15 Years! A Husband's Thoughts on Living with a Brain Injury

Credit: Amber McKenna (I think!)

Hi readers!This is Niels, taking over the blog today for Jen.

Today is the 15th anniversary of my wife's first Traumatic Brain Injury (TBI). She's had 2 more since then but Jan 20, 2004 was one of the most impactful dates in her life. That was the day her previous normal was shattered, and the beginning of many new firsts.

Usually Jen writes something to commemorate these milestones, but this year, not-so-ironically, her brain is a little extra foggy and she is having trouble getting the words out. So, she asked me to write a bit about what it's like to be married to someone with a brain injury.

Starting off, keep in mind that having a TBI is a massive trust exercise as - especially the first year(s) - my wife couldn't trust herself to remember even basic things we usually take for granted. Besides the obvious items of massive headaches and other odd brain-related issues, she had challenges with even the most mundane of everyday tasks such as getting dressed. Sometimes, when she got undergarments and regular clothes on, she put the undergarments over her regular clothes. More than once, she would leave the front door open after letting her dog out in the dead of winter in Michigan. One time she nearly blew up the neighborhood as she left on the gas on her stove in her condo.  (Fortunately, her friends had her call the gas company when she wasn't feeling better!) While every brain injury will be different, little things like that will happen.

That's where the trust exercise starts as every TBI survivor will now have to rely on others for daily tasks from day one. It will be frustrating as it will mean you not only have to start healing your injury, you also have to start learning things again, perhaps in very different ways. And that's one of the reasons why a TBI survivor needs all the help he/she can get. One might not always see the need for help, but one of the first firsts is to realize you can't do it alone.

For my wife this was especially tough. I hadn't met her yet. Her mother lived in another state and her father in yet another. She was lucky she had some close friends to fall back on and the ability to attend a first-rate Brain Injury Center in her own town. While on the topic of friends, you will see scores of them fall by the wayside as you'll not be able to do anything but receive for a while. You'll also see TBI patients be 'flaky'. They may look "normal" on the outside, but they are different that they person you knew. They simply forget appointments as their brains are far too busy with the healing process and trying to make sense again of everyday tasks. They will need lots of grace, especially in the early months. Jen has often said that one of the hardest parts of healing from an "invisible" injury is trying to keep up with the expectations of others that you are more healed than you are. 

Let's fast-forward a couple of years. It's now 2006 and my wife was able to regain most of her independence, but was forced to give up her previous work life as both a published author and an associate marketing director at a major book publishing company in Michigan. I met her through 1-800-stud.com (our inside joke) a.k.a. Match.com and was faced with a dating reality that was very different. Not just because of her TBI but also that she had to trust yet another person.

Almost one year later we figured it all out and were married in July of 2007. Our son was born in December in 2008. That doesn't mean that all was well related to her TBI. The pregnancy in particular was really, really tough as she couldn't take the medications that helped her function better. We all had to learn that a TBI is permanent, a new normal and that any and all additional hits to her head would inevitably add to her limitations. There were lots of steps forward but also a number of steps backward. We were now parents and my wife had a sense of purpose again and felt a camaraderie with other sleep-deprived stay-at-home moms. But when our son started school full-time, a depression was looming until  she was able to find a new hobby that she embraced with the same tenacity she once did in her previous life. But it was different.

She was a creative talent (an author) and not only did the TBI take her ability to write, but it also took her stamina and consistency. That was perhaps one of the hardest 'new normal' we had to deal with. She has bursts of creative juices flowing and would be in bed with a debilitating headache for the next couple of days. That inconsistency is something that will most likely never go away.

How does all this impact the Significant Other (SO) which in this case is me? I'm not only the husband to my wife and the father to our son but sometimes I have to play the referee in situations where she simply doesn't see she's hitting a TBI-related wall without slowing down. Having bursts of energy can very easily lead to trying to push too hard to get things done before the energy dissipates. This is tough as you also don't want to stifle the creative juices too much as they only flow on limited occasions.

A big part of our marriage dynamic is that Jen has to trust me when I tell her that I see a crash coming. (There are signs I see like a certain look on her face, her eyes not focusing as well, her words slurring a bit). I know how sacred that trust is and am careful not to abuse it or take it for granted. We are a team and we are both better when Jen is able to have a good day.

This 3rd job (the referee) is a critical one as it helps all of us to remain a functional family. As her husband, I can see when she might run head-long into a TBI crash and have to tell her to stop or even to hit the hay. This is a more an art than a science, I don't want to seem like I am bossing Jen around, so we have learned to talk about the TBI with humor.

I think of it like an engineer, which I am by trade. Getting plenty of rest is a critical piece to help a TBI survivor have more good days. Slowing down that engine just a bit will make it run just a little longer on that same amount of gas. Funny thing is that our ten-year-old son seems to sense these situations as well and has sent her to bed on a few occasions when he came home from school and saw how she was acting.

All-in-all, our family life is not too different now from family life between neurotypical family members as have we learned to control her environment. Not just telling her to slow down at times but also to help reduce the headache triggers. Simple things such as reducing noise in the house (no hardwood throughout... sorry HGTV!), make sure you don't plan too many activities in busy places and definitely not too many on the same day. We give her lots of ability to rest in between vacation days, in new places and choose to drive to most destinations inside the US and Canada as airports are the worst for sensory overload. Basically we do everything we can to reduce stress and stressful situations. 

All of these things combined allow her to function almost normally to the casual outside observer and allowed her to find a new way to be creative as one of the more prolific and creative modern quilters I know (yeah, I know I'm biased but I'm running with it anyway...). It is very rewarding to see how controlling her environment, slowing her down when needed and the proper medication (Botox to reduce headaches and some brain stimulants) make her function to a level where she can be a contributing member of society again. Her quilts (never sold, always given away and almost never commissioned - too much pressure) have found homes in multiple continents, multiple countries and numerous states and provinces, and have provided comfort to those in need and joy to those we love. I know it has given her great joy to feel like a giver again, and to be able to show appreciation to those who have accepted her as she is now.

While we really didn't want to have to celebrate a TBI anniversary, it does allow the occasional retrospective that I hope might help some other SOs caring for brain-injured loved ones and to tell you that with patience, help from friends and family and a little bit of perseverance you can create that new normal, a new comfort zone and a life worth living despite that pesky TBI.

I love you, Sweetie, and we'll get you an almond-flavored cake to celebrate as soon as winter storm Harper moves on.

By the way, Jen is commemorating her 15th year post-TBI with an epic quilt, one she will finally keep for herself.

You can encourage her throughout the year and see her progress on Instagram at #TBITempQuilt. To see what she's currently working on, follow me at deJongDreamHouse.

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Quilt #30:: Always a Buckeye

Fifteen years ago, I was happily living in Michigan, working at a job I loved, living in my own home with my dog, dating guys I met on the internet, and finishing up the manuscript of my first book. I had no idea that I was three short months from the event that would affect every one of those things. 

I have written in depth about my brain injury many times, like here, here, and here. Mostly I mention it in passing as a fact of my life, not much different than the fact that I am married and a mom. Perhaps I will write another update in January when I hit my 15-year milestone. 

So what does my brain injury have to do this quilt? That's the story. After my TBI set off the chain of events of losing my job, my house, and my book contract, I was still dating guys I met on the internet. I only half-jokingly say that I did for the free meals, but I really was quite concerned about where I would land when I lost my house. I still very much wanted to get married but wasn't confident about my prospects as an unemployed, soon-to-be-homeless, brain-injured woman in her 30s. 

One of (many) challenges of living with a brain injury is how your relationships change. I remember one of my doctors trying to cheer me up by saying I should be grateful that I was single because 80% of couples divorce after one person sustains a TBI. I did not feel better. Even without a spouse, I found that, because I looked fine on the outside, most people assumed I was back to normal. But I needed more sleep and was limited in some of the things I could do. My tolerance for places that were loud, or flashy, or crowded, was next to nil. There is an emotional weight to trying to pretend you are okay, of wanting things to be back to the way things were. But people with TBIs don't handle stress well. As a result, we crash and need more sleep and isolation. After a while, people just quietly stopped inviting me to do things. My real world got really small. But thanks to the internet, I was not completely cut off from the wide world. Hello, online dating!

Before I hit my head a second time in a year, sealing my fate as a medically-retired woman at 33, I did meet a nice guy in Ohio. I would go down and spend a week at a time getting to know him and his friends. I'm pretty morally conservative, so instead of staying with him, I would stay with his friends during my visits. While the relationship didn't work out, I really liked his friends.

I started thinking that since I needed to move anyway, maybe moving to Ohio would be a good idea because the friends I had made there all met me post-TBI. It lifted the emotional weight of having to pretend I was better, and freed me of the expectations my Michigan friends unintentionally placed on me.

One family I stayed with was the Price family. Even though Angie and Trevor are younger than me, they were more settled than I was. They had been married for a decade and had 3 young kids...and a spare room. I loved the sense of belonging they gave me when I stayed with them. They made me feel part of the family. It was an oasis in a turbulent time. 

After my first Ohio relationship broke up, I decided I was open to meeting other guys in Ohio. That leads to a whole other funny story about how I met my husband. As Niels and I got more serious, I made the move to Ohio. Niels lived in an apartment in Cleveland, and since I didn't know anyone in Cleveland, I moved in with Prices until we got married and bought a house in Canton, 45 minutes south of his apartment.  Fortunately for Niels and the Prices, we were only engaged four months before we got married!

Niels showed his dedication to me by driving 45 minutes from work to the Price's house to see me almost every evening, then drove back to his apartment an hour away. During those evenings before he bought our house near the Prices, we talked about our future. So many of my memories of that time are lost due to a lack of pictures, but the one thing I recall vividly is being in the Price's living room with Niels talking about future babies we might have. We agreed on the name we gave our son less than two years later. I don't have a picture of that moment, but I love this picture of Angie meeting our D when he was only a day old.

In 2014, the Prices moved to North Carolina. Even though we no longer saw each other often,  I will always be grateful for the generosity and hospitality. So how could I show my gratitude? With a quilt, of course. And what better design to celebrate our Ohio connection than an Ohio State quilt?

For those wondering about the dimensions, these are my notes. I can't guarantee they are accurate, but I believe they are pretty close. 

For the label, I used my new Silhouette Cameo to cut out the online of Ohio. It's still one of my favorite labels.

But best of all, the Price family moved back to Ohio two years ago!

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The Choice. A Poem in Honor of Pregnancy and Infant Loss Remembrance Day

Today is Pregnancy and Infant Loss Remembrance Day. Like (at least) 25% of women, I lost a baby I wanted and loved.

I was 35 when Niels and I married, so we knew we didn't want to wait to start our family. Still, we were surprised to find out we conceived on our honeymoon. A week later, I miscarried. Two months later, I was rushed to the ER when I learned that not only was I pregnant again, but I was also losing that baby, too. I had complications after my second miscarriage and I was crushed, thinking I would never carry a child to full term. Three months later, after many tests and with the help of an OB who both encouraged and cried with me, I conceived again. It was Easter Sunday. I was put on medicine to help my child stay put, but it wasn't until my third ultrasound that I started to believe this baby might be the one God wanted me to raise. 

Last year, for my birthday, my mom wrote a poem that eloquently captures both the sorrow of our loss and our gratitude to God for our son He deemed perfect for us.

The Choice 

 Angel Gertrude had recently been advanced to become the Selector of Babies. Her new position had her finding the perfect match of a new baby to expectant parents. Her first assignment was for a newly married couple who had waited long to find each other, and who were eager to start their family. 

They were honeymooning on a beautiful Caribbean island full of color, fragrant blossoms and exotic cuisine. Gertrude thought she had the perfect choice.....an active dark-haired boy who was full of the passion and percussion of this island. He would be one to bang out his rhythms on anything and everything. His joy would be his drum set, which he would practice on for hours on end. Every time the couple would hear him, they would be reminded of their wonderful days in the Caribbean. Her pleasure in her choice was soon squelched as God shook His head at her list. 

“He is a delightful boy, but this is a very special couple with unique needs. I think we can do better."  And God welcomed the little soul back to join Him in Heaven. 

Gertrude's brow puckered. She wanted so much to please her beloved God, so she tried again. This time she selected a perky little girl....so full of life and activity. She would be one to run and skip all day outdoors, who would stop napping at 9 months, and would be difficult to get to come indoors, and even then would be dancing and running about until the late hours. 

God checked her list again, and slowly shook His head. A lovely girl, but not the perfect choice for this couple. And He blessed the little soul and welcomed her with open arms back to join him in Paradise. 

Now Gertrude was becoming nervous. She loved her new position, and really didn't want to go back to shining halos. She looked at the sad couple below who wanted so desperately to have a child of their own, and she felt so badly that she had not yet given them the perfect match that would please God. 

 She studied the couple, and watched as they sat at their computers for hours on end. She saw the woman wander through bookstores looking and reading the books. She saw them cuddle together on their couch as they watched favorite movies and recorded television programs. She observed their love, their intelligence and their kindness. 

Suddenly, she felt a tug on her gown. She looked down at a little soul with beautiful blue eyes staring up at her. “I want them”, he pleaded. She gazed at him with a thoughtful look. This is a boy who will love to read and collect books. He will cuddle with them to watch his favorite CDs and television shows. His love of trains will have him quietly playing with them for hours at end. He will love his bedroom and his nap times, and will continue to nap into his fourth year. He will love to spend time learning computer skills with his father. 

Gertrude reached down and picked up the little soul. “I think they will be the perfect parents for you, my boy. And as a Christmas gift to God and these parents, I will let you become a part of their lives in the month of His son's birth”. And she made the arrangements. 

As she showed God her choice, He smiled and kissed her gently on her brow. She whispered “All in your good time and wisdom”. And God smiled.

-- Eileen Manthei, January 15, 2013

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About the ALS Ice Bucket Challenge and Giving to a Good Cause

 Like thousands of others, I participated in the ALS Ice Bucket Challenge to raise money for ALS. If you aren't familiar with the challenge, the deal is that, once challenged, you have the option to either dump a bucket of ice water on your head and donate $10 to www.alsa.org, or skip the ice and make a donation of $100. As of today, more than $103 million dollars has been donated to the organization. More importantly, people are talking about a horrible disease.

For many, amyotrophic lateral sclerosis is better known as Lou Gehrig's disease. For me, ALS is also known as Ed Dobson's disease.

Ed Dobson was my first pastor when I moved to Grand Rapids, Michigan in 1999. It was a very large church and easy to find, so I thought it would be a good place to try to make some friends in my new city. I quickly got involved in singles ministry and met some of my closest friends. Prior to coming to Calvary, Pastor Ed was best known for his work with the Moral Majority and Jerry Falwell. After becoming disillusioned with politics, he moved to Grand Rapids, Ed ruffled feathers by becoming and early advocate for those living with HIV/AIDs in West Michigan. He became less concerned about power and more dedicated to mercy. Even though he preached to audiences in the thousands, he was still approachable to individuals. Lean and healthy, I remember being impressed by the way he lead hiking trips with young people from the church. Then, in 2001, he was diagnosed with ALS. 

ALS is a vicious disease, slowly taking away a person's ability to control their body, starting with large limbs--arms and legs--and eventually robbing them of their ability to move, swallow, and finally, to breath. It's a long goodbye. When Pastor Ed was diagnosed, he was given two-five years to live. He's been around for thirteen, and has made the most of these years when his brain is willing and his body is weak. He's written a couple of books, including Prayers and Promises When Facing Life Threatening Illness and Seeing Through the Fog: Hope When Your World Falls Apart, as well as several DVDs as part of Ed's Story. 

In the flood of posts and columns being written about ALS as a result of this challenge, the one that has stuck with me the most is the one by Bo Stern, who wrote "What An ALS Family REALLY Thinks About the Ice Bucket Challenge."

I highly recommend you read the entire post, but here's the take away: The Ice Bucket challenge is a fundraiser to be sure, but take the time to learn a bit about the disease, too. Here are her suggestions for "walking a mile in ALS shoes."

If you would like to experience just a tiny corner of an ALS life, I have a list of Empathetic Experiences for you. These are things you can do to walk for just a mile in ALS shoes. If you try one, take a little time at the end to consider that people actually living with the disease have a million miles more to go.

1. Pick up a 10-pound weight. Now imagine it’s your fork and move it from your plate to your mouth repeatedly without shaking.
2. Sit in a chair for just 15 minutes moving nothing but your eyes. Nothing. No speaking, no scratching your nose, no shifting your weight, no changing the channel on the television, no computer work. Only your eyes. As you sit, imagine: this is your life. Your only life.
3. Borrow a wheelchair or power scooter and try to maneuver quickly through the aisles at Walmart, without speaking. Note the way people react to you.
4. Strap 25 pounds to your forearm. Now, adjust your rearview mirror.
5. Using none of your own muscles, have your spouse or child or friend get you dressed and brush your teeth. Write down some of the feelings you have being cared for in this way.
6. Before you eat your next meal, take a good, long look at the food. Inhale deeply and appreciate the aroma. Now, imagine never being able to taste that – or any other food – for the rest of your life.
7. Put two large marshmallows in your mouth and have a conversation with your friends. How many times must you repeat yourself? How does this make you feel?
8. Go to bed and stay in one position for as long as you possibly can, moving nothing.
9. Strap weights to your ankles and climb a flight of stairs, taking two at a time. That’s the kind of strength it takes for someone with ALS to tackle the stairs on a good day.
10. Install a text-to-speech app on your phone or iPad and use it exclusively to communicate for one day. (Source: Bo Stern )

There have been criticisms of the challenge, for sure. That it's just a fad. That the ALS isn't a "worthy-enough" disease. That the ALS Association doesn't spend donations in the right way, the waste of water, etc. But here's what's good about the Ice Bucket Challenge: people are giving the money to help others. That's a win in my book.

When all the Ice Bucket buzz was filling up our feeds, I queried my Facebook friends:

If you could magically raise millions to cure or alleviate a disease or condition, what would it be?

Cancer. MS, autism, and mental illness topped the list of replies. Other responses included Alzheimer's, Crohn's, Marfan Syndrome, juvenille diabetes, congenital heart disease, MPS III, muscular dystrophy, lymphedema, and Prader-Willi. I've linked to organizations my friends know and trust.

Of course, traumatic brain injury is the condition I've lived with for the last ten years. I would love to see more money raised to education, prevention, early treatment for those who sustain TBIs, and assisting those who live with brain injuries. The organization we give to is the Brain Injury Association of America.

Oh, and in case you are interested, here I am getting soaked!

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A letter to my son on his first day of kindergarten

Dear D,

So, this is it. Today you officially start your academic career. It's your first day of kindergarten.

At 6:45 this morning, you bounced into our bed with your own charming alarm sound. You were ready to go! I, on the other hand, was not so ready to let you go.

I spent the night thinking of how, surely, it was just last week that we brought you home from the hospital. I thought of those early, exhausting days when we were first getting to know each other. The days of delirium. I was deliriously happy to finally have you safe in my arms after a hard pregnancy. And deliriously tired from nursing you every two hours around the clock to get you back to your birth weight. But we eventually figured things out and settled into a routine.

I thought about how you were so alert and curious even from a very early age. I remember pushing you around Target and how you would get so excited when you saw flash cards. They were your favorite toy and we spent endless hours together practicing as you would pull out your favorite set and ask to play. I'll never forget the day when  you were 20 months old and we were walking around downtown. You saw a sign and you ran to it, excitedly pointing to each letter and saying its name. You really took off from there. On your second birthday, you realized that the letters on your birthday cake spelled your name. By three, car rides got very interesting, as you would call out the words you saw on signs, and buildings, and roads...and pretty much everything. By four, you could read anything, but your favorite thing to read about was space. By five, you were reading to yourself, and already I miss hearing you read when you don't think I'm listening.

On the other hand, not everything has come easily to you. If you find something to be difficult, you are far too quick to give up. This is something we've been working on, and mommy and daddy remind you often that, just like John F. Kennedy said, "We...do the other things, not because they are easy, but because they are hard." So much comes easily to you, son, but you will feel more accomplishment and pride when you conquer the hard things. For the longest time, you were afraid of water. Now you love to swim and are getting better and better with each class. Doesn't it feel great to see how far you've come? And riding your bike. You had the hardest time figuring out those pedals. Now you can ride your bike up and down the street. We'll keep working on it, and soon you'll ditch the training wheels and be flying down the street--safely, of course!

I thought about all the walks in the park, our trips to Joann where you played on my phone while I shopped for fabric, our garage sale hunts where I gave you a dollar to spend but you rarely did because you charmed everyone into giving you the things you wanted.

I thought about our mommy and son dates to your favorite restaurant, Chick-Fil-A, and how now, whenever we got to a restaurant, it just doesn't measure up if it doesn't have grilled chicken, fresh fruit, and apple juice...and french fries to share.

I thought about the things you've loved: first Elmo, then Thomas the Train, and now NASA and all things space. I smiled when I thought about how last week, when we were hosting a college student from Moldova, you drew a five stage rocket as you lectured him on flight dynamics. I can't wait to see if your dreams of being a rocket scientist come true. Or even if you will still want to work on rockets when you grow up.

But mostly, when I think about what you will be like when you are an adult, I hope that you love God. I pray that you will thank God for the mind that He has given you, and not let your intelligence keep you from knowing Him. Many of the early space pioneers, both on the ground and in the atmosphere, were believers, and learning about the created instilled in them a greater awe for the Creator. I am so thankful that our pastor is a former rocket scientist, and has taken you under his wing, to answer your many, many questions, not only about the universe, but also the God who created it.

Source

It's a mommy's job to think about such things: the man you will be, the boy you are, and the baby you've been.

I thought about how, for the last six and half years, since I first learned you were in my tummy, how your well-being consumed my thoughts--where were you? were you safe? do you need to eat? drink? sleep? be changed? get clean? be held? As you got older and I could step away for a few moments, to go to the bathroom by myself, for example, you would still want to be near me and would wait, not-so-patiently outside the door, or, more often than not, inside the door.

Source

I thought about how this summer you have grown more independent. You were such a happy baby and toddler. You completely skipped the terrible twos and threes. But five has been the year of NO! as you have have learned to assert yourself and express your ideas of how the world should work. And you have such detailed ideas! I think that was God's way of preparing me to let you go to school!

You actually started school two years ago, at preschool in Miss Jodi's class. How I sobbed after I dropped you off that first day. And that was for just two and half hours, two days a week! But I didn't know what to do with those five hours a week without you! I ended up learning to sew so I could have a hobby to fill my hours. Last year, you went to school all day three times a week. It was a perfect arrangement. I had solid blocks of time to sew, but we still had two days of "just us" time. Today, though, we start a whole new routine. For the next thirteen years, you will be in school and I will be home, missing you and wondering where the time has gone.

Last week, we attended your kindergarten open house. Your new classroom is just down the hall from where you were in Pre-K, so you already know your school. Your new teacher was the other preschool teacher, and your classes often mingled. You know Miss H and she knows you. When we spoke to her as you were settled in corner reading a book, she told us she was familiar with your strengths and weaknesses, and was already talking with the other teachers about how to give you the best year yet.

So many of your friends from Pre-K are in your kindergarten class, so I know that you will have so much fun catching up with everyone. And as we left, you saw a little girl in tears, partly for fear of a new school, and partly because the class looked so fun she didn't want to leave. You gave her a big hug and said you would be her friend. My heart nearly burst with pride. I hope you are making her feel welcome the way your friends made you feel welcome last year when you joined the class weeks after everyone else.

D, You are going to do great. If you are anything like your mommy and daddy---and we know you are--you are going to continue to love school and won't miss me a bit. And that's just the way it should be.

Love,
Mommy

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Shameless Plug! I've been published again!

It's been a rough year and I'm still under the weather, so today's post will be a short shameless plug. I've been published again! 

Living with traumatic brain injury means living with loss. One of the losses I've learned to live with is that my career as a professional writer ended just as it was getting started. (I've published two books, Generation Ex and But I Don't Want To Go To Bed). So imagine my joy when a few days ago, I 

received this nice little package in the mail. 

Almost a year ago, a writer friend sent me an email alerting me to the fact that a new Chicken Soup for the Soul book was in the works. Because the theme was traumatic brain injury, and I was a writer before I sustained my TBI, she thought I might try to come up with a submission. 

My brain doesn't work on command the way it used it, but I did manage to come up with a story just in the nick of time. I was optimistic, but have worked in publishing (on both sides of the book), so I knew better to get my hopes up.

At the beginning of the year, I learned that my story was still in the running. It wasn't until just a few weeks ago that I learned that my book did in fact make the final cut!

 The big surprise was learning that my submission is the first story in the book!

Here's a sneak peek!

My story.

A little shout out to the blog.

If you are interested in learning more about what it's like to recover from and live with a traumatic brain injury, the book is available for sale on Amazon now. The book official releases on June 24.

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700,000!

You may have noticed that we haven't been posting much lately. I'm still dealing with some health issues, and circumstances have resulted in our month looking like this:

The states in blue are the ones we will be driving through this month. Three trips. Fifteen days on the road. Thirty states visited (plus Ontario, Canada!)

Our first trip was to Washington, D.C. for our appointment with the Dutch embassy to renew our son's Dutch passport.  Unfortunately, due to Niels being a new dual citizen, there is another pile of paperwork that needs to completed first. So, we will be going to D.C. again soon. We did have gorgeous weather for site seeing though.

The next week we were in the Toronto area for a friend's surprise birthday party and to drop off one of my favorite quilts yet to a friend and her super adorable baby girl.

Now we are off on an epic road trip so that we can go to my gramma's funeral (in Arizona), Niels' work conference (in Nevada), and the benefit for my dad and stepmom to rebuild their house (in Minnesota). Of course, all three events take place in the same week!

But then, we will be home all summer!

A Tribute to Gramma

Ten years ago--a few months before my first book was published and just days before the traumatic brain injury that would change my life--I wrote this about my grandparents:

My grandparents' marriage is ending. It's not totally unexpected. My 84-year-old grampa has been failing for several years. Mom called on Christmas Eve to tell me that hospice has been called to make Grampa comfortable. After many brushes with death, this time it's for real. Grampa's doctors—and all of us who know him—have been amazed by his perseverance. Every time we've been told to prepare for his passing, Grampa's heart somehow kept on ticking. Some has said it's my Gramma's iron will that has kept Grampa around so long. She's been known to say, "Leo, I'm not ready for you to go yet!"

My grampa and gramma have been together nearly seventy years. Seventy years! Can our generation even conceive of such commitment? Of course, they weren't all blissful years. My grandparents weathered war and trauma and heartbreak. Their marriage wasn't always a model of domestic peace and tranquillity. But in the end, what a beautiful love story! Anyone can love when their lover is lovable, but true love—really remarkable love—is when someone loves another with all they have, knowing that the object of their affection hasn't anything to give in return. In the seven years since my Grampa's heart started failing, my Gramma has become an incredible model of unconditional love to our family as she cared for him, cleaned up after him, laughed with him in his better moments, and yes, loved him.

A week ago, my gramma left this life. Like her husband before her, she surprised us time and time again with her ability to bounce back. Up until two years ago, she still lived on her own in her own house! When the end came, it came quickly, on her terms, after a week with all five of her daughters spent saying the things that needed to be said, remembering, laughing, and shedding tears.

I knew the end was coming and prayed that she would hold on until we were in town (twelve hours away) in two weeks. But she was ready and it's selfish to be sad when she had lived such a long, happy, healthy life.

What comforts me is that in her last days, she found comfort in the memory quilt I made for her last fall.

When she called to thank me seven months ago, she cried, "It's my whole life!" I had put minky on the back of the quilt because I thought it would be cozy during the cold Wisconsin winter after so many sunny years in Arizona. Instead, she asked for it to be displayed on the wall so she could show everyone who visited. 

When she was taken to the hospital for her final days, the quilt was taken down and wrapped around her so that those caring for her would know the vibrant woman that she was, not the frail woman in a hospital bed.

In a few days, our family will be driving to Arizona for Gramma's funeral. The last time I was in Arizona, she tried to teach me to crochet so I could make her famous scrubbies. 

After an hour, she snatched the crochet hook out of my hand and suggested that crocheting wasn't my thing! I was determined to find my own craftiness. (Hello, quilting!). Later in our visit, she was taken to the hospital, and I was able to spend several hours in her house alone. I had a feeling that it would be my last time there, so I took many, many photos of her home and her many, many pictures, most of which I had never seen before.

The last time I saw her, I had the images on my iPad and she was able to tell me the stories behind the photos. I noted the images that resonated most strongly with her, and used them on her quilt.

My gramma was many things: A game warden's wife in Northern Minnesota. Writer. Avon lady. She loved many things: nature, golfing, fishing, cards, crossword puzzles, lemon bars, leopard print, Betty Boop, and most of all, her family. She was the mother of five girls. Gramma to ten. Great-gramma to fifteen. Her most recent great-grandchild was born in January, and she was first to hold him. (Here's a sneak peak at the first baby quilt I finished this year).

Over the past few weeks my family's facebook pages have been filled with pictures that show my gramma's personality. A picture (or two) tells a thousand words, so here are a few thousand words about my feisty, red-headed gramma whom I love and miss very much. 

Linked to:

Just Us Four * My Fashion Forward Blog * Will Cook for Smiles