of lions on my chair, I can’t sit down!

L: It’s okay, Mommy.

B: It’s okay to move them?

L: No, you can eat somewhere else. Or you can stand.

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L: I don’t want to!

B: I know you don’t, but sometimes you just have to obey Mommy and Daddy. It’s hard when it’s something you don’t like, but Mommy and Daddy have to obey too.  We have to obey God.

L: But who has to obey kids?

*

L: Mommy, soccer players fall a lot.

B: That’s true, sometimes they trip or bonk into each other.

L: Yeah, you fall a lot in soccer but you don’t fall in golf. Only if you’re wearing the wrong pants.

*

L: Daddy, Mommy and I have been talking.

J: Yeah?

L: Yeah. You are really forgetful, but we love you anyway.

*

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Thanks for all the laughs, little one. We love you.

Operation Lace Up: An Update

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I’m a bit overdue for an exercise update so I thought I’d better get my act (and a post) together! On June 13th, I restarted a modified Couch to 5K program in an attempt to get myself back into shape after a winter full of illness. (You can read that post here if you missed it). My doctor warned me it would be difficult given what my body had been through this past winter, and he was right.  The first week was a breeze. I only had to run one minute at a time and that was completely doable.  The second week was a bit harder, but not too bad with 90-second running stretches. The third week felt impossible.  I had to run three-minute stretches and for some reason, they were killing me. I would barely make it to the end of the three minutes and when I did, I practically had to stop moving altogether in order to recover. I thought there was no way on earth I’d ever be able to progress to week four which included five minutes of running. It felt much harder than the other two times I’ve gone through the program. I wondered if my running days were over. Then, surprisingly, the next week I was able to do the workout with the five-minute stretches.  And it felt decent! I’m not sure what changed in my body between those two weeks, but I’m grateful it did!

The day of last workout of week four, I was trying to squeeze in a run before a playdate. Due to a series of unfortunate events, we were running late and I needed to get through the run as fast as I could. With that in mind, I decided to run continuously for as long as I could, and I made it a mile and a half! I knew then that I could do the two miles without stopping so I ditched the program, and my next workout ran my two miles.  It was July 13th, exactly one month after beginning the program.  Yay!

I completed the run in 26:38 which is a bit slower than I’d like, so my next goal is to decrease my time to 25 minutes. Since this past week I’ve run at 4.5 mph, my plan is to up that to 4.6 this week, 4.7 next, and hopefully the first week of August, I’ll hit my goal of 4.8 mph which is two miles in 25 minutes.

It’s always discouraging to have health setbacks which require me to start over with my exercise goals. My life with cystic fibrosis will never afford me the opportunity to maintain my health and fitness indefinitely. I know this, yet every time I deal with extended illnesses that hurl me back to a place of weakness, it feels like my hard work has gone down the drain. In reality, that’s not true. The exercise itself is important for my health, but no more important than the ability to show resilience and steadfastness in the face of setbacks–to be able get back up and keep trying. In that sense, my efforts are never wasted, no matter how many times I have to start back at square one. And as an added bonus, working hard and achieving a goal feels great.  Every. Single. Time.

A Clean Window Perspective

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I love summer. It’s my favorite season.  I could do without the humidity, but I love being outside, I feel at my healthiest in the summer, and I love the plethora of activities that warm weather offers.

As you may have read before, I am also one of those weirdos who actually likes yard work, and there’s plenty of that around during this season. In spite of my lung-limiting CF, I enjoy the physical aspect of working outside and I love how a little elbow grease can transform a space in a relatively short period of time. Last year Lucas got me back into gardening and I have enjoyed having flowers to care for again, and now a few vegetable patches and pots too.

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My flowers are gorgeous this year!

Last weekend, my parents came for a visit and my dad helped me get a few of the outside windows cleaned up. There were some big messes that I couldn’t reach due to our friend Bondo Bird and his springtime attempts to break into our bedrooms. My mom was remarking how clean windows can make such a big difference on outlook. Suddenly the world seems bright and clean and full of possibility. I blame those clean windows and my fresh, new outlook on what happened next.

After my parents left, Jaime and I were admiring the sparkling glass when I began to see more clearly what an eyesore the east side of our house was. We have a huge tree on that side which prevents anything but moss and weeds from growing.  Several years back we tried to plant a few things but they mostly died out. At the base of the tree, tons of stubborn, woody weeds were surrounding the trunk. I started to get some ideas about transforming the space, and Jaime remarked that we could spend a few hours out there over the weekend and clean it up a bit if I wanted.

Sunday dawned and that side of the house was on my mind. In the afternoon, Jaime and Lucas headed out to run a few errands and I went out there to measure an area for our compost bins, thinking that Jaime could pick up a few concrete squares while he was out. It was a nice day and the area was shaded, so I decided I’d get started pulling a few weeds. Man oh man, it was hard. I had to throw all of my body weight behind much of what I was pulling out.  We are having a dry spell here in Michigan and the weeds had anchored themselves deeply in the hard soil. A bit later, Jaime and Lucas returned.  Jaime helped me put the concrete blocks down and then he and Lucas left for a soccer game they were attending in town.  Once the vast majority of the weeds were pulled and dug out, I went inside to eat dinner and make a few phone calls.

I probably should have stopped then, but after dinner, I figured I’d go out for just a few more minutes and get started on an idea I had earlier since Jaime and Lucas weren’t around. We have rocks in various places around the yard from past landscaping, and I thought I could use them to edge a flower bed that would improve the look of the area. So I began prying the rocks out of the ground, pulling them over with Lucas’s orange snow sled. I needed to dig a shallow trench to hold the rocks, and I tested it out to see how difficult it would be. That hard earth got in my way again and I had to jump on the shovel to break through it. I got into a rhythm. The area was longer than I realized (30 feet long and 4 feet out from the house), so I needed lots of rocks. I went into the back to gather more. Minutes turned into hours. I was absorbed and happy.

I was finishing up the edging and moving a few lilies over when the boys arrived home. Lucas helped transplant and water in the flowers. I finished up a few last details and surveyed my work.  I really wish I had taken a before picture. It’s just that when I got started, I had no intention of formulating and executing the entire plan. I was pretty thrilled with the end result though!

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A pretty nice flower bed! (Notice those sparkling windows in the background…)

It wasn’t until I went into the house that I realized how long I had been working. The boys left for the grocery store at around 2:00, and I finished up the job around 9:30. I took about an hour to eat dinner and make some phone calls, so all in all, I think I worked about 6.5 hours on this job. I checked my Fitbit and was shocked to see I had logged 16,000 steps and 7 miles for the day, an all-time high for me. At first I felt pretty elated! After all, the area looks about a million times better and I felt healthy and strong the whole time I was out there. It wasn’t as though I felt tired and pushed through the exhaustion, I actually felt strong the whole time.  Then I started to get nervous. Six plus hours of manual labor was probably over-doing it. I was so high on adrenaline and enthused by the progress that it never once occurred to me that I should stop. Oops.

I showered, did my night treatments and got into bed. Then I felt it. A sore throat. I figured it was probably from allergies but it still scared me a little bit. And my muscles were starting to talk to me about what I had put them through. Apparently my legs were opposed to hours of crouching and my neck and back had a few things to say about the weed pulling and rock prying. What was I thinking?! Oh right, I wasn’t thinking. I let myself be controlled by the possibilities and the progress I was making. I was caught up in my clean window perspective and I forgot all about my limitations.

This isn’t the first time this has happened, but it’s the first time in a while. I’ve been much more attentive to my body lately as my CF has pushed its way to the forefront of my life. When I was younger and healthier, this was the way I completed home projects all the time.  I would work and work like a crazy person because I love to get things done. I’m impatient for the end result. I would still operate this way if I could. I think subconsciously I want to forget that I have cystic fibrosis and live life the way I used to sometimes, even if it’s just for an afternoon. The girl I am in my head often doesn’t match the girl I am in a body affected by CF.

The next day was July 4th and I felt surprisingly fine through our family barbecue and pool party. I was tired, but a normal level of tired. July 5th dawned and it hit me. I was so sore that every movement hurt and all day long I was sooo sluggish.

It’s been a week now and I’m fully recovered from that afternoon. I know I need to pay closer attention to my body, but I can’t say I regret what I did. The east side of the house looks great, and I feel proud to have fixed it up all on my own. Forgetting all about my cystic fibrosis for an afternoon–that was pretty great too. It was nice to just live, and work, and accomplish, and be. It was nice to ignore the can’ts and don’ts and shouldn’ts. It was great to experience that energy and stamina again, however short-term. Sometimes I feel like CF has taken away so much of my vitality. But last weekend I was reminded that it’s still there, even if it’s been subdued by this disease. It was good to remember that although my body is weak at times, there’s still plenty of strength there too.  That’s what a clean window perspective will do.

Happy Birthday Betsy!

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Last Thursday was Betsy’s birthday! If you’ve been following the blog, she does a great job of writing special birthday posts for Lucas and for me so I thought in honor of her thirty-*cough* birthday, I would attempt to pen a similar tribute for my lovely and talented wife.

So, here are few things that make Betsy, Betsy!

•Betsy loves the outdoors! Whether it’s a day at the beach, a walk through the woods, or even doing work out in the yard, there’s something about the fresh air and sunshine that she especially loves. Lucas has inherited the outdoor gene. I am the lone indoor cat in the family. But seriously, my hair doesn’t hold up well in the elements.

•This is probably not surprising but Betsy, being at one with nature, also has a green thumb. She loves to plant flowers every spring and tend to them until they finally fade with the cold Michigan winter. The last two years Betsy has also planted a vegetable garden. We don’t have a ton of space and have even less sunlight due to all the trees in our yard. I’ll admit I was skeptical but somehow she has managed to coax life forth from the various pots and plots.

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Betsy and Lucas will be harvesting tomatoes and zucchini in the near future!

•Betsy has zero sweet tooth. She literally hates 99% of all desserts. On occasion she can be persuaded to have some ice cream. She has sporadic cravings for homemade caramels. But when it comes to cakes and pies and cookies and pastries, she has very little interest. I do not understand this personally.

•Betsy has a remarkable memory. She can recite most of Lucas’s favorite stories without even looking at the book. She remembers phone numbers and credit card numbers from years gone by. She can recollect the lyrics of obscure songs from the mid-90s after hearing the first few notes. Most importantly, she remembers where Lucas and I leave our stuff. This is most helpful. We would be lost without her!

•Betsy is a coffee-holic. Give her Starbucks or give her death!  She always starts her day with a mug (or two) and isn’t opposed to warming up the pot in the afternoon when she’s in need of a little extra caffeine. She likes all kinds of coffee drinks but she prefers to take her coffee hot and black.

•Betsy is practically unbeatable at Scrabble. We’ve played approximately three hundred times since we got married and I think I’ve won twice. Not only is she a logophile (she would have known that word, I had to look it up) but she also possesses that killer Scrabble instinct to add an ‘s’ making a seven letter word that already contains the letters ‘z’ and ‘k’ plural…oh yeah, and that ‘s’ was probably placed on a triple word score.

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Mission impossible.

•Betsy is a great mother. Dare I say, the best. She loves Lucas more than I thought was possible. She is patient and self-sacrificing. She’ll do just about anything for a smile from our boy. Even if that means making pancakes in the shape of all twenty-six letters of the alphabet or crafting a chicken coop out of popsicle sticks for his toy farm or reading The Complete Adventures of Curious George all in one sitting. Lucas is lucky to have you!

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Betsy and her favorite boy.

So happy (belated) birthday to my favorite person on the planet! Thanks for loving me and Lucas and for simply being the best!

Good-bye Preschool

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It seems like just yesterday I was writing a post about Lucas starting preschool. And here I am, just over a year later, writing about preschool ending. It was fun to go back and read my other post and remember those first days. It was so hard to let him go. I’m pretty sure it was more difficult for me than it was for him. Thankfully we both adjusted and by the end we were all sad when preschool ended. Last summer he was reluctant to go and would throw himself into my arms when I picked him up, so excited to see me and to head home. This spring and summer, he was thrilled to go and when I picked him up, he’d always want to stay until the very last second. He talked about his friends and school activities at home all the time.

We’ve seen Lucas change in so many positive ways due to his preschool experience. He’s better at sharing and taking ideas from other kids. He is much more calm and comfortable in big groups of people. His teachers report that he is confident and willing to speak up and contribute to the group when it is his turn to share ideas. He is more persistent with difficult tasks and he’s more independent. We loved his play-based preschool program which gave him loads of time outdoors and the freedom to explore and learn about things that are of interest to him.

I’d love it if he could stay in a classroom like that forever, but it’s time for that experience to end and a new adventure to start. He’s going to be attending a half-day young fives program this coming year at one of the local elementaries. I’m sure it will be another adjustment for all of us, but I’m hoping that with one year of school under his belt, he’ll feel more confident starting out.  I know I will.

Here are some pictures of his year. If you’re an email follower, click on the title of this post to visit actual blog. There you can view the slide show.🙂

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We sure love our preschool graduate!