Happy New Year! (Two Months Late)

Standard

Happy New Year! I realize it’s March but it’s the first blog post of the new year and better late than never, right? Kind of my philosophy in life if I’m being honest. Anyway, I hope your 2020 is off to a great start!
The new year started off with more good news!  Betsy has another follow up appointment with her pulmonary specialist on January 3. Her FEV1 was up again, this time to 43! That’s a 14 point gain and is nearly up to the same level as when Betsy started this blog. Nobody really new how much of an effect the Trikafta would have on her FEV1. There hadn’t been any patients in the test groups with starting FEV1 scores as low as Betsy’s. Needless to say she was thrilled. The doctor was even cautiously optimistic that she could still see more improvement, especially after she is able to resume consistent exercise.

B0D2D47F-15CA-46C3-AD15-67B2AF635BF9

Alena is a big fan of trikafta

Even more than the breathing test score itself, the change in Betsy’s day-to-day life is more than evident. Coughing for hours on end to start the day is a thing of the past. Betsy has been bound and determined to reclaim some of the household duties. She has implemented a new laundry system and, amazingly, we now retrieve clean clothes from our drawers rather than the laundry basket. Betsy and I are back to sharing the grocery shopping and the cooking! Last weekend, we had been toying with the idea of moving a desk up from the basement for Lucas to use. We’d get to it later, I thought. I had to run out briefly and in the 20 minutes that I was gone, she managed to carry up a desk from the basement and rearrange the furniture in the dining room. This is the kind of shenanigans Betsy would have attempted on a regular basis ten years ago. The “just do it” part of her personality had been suppressed for a long time out of necessity. No longer.

E048FBF0-C08E-4A3D-BCEB-990FDA700678

The desk. In its new home.

In other news, Alena continues to give us a run for our money! I can’t even believe I’m writing this but she will be one year old in just two weeks! She’s been trying to walk for about five months now. One of her favorite activities is grabbing the hands of whoever is closest and dragging them around the house! But just prior to her ten month birthday, she started taking solo steps and now she walks unassisted whenever the mood strikes. Alena is starting to talk as well. She says “mum” quite clearly and intentionally. Not sure where she got the British accent but there you go. She calls Lucas “baa” and if she wants to be in your arms she’ll say “up”. Nothing resembling “dadda” as yet. She calls the much beloved squirrels she sees out and about “pwa” and any human being, regardless of age, is “baby.” Alena’s sleep has been super irregular, but she’s awfully cute so we’ll call it even.

9B3BFF13-0380-4FD1-8655-2980817808AB

Our almost one year old!

Lucas is really enjoying second grade. He loves his teacher and has some of his best friends from school in his class. He’s a great big brother. He loves to make Alena laugh. He’s (almost) always willing to give her one of his toys or share the iPad. The other day I was trying to get dinner ready and had stuck her in the pack ‘n play. Alena found this arrangement to be suboptimal and was voicing her opinion. So Lucas climbed in with her and started to play with her. He’s also become a very big Star Wars fan over the last few months. He watched all eight movies in the lead up to the holidays just in time for us to see The Rise of Skywalker in the theater. Now he spends his free time making up his own Star Wars movies. I’m hoping one day he’ll sell the rights to his namesake George (Lucas) and use the proceeds to fund my retirement.

B15F21FE-4097-4CDC-8CAA-C2087506F53A

Siblings ❤

Well, only a short time until spring now! I’m looking forward to the warmer days and being outside. I’m also subconsciously preparing myself for all of the plans that Trikafta Betsy will undoubtedly have in mind for us to do. 😉 It’s going to be a great spring!

Fall

Standard

It’s amazing how a small thing like having a baby will limit your time for all non-essential activities, including blogging. It feels like just yesterday we were enjoying the last, long, warm days of summer. Hard to believe it will be November in two days. A lot has happened in the last couple of months.

summer2019.JPG

At the park. In short sleeves. Must have been July.

Lucas has had a great start to second grade! He’s growing in different ways and learning a ton. We love his teacher this year. Lucas’s first grade teacher was great too but his teacher’s approach to homework this year is so much better for us. Last year we would get a packet on Friday which was due the following Thursday. We are just not the kind of people who are good about doing a little bit each night. We were constantly realizing it was Wednesday and we hadn’t started even the first page. It made for a lot of long, unpleasant nights. This year his teacher sends home one page of homework every night. It’s so much more manageable and Lucas has even realized he doesn’t hate math. Lucas’s three best friends from school all ended up in his class which has been great for him too. Earlier this week he programmed a video game in his technology class. A couple weeks ago his class went on a field trip to the botanical gardens. It’s been a great year so far!

LucasBusStop

“Dad, you don’t have to walk me to the bus stop anymore.”

Lucas has been playing a lot of soccer! He just finished the fall season with his school’s rec & ed team. He’s played with most of those boys since kindergarten and it’s been fun to be part of that community over the last three years. He also joined the travel club that I coach for this past August. It has been a really different experience for him but he’s learning a lot and has had fun wearing a real uniform and playing in a legit tournament (we took second place!). We finish up our fall season this weekend!

0BF15A96-DA49-4006-9329-4EF573B310F6

6FE3FF97-966E-4457-9915-9F44AAAE6261

We play a lot of soccer.

Alena is seven months old which blows my mind. She has become so interactive recently. You forget how much and how quickly they change when your kids are almost eight years apart. I came home one day and she was sitting up all by herself. Now she’s trying to pull herself up on furniture. Crazy. Alena definitely seems to be an extrovert. She is energized when she is around people. She always has a smile for people, even strangers (Lucas would always hide his face…he still sort of does, haha).

IMG_1206

At Trader Joe’s. On the lookout for new friends.

Alena is trying solid foods. So far the experiment has been met with mixed reactions. Alena loves her big brother. She is always excited when he gets home from school and she loves to sit on the floor and watch him play. Lucas loves to make her laugh!

IMG_1205

Sibling love

Alena needs remarkably little sleep. I guess I am to blame for that. I tend to be more of a night owl and function pretty well on five or six hours. Alena sleeps more than that (don’t worry) but her naps have been inconsistent and recently she’s been more wakeful at night too. It feels like she just doesn’t want to miss out on anything. She’s growing and happy so I guess it’s not a huge problem (apart from the fact her parents are buying a lot more coffee than usual).

AlenaAbigail.JPG

Who’s got time for sleep? (Photo taken at 4:21 AM)

One of the biggest developments of the past few months is that Betsy was approved to start taking a new drug aimed at the underlying cause of cystic fibrosis. There has been a lot of scientific breakthroughs over the last several years but until now, the new treatments didn’t work for people with Betsy’s genetic mutation. We knew that this new drug was in the pipeline but thought it would still be six to twelve months before it would be available to patients. Sometime in September, though, we got a call from the doctor saying she could apply to start the new drug early. She was approved in October! We had to frantically work out a few logistics, namely how to wean Alena. Initially, we were under the impression that Betsy would have to stop nursing the baby but thankfully after a few different consultations, we determined that reducing the feedings and supplementing with formula would be sufficient. Whew. Betsy has been on the new drug for less than two weeks but I don’t think using the words “life-changing” is an exaggeration. Her symptoms are greatly reduced. She doesn’t spend the first three hours of her day coughing. The other day, Betsy carried the baby and a basket of laundry up from the basement and didn’t feel overly winded. She is starting to exercise again. It’s remarkable. I am sure Betsy will write more about this but we are so thankful for this new development. It feels like we’ve gone back to a time when her disease seemed more like a footnote rather than the essay itself.

BandA

Living her best life.

For years we have been participating in the Cystic Fibrosis Foundation’s Great Strides campaign. The sole purpose is to raise funds for cystic fibrosis research. This new drug is a direct result of that research. We are so thankful for our good friends, Ross and Deb, who organize our Great Strides team every year. We are so thankful for everyone (many of you who are reading this) who has ever donated money to the Great Strides campaign. Every single dollar contributed has led to this medical breakthrough. We are so thankful for the scientists who are doing this important work. And it’s not done. The Cystic Fibrosis Foundation has recently unveiled a new research agenda to continue the development of treatments for every person with cystic fibrosis with an end goal of finding a cure for the disease. It actually feels like this could happen within Betsy’s lifetime.

GreatStrides2019

Great Strides 2019

So that has been our fall! We are excited, tired, and thankful but above all, our hearts are full of hope.

Thirty-seven weeks

Standard

In some ways it feels like the pregnancy has flown by. Well, at least to me. Betsy might give you a different answer. When we found out Betsy was pregnant it was hot and humid. In the last month, Lucas has missed eight days of school due to snow, ice, and polar vortexes (vortices?). I guess the change in weather is as good as any indicator to show how far we’ve come.  This past Wednesday, Betsy reached week thirty-seven of the pregnancy. It hasn’t been an easy road to get to this point. Betsy recently went back on IV antibiotics. Her breathing wasn’t quite where it should have been and in an effort to make sure she is in the best possible place heading towards labor and delivery her doctors decided it was the best course of action. Betsy also came down with a stomach virus (which she got from Lucas, which he might have gotten from me) which has been pretty draining. Still, she’s made it to thirty-seven weeks and that feels like a pretty big deal!

A7E75EB1-C334-4CFF-9EEC-4917ED338722

The day we found out Betsy was pregnant (miss you summer)!

8459CA23-CC8A-4BA7-AF97-67F16ADF5351

Thirty-seven weeks!

It’s particularly significant because Lucas was born at thirty-six weeks! The story goes something like this: unsuspecting couple is having a quiet night in; they decide to watch a movie; pregnant wife suggests some ice cream; dutiful husband goes to fetch ice cream; husband returns with ice cream only to find his wife’s water has broken; frantic couple rushes to the hospital; baby is born twenty-seven hours later. Just like in the movies! We were caught off guard, to say the least. Betsy was bound and determined that this time around there would be zero chance that we weren’t ready for the arrival of our little one. The baby’s room has been ready for close to two months. All of the baby clothes have been washed and put away. Hospital bag has been packed since about November. 🙂 The infant car seat was installed a couple weeks ago. We have the name picked out (true story, Lucas was born so early we hadn’t even decided on his middle name yet!). We feel ready!

IMG_1340

We’ve got a name, even if all my suggestions were rejected! 😉

Of course, we have no idea just how big a change we are in for. It’s been seven and a half years just the three of us. And in the last few, in particular, we’ve found a certain equilibrium. That familiar, family dynamic is bound to be disrupted with the introduction of another human being. Last weekend we had one last “Lucas gets to make all of the choices” day. After church and a quick lunch we headed off to a park nearby to check out some great horned owls who nested and had babies. Then it was off to an arcade for a couple of hours of fun and games. We finished the day seeing The Lego Movie 2 and snagging some of his favorite chicken quesadillas from Qdoba for dinner. Of course we are all thrilled for the arrival of our baby girl but we have also loved every minute of being a family of three!

BC04272E-AE62-4BDF-B178-03D8DD9EF17D

Betsy and Lucas tearing it up at the skee-ball lanes!

So, yes, all is well! We feel blessed. We feel ready. We have no idea what weeks 38-40 will bring! And we are looking forward to introducing our little girl the next time we post. 🙂

P.S. As it’s International Women’s Day, I thought I would take a moment to pay tribute to all of the extraordinary women in my life. First and foremost, my wife Betsy, who has done what seemed impossible and soon will be the mother of two all while educating children and finding all of my stuff! To my mother Debbie and my mother-in-law Mary who raised 10 children between them without even one iPad (how, I’m not entirely sure!) and who are now a huge support to Betsy, Lucas, and me. To my sisters Tina and Ede and my sisters-in-law Carolina, Kristi, Julie, Laurie, and Carrie who are all raising families and pursuing meaningful work. I salute you all!

Dreaming Still?

Standard

Have you ever woken up from a dream so vivid that you thought it was real? The kind of dream where you are almost surprised to find out it was a figment of your imagination? I haven’t! I almost never wake up even remembering my dreams.  I’m sure there is a psychological explanation for that. Betsy thinks it’s weird. It probably is.

Lately though I’ve felt like I have kind of been stumbling around in a dream. A vivid dream that feels real but hardly seems possible. Back in July we found out that Betsy was pregnant. Pregnant. We are overjoyed! It is a blessing that we did not imagine ourselves experiencing again. We had always wanted a second child and a sibling for Lucas but time and circumstances seemed to suggest that it was not a part of God’s plan for us. And, after a period of sadness and disappointment, we found true peace and were truly in love with our family of three. For the last seven years we have developed a rhythm and equilibrium and so much love among the three of us. And now we are going to be four? It hardly seems real.

But of course, it is real.

I am reminded daily by Lucas’s musings about his soon-to-be little sister. His excitement is palpable.

“Dad, do you think Lightbulb (we are keeping the real name a secret for now) will like animals?”

“Dad, how big is Lightbulb this week?” (Asparagus? Celery? Squash? I always forget!)

“Dad, I can’t wait to show Lightbulb her new room!”

img_0315

Lucas getting some practice holding his new cousin Elías.

There are other, daily, reminders that there is actually a baby on the way. Betsy is getting bigger and bigger. We can all feel the baby kicking regularly. Betsy has nearly eclipsed the 31 week mark. Generally speaking this pregnancy has been significantly tougher on Betsy.  She was really sick during the first trimester and there were some really rough days. Even some days when she thought she might not make it to 31 weeks. Still, she bore it all with a smile. Betsy’s lung function has held steady throughout the pregnancy and for that we are grateful. She completed a round of antibiotics over the holidays which actually gave her a much needed boost.

img_0314

There’s either a baby in there or an alien!

Still feeling the positive after the effects of the medications, Betsy has moved on to a serious nesting phase of late. Betsy has been busy washing up all of the baby clothes and setting up the baby’s room. Lucas was born four weeks early and honestly we could not have been less prepared. Betsy is determined not be caught off guard this time around even our little girl decides to make her entrance to the world before the due date.

img_0313

More pink this time around!

In spite of all the circumstantial evidence, sometimes I’ll still look over at Betsy and say, “WAIT. You’re having a baby?????” Most days I really do have to stop and pinch myself to be sure I’m not still dreaming. I’m pretty sure I’m not. 🙂

img_0316

Can’t wait to meet you sweet girl. ❤

 

 

40

Standard

June 30, 1978.

Jimmy Carter was president and Grease was #1 at the box office. Chesapeake by James Michener was atop the list of New York Times bestsellers and “Shadow Dancing” by Andy Gibb was probably playing on the radio. Fans of the San Francisco Giants watched Willie McCovey become the 12th player in Major League Baseball history to hit 500 home runs and in Ann Arbor, Michigan a baby girl was born to Ron and Mary Waterloo. Their sixth daughter!

IMG_7468

June 30, 1978. Baby Betsy.

This past Saturday, we celebrated Betsy’s 40th birthday. It was a great opportunity to gather together with many of the people that love her the most. People have mixed feelings about turning forty. I know, I do! This October, I will…cease to be in my 30s (see, I can’t even say it!) and the pendulum of emotions swings back and forth on a daily basis. On the plus side, I still have my hair. But it has become a losing battle trying to pluck all of the grey out of my disheveled mop. I can afford to buy the really nice soccer shoes I used to dream about but often I can barely walk the day after I play in them.

I could go on.

For Betsy, turning forty feels different. When Betsy was born in 1978, the average life expectancy for someone diagnosed with cystic fibrosis was around twenty years. To have made it to forty and to be thriving is an unqualified victory. If Betsy had any grey hair (she doesn’t), it would be a badge of honor. Betsy has been through a lot in her forty years. There have been more than a few health crises along the way. Life now looks a lot different than it did twenty years ago but Betsy has not given in to discouragement. Betsy’s day-to-day existence is not without its difficulties but it is mostly full of joy and laughter and hope.

image1

1998. Bae (I think that’s what the kids are saying these days) home from college.

And we are hopeful! Betsy is feeling as good if not better than she has at many points in the last ten years. She is still chasing after our six and a half year old son, Lucas. Betsy is a great mom – always at his soccer games and school events. Lucas adores her! She has resumed a little running after some breathing and back difficulties forced her to take an unwanted hiatus. Her time for the mile isn’t quite what it was when she was tearing up the Mackinac Island Eight Mile Run back in college but she is running! She is still operating a successful tutoring business and making a difference in the lives of her students. She even manages to still have the time (and patience!) to help me find all of the things that I misplace.

IMG_6538

Betsy and her favorite boy (yes, I’ve been displaced 😉 )

There are a lot of exciting medical advancements too. The Cystic Fibrosis Foundation is constantly pushing the boundaries for new treatments and medications. We participated in the Great Strides fundraising campaign on a rainy Saturday this past spring. Our team amassed over $5000 in donations and nationwide nearly $30 million was raised, all of which goes towards funding cystic fibrosis research. Betsy’s pulmonary specialist is hopeful that maybe even within the next two years, there will be a new medication targeting the underlying cause of cystic fibrosis for people with Betsy’s particular gene mutations. A company called Planetary Biosciences has been working on new dietary supplements that have made a huge difference for Betsy and others. We feel optimistic!

32323602_10216877063463714_1795108119966121984_n

Team #Breathe4Betsy

To see Betsy at age forty is a testament to God’s faithfulness. It’s a testament to Betsy’s determination and perseverance. And it’s a testament to the love and support that we have received from our family and friends. Psalm 139 says “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” We are thankful for each one of those days! We don’t know how many there will be (none of us do!) but I know Betsy will live them to the fullest, surrounded by love.

Just like Saturday. Happy Birthday, Betsy!

WaterlooGirls

June 30, 2018. Betsy & her sisters.

Summer, summer, summertime

Standard

Summer is the best. I know some people are really into skiing and hot chocolate and all that jazz but give me the sunshine any day! It’s been a different sort of summer for us. Betsy’s stint on IV antibiotics was unexpected and required us to change some of our plans, but nevertheless we have had a great summer so far. We’ve spent lots of time outside and in the garden and at the pool. Here are some other things we’ve been up to over the last couple months!

Breathing Easier

Betsy has been PICC line free for almost two weeks now and has been feeling pretty good overall. She was back to see her pulmonary specialist last Friday and her FEV1 was holding strong at 38 so that was very encouraging! It’s an understatement to say that Betsy has felt liberated. She is not one to take things lying down and she certainly prefers not to be bound by the strict regiments that IV antibiotics require. Since the 4th of July, Betsy has been free to resume her normal life. She goes to bed when she wants (usually after only one or two friendly reminders from yours truly), she wakes up when she wants, she exercises when she wants. Ah, freedom!

IMG_9054

It’s a lot easier to play soccer with your 5 year old son without a PICC line in your arm.

 

Thank You

Even though it’s been a couple of months, I wanted to say a belated thank you to everyone who participated in the Great Strides Walk this year. We are grateful for everyone who walked with Betsy. It’s a small gesture but it’s a very meaningful one. In a lot of ways, Betsy walks the CF path alone and so it is encouraging for her to look up and see that there are people walking along side her. Thanks, too, to everyone who contributed to our fundraising efforts. As a team, we raised over $4000 that will go toward research being done by the Cystic Fibrosis Foundation. This important work is bringing new treatments to CF patients. It’s very encouraging and every dollar brings us closer to finding a cure. Finally, we wanted to thank to our dear friends Ross and Deb who have organized Team #Breathe4Betsy for two years in a row. Coordinating the team is a labor of love and we really appreciate their efforts that have made the last two Great Strides Walks possible.

18424244_10213533502996792_695411394587769235_n (1)

Team #Breathe4Betsy 2017

And I Would Walk 500 Miles…

Speaking of walking. Back in January of 2016, Betsy got a Fitbit. Last December she had a streak of 100 straight days of achieving the target of 10,000 steps per day. On July 17, Betsy completed 365 consecutive days of logging a minimum of 10,000 steps. One whole year. That’s not 500 miles. That’s approximately 2200 miles. Crazy weather conditions, being sick, dealing with back issues, a PICC line stuck in her arm – nothing has prevented her from getting out and staying active. Physical activity is so important to her overall health and being physically fit is what allows her to do so much in spite of her compromised lung function. I’m really proud of her. Long live the Fitbit streak!

fitbitstreak

July 17, 2016. The last day Betsy didn’t walk 10,000 steps.

Detroit City F.C.

My borderline insane affection for soccer is well documented. In 2012, I started following a 4th division soccer team here in Detroit. Detroit City F.C. may technically have amateur status but you’d never know by going to the games. When I was a kid I would watch games from Europe on TV and dream of having a local team of my own to support. Now I do. The last couple of summers, though, Lucas has gotten on to the bandwagon as well. I took him to a game two summers ago and we barely made it to halftime before he was ready to leave. Fast forward to 2017 and he is almost as obsessed with the team as I am. He knows the players and pretends to be them when we play soccer in the backyard or in the kitchen (yes, we do that). A couple weeks ago we were at a game and decided to hang around for a little while afterwards. Lucas got to meet several of the players. He was over the moon!

Lucas&City3

Lucas with some of his favorite Detroit City F.C. players!

Silver Holloware

On July 14, Betsy and I celebrated our 16th wedding anniversary. In case you were wondering, the traditional gift for one’s 16th wedding anniversary is silver holloware. In case you were wondering, holloware is stuff like sugar bowls and tea pots. Having exactly zero need for a silver soup tureen, we decided to skip the gifts. Instead, we got take out and had a picnic at one of our favorite parks. It was a low key evening, but it was fun to reminisce about the last sixteen years and think about the next sixteen (assuming Betsy doesn’t kick me to the curb before that!).

IMG_1983

The day I won the lottery.

Eventually school will resume and leaves will start to change color. But there is still a lot of summer (glorious summer!) left. In a couple weeks, Lucas and I are taking a road trip to see his other favorite soccer team, Manchester United, play in Washington D.C. Lucas’s 6th birthday is coming up at the beginning of August. And we have a long weekend at Lake Michigan penciled in for later that month. I suspect Betsy may be sizing up one or two more projects around the house as well. We are having a huge pine tree removed from our yard and if I’m not mistaken, Betsy will be eyeing that plot to expand her garden. Being married for 16 years gives you a 6th sense for that sort of thing. 😉