A Year in….

4 Comments

It’s been a little over a year living in Florida. We have met a few people, and they have brightened our days. Bill’s stuttering and tics have reduced significantly, but his anxiety has increased. I would still consider it an improvement. We all know that there is no recovering from early onset dementia, but finding ways to lessen the most distressing symptoms feels like a step in the right direction.

He is currently in Michigan helping his mom and dad who are having some health issues. It feels right, as he has the time, and he is at a stage where he can still help. We have no idea how long that will last so we will take advantage while we can.

I’m going to be honest, I am tipsy. I don’t drink much, usually no more than two, and I hardly drink at all anymore, but for some reason I blog best when I am feeling relaxed, and subsequently more honest. I don’t hide behind the “I’m okay” persona when I’ve had a drink or two. Raw honesty at its finest.

Most of the time I am okay, but sometimes life gets to me. Why is it me who gets Crohn’s, a daughter with mental illness, a son with Aspergers, and a husband with dementia?! Why do they get those things?! They don’t deserve them. They are good people. How does God determine who gets these things and who doesn’t?!

At the same time, we’ve lived in Shanghai and traveled Asia. My husband and I have traveled to Europe, South America, and Africa as well. We have been blessed. Is that the trade off?! Is life just a trade off of blessings and hardship?! Or are the hardships blessings as well?

We have recently started attending a nondenominational church. It is strictly bible based. It has been a blessing for our daughter, who had some bad experiences at a Catholic school in the past, and was feeling disenchanted with being a Catholic. She has started attending youth group and church every week, and journaling in her bible . She has made a complete turn around, and we are so very proud of her. Faith is so important in life. Having something, someone, to believe in, can make all the difference.

Before I started writing this, my daughter told me… “Don’t worry, mom, I’ll keep an eye on you,” just as I have kept an eye on her when she has been going through a difficult time, and sometimes that is enough. Knowing that you have taught your kids to consider others and that they have the compassion to look beyond themselves.

In the end, it’s a win. Our kids have grown into caring, considerate, intelligent, and loving adults. We have been blessed with a happy and (mostly) healthy family. We have faith and a love for Jesus. We are together, sometimes at a distance, but always in heart.

We are as God has always intended. We are at his mercy. It is all in his plan.

.

Reflecting Sunlight

Leave a comment

It’s been quite a while since my last post. I’ve never been able to write on a schedule. I can’t force the words. Sometimes though, I see or read something that hits me in the pit of my stomach, or makes my heart bounce, and once again it is time.

This year has been a mess all around the globe. There’s really no other way to put it. A year we never saw coming; a year many of us never could have imagined. I wish this was the first time I have experienced a year like this, but I have had a number of “messy” years. I don’t know if it’s more than the average person. I don’t know how many people out there feel the same as I do. However, for me, this is just one of many. 

Sitting at home, hour upon hour, for days and days, waiting out the height of the pandemic gave us all time to think. Reconsider our surroundings; reevaluate our lives. For some, it may have been too much time, but for me it was just enough. With mental illness, dementia, and Seasonal Affective Disorder in the house, Michigan winters were hard on all of us. Overcast, snowy, gloomy days for too many months of the year. It was impacting the heath of the family, especially my husband, and it was most definitely affecting his life expectancy. This is where we had been living for most of our lives though, where our families live, where we have made most of our friends. If we moved we wouldn’t know anyone. We would be starting out all over again. Change is a scary and uncertain thing. The fear can hold you back, but if you rise to the opportunity, it can also help you live. 

Those past experiences, the “messy“ years, have been a blessing to me. They’ve taught me to be brave, a quality that I did not possess as a child or young adult. I have come to learn that I am strong, and stepping out of my comfort zone can be exhilarating. Empowering. Even life-saving. 

At the end of April we took the leap and started researching online for a warmer area. A sunnier location with no snow, but plenty of rolling waves and sandy beaches. We were about as close to throwing a dart at a map as you can get without actually doing it. We went with our gut instincts and picked a city and state, one that we had never considered before. We started looking at real estate, narrowing down the area where we wanted to buy. Within ten days we had put our home on the market, and with the help of an amazing agent, placed a bid on a house we had never stepped foot in. I took a quick trip south for the inspection and to scope out the new neighborhood, and by the end of June we were moving into our new home. It was scary and exciting, and it was the wisest decision we have made in a very long time. We are embracing the change. 

This year has been a mess, but we are making the best of it. I have learned from my past, and will continue to strive to make this life full of as much joy as possible. I recently read a passage in a book, Where the Crawdads sing by Delia Owens, “Autumn leaves don’t fall; they fly. They take their time, they wander on this, their only chance to soar. Reflecting sunlight they swirled and sailed and fluttered on the wind drafts.” I think this may be the most moving passage I’ve ever read. To me, it is a life mission. It is how I strive to live. 

This is the only life we get. Reflect the sunlight. Choose to soar. 

There is an Enemy Within, Yet He Continues On…..

4 Comments

I have waited so long to write about this that the fire within has settled. I am prepared for the long haul, but also, not prepared at all. How do we prepare for the emotional, mental, and physical challenges that are to come? This is not a situation that we ever could have imagined. We have been slowly adjusting, but it is still surreal. My 52 year old husband, my intelligent, loving, funny, thoughtful husband, has Frontotemporal Dementia (FTD).

Looking back, symptoms may have been presenting as early as 2012. What we originally thought was depression, was probably the beginnings of this awful disease. By 2015, it had progressed into difficulty with word recall and minor memory issues. His doctor tested for every possible medical cause, and eventually sent him to a neurophysiologist. Three years ago this fall, that specialist told us that my 49 year old husband may have early onset dementia.

It was hard to believe that it was possible, but in the back of my mind, I knew it was true. He had been forgetting things I told him more than usual, and he had seemed a bit off for a while. The tests showed that he had a very high intelligence level, but his cognitive abilities were not matching up. By fall 2016, he had further testing at a memory clinic, and we were told that there was a high probability it was FTD. He is being treated accordingly, but there is no cure.

In the last three years we have been making as many memories as possible. We have traveled to Europe, Africa, and South America. One summer we took a minor league baseball road trip, in honor of his favorite movie, Bull Durham. We stopped and visited with many friends along the way. Friends we hadn’t seen in up to 25 years. We took a weekend trip to see one of his favorite football teams, the Kansas City Chiefs. We are living out our retirement dreams before we can’t anymore.

Two years ago, he went on disability from work. It was not in his plans. A disease he has no control over makes him feel like less of a man. He thinks he cannot take care of his family like he used to, but he has no idea how much he does. He goes to yoga most days, and I go with him 3 to 4 times a week. We were told it might help slow the progression of the disease. It has, and along the way it has also helped me to get in shape and strengthen, both mentally and physically. He grows a vegetable garden in the summer, and with his green thumb, we have an abundance of fruits and vegetables. He has taken up much of the family cooking and baking, making me look like a amateur after almost 30 years of marriage.

There are many ways to try to slow the disease. Memory games, puzzles, exercise, and small motor skill activities are a few. We will do anything to get as much time as we can, so he tries them all. He taught himself to knit last December, and by January he had made each of the kids a scarf. Intricate scarves with difficult stitches that look amazing! By March, he had finished a multiple panel afghan, and by May he had made me a varsity-style hooded sweater that looks like it was crafted by a professional. Last week he started knitting me socks. He has set the bar so high, I’m hesitant to even try to learn.

Unfortunately, he can’t do everything he used to. Over time, he loses the ability. We have seen these changes. They are happening slowly, but they are still happening. We might be able to slow the roll, but we cannot stop it. There is one thing we won’t let it do though, and that is bring us down without a fight.

FTD has brought us to a place we never thought we’d be. We have lost, and we have gained. It is a blessing and a curse, all at once. We are experiencing retirement in our fifties. We have been blessed to travel around the world. It is all temporary though. One day, and we have no idea when, we will be living a nightmare.

There is an enemy within him, and it is Frontotemporal Dementia.

Embracing the “Soul” in “Soldier On”

Leave a comment

We have had many blessing in our lives, as well as numerous challenges. We have been lucky to overcome quite a few, and wish we could overcome them all. Sometimes you have to brace yourself, and do what you can to make the best of what you have, and of what is to come. This has been my goal throughout the challenges in my life. Since the first, my diagnosis with Crohn’s in 1998, I have tried to embrace the positive while trudging forward. Today, I’ve decided to focus on a line from a song by “The Script,” titled “No Good in Goodbye, ” but flip it upside down, and prove there is a soul in soldier on.

For many years I have wanted to start yoga, hoping it would help in one of the many challenges we have had. I bought a few DVDs at various times and tried to practice in the living room, but it didn’t seem to do much for me. The thought of going to a class and stumbling around for an hour in embarrassment was not a great motivator, and I really thought it would be the same as the DVDs. I always thought of yoga merely as a way to help your body and mind relax. Slow moving stretches with some balancing moves that would help blood flow, respiration, and flexibility. In my mind it was not a serious workout, and definitely not an essential in life. My my, how things change.

When Bill got sick we heard from, and read, many sources claiming that yoga may help to slow his progression. In an attempt to do anything we could to treat his condition, it now seemed worth the time, money, and awkwardness to try a class. Since Bill was no longer working, we could go to classes mid-day instead of early morning, or later at night, which was always a motivation obstacle for me. We bought a Groupon for a few classes and then felt locked in to giving it a shot.

I went to our first class in full makeup, as it was in an upscale location where I thought I might feel self conscious. Our class was taught by a former Golden Glove boxer, in a dark and somewhat hot room. It was a mentally, and physically, painful jumble of arms and legs, where I cursed our instructor in my head repeatedly, and spent a good amount of time lost and reverting to child’s pose. We left absolutely soaked from head to toe. Makeup streaming down my face. Hair soaking wet. Defeated. Stinky. Sore. Exhausted. Surprised. Invigorated.

We continued once our Groupon ran out, and have spent the last seven months going three to four times a week. After about a month of going, I stopped silently cursing the instructor, we no longer looked like newbies in class, and we were used to leaving the studio looking like drowned rats. In the months since we began, Bill’s health has been fairly stable, my platelets (Essential Thrombocythemia) have been down, and our body strength is up. If you had told me at the beginning of this year what a difference yoga would make, I wouldn’t have believed you, but the benefits carry through every part of our lives.

We feel more settled, and calm, and know what to do if we are not. We have found yoga breathing comes in handy occasionally, a few daily stretches feel great, and for the first time since early childhood…..I can touch my toes in a forward fold! We continue to remove anything and everything negative, hateful, and/or toxic (that we have control over) in our lives, and try to find happiness in every way we can. We only have one life and believe in living it to the fullest, no matter the obstacles.

I hope we can continue yoga, and that it will help us cope with what is to come. As long as we are able, and with the help of friends, family, and God, we will continue to find the “soul” in “soldier on.”

Hidden Blessings

2 Comments

Sometimes I wonder why we are burdened with misfortune. Sometimes it seems like it happens more than it should. Other times I think about all of the blessings we have received, and wonder how we got so lucky.

As I have written in previous posts, between 2000 and 2002 I was severely ill, and almost died as a result of Crohn’s Disease. I have often said that due to that period of time in my life, I became a much stronger, happier, and confident person. I truly believe that everything happens for a reason, and is preparing us for our future. There are always hidden blessings.

After life-saving surgery for Crohn’s, we decided to adopt our beautiful daughter, Carleigh. I would never have been so brave to put my trust in a foreign government and travel to China, if it wasn’t for my Crohn’s, and the realization I had to live life to the fullest and not be afraid to step out of my comfort zone. Once we brought Carleigh home, and the opportunity arose, we moved to Shanghai, China for 4 years. We would not have experienced life abroad and traveled to countries all over Asia, giving our children such unusual life experiences, if not for the disease I had, or the adoption we were honored with. There are always hidden blessings.

If not for our adoption, we would not have had the unfortunate experience of having a bullied child attempt suicide. There is nothing good about this. To even think that is unimaginable. However, if not for that incident, we would not have found the most amazing therapist, who sees three out of four of us, while we go through the medical issues that we are now experiencing with Bill. I also would not have the strong, confident, compassionate, thoughtful daughter who has learned so much through her difficulties. There are always hidden blessings.

If not for all of the travel in Asia, Bill and I may not have caught the wanderlust “bug” that we treasure, and would not have had some of our recent adventures both before, and since, news of his health issues. We have already traveled to San Francisco, Las Vegas, Anaheim, Puerto Rico, Spain, Italy, New Orleans, and went on an East Coast and Midwest minor league baseball tour. Next month we are headed to Kansas City to see the Chiefs, his favorite football team, and if all goes well…Morocco in February with a 24 hour stop over in Paris. As long as money and health hold out, we are hoping to make it to Greece and somewhere in South America in the next few years. He is unable to work right now, and we are moving up the plans we had for retirement. If not for this unexpected health complication, we would not be able to spend every day together, and travel the world making memories. Sometimes these unfortunate events in life remind us to appreciate every minute that we have. There are always hidden blessings.

It is undeniable….life hands us obstacles. I deal with them like I am putting them through a colander. All the big bad stuff stays inside the wire mesh, and I do with it what I must, while the blessings trickle out into a bowl for me to discover and appreciate. Even when I couldn’t initially see them, they were there. If there is one lesson I have learned in this life, it is that there are always hidden blessings.

I hope you discover some beauty in the depths of a terrible situation and embrace it. Every individual is responsible for creating their own happiness. Love life through the good and bad. Finding a ray of light in a time of darkness can make all the difference. There are always hidden blessings.

Fifteen Years Ago Today

2 Comments

We all remember where we were and what we were doing when something unusual or shocking happened. So many events or memories go in and out of our brain, but others really stick. Where we were when President Reagan was shot, what we were doing when the Challenger exploded, the events of the morning of 9/11. Some events are more personal, your wedding day, the death of a relative, the birth of a child. One of those memories for me was 15 years ago today, August 14, 2003. It was the Great Blackout and it took out power in Detroit, New York City, Cleveland , Toronto, Ottawa, and many other smaller cities.

The morning started out with me taking our 2 year old cat to be put down. He was an awesome cat. He was also very ill. He had reoccurring bladder stones that were very painful for him. He had already been through one surgery, and was headed for another. Unfortunately, in his short life he had chewed through 45 phone and electrical cords. He’d even been shocked by one, but that wasn’t the last. Do I find this a coincidence? Great Blackout….Rudy going to Heaven? Absolutely not. That was Rudy’s final farewell. His last dance. His parting shot. Sorry people. He was a stinker. Anyone that knows me, knows that that is something I would do. I loved that little guy.

I think we ended up being out of power for about five days. Food went into coolers, solar powered lights went outside in the morning, and came back in at night. Thanks to their flat tops, they were the best and safest way to light the house with young children. Coffee was traded for the use of a coffee maker in a house with a generator. Food was used as quickly as possible. Anything that could be grilled. Chicken, hamburgers, steaks, fish sticks…..yeah, the last didn’t work so well.

Gas was taken from cars and put into generators, as gas stations were without power, and the very few that weren’t had mile-long lines. Mobile phones were dead, E-readers didn’t exist. There was nowhere to go to escape as power was out EVERYWHERE. Many hours were spent outside. Playing board games, reading a paperback, chatting with neighbors.

Fifteen years ago today, the Great Blackout happened. It was actually kind of awesome. Sometimes when you take away some of those things you have become dependent on, you see what you are missing. It’s a great reminder of what is most important in life. Family, friends, community.

Now that I think about it…..maybe that’s what Rudy was trying to show me all along…..

Life is Too Short to Sit on the Porch

Leave a comment

Last December we had to say goodbye to one of our miniature dachshunds. She was old, and had been abused before she came to us. We gave her 9 good years, as she did us, and I’m glad for that. She was a sweetheart, and I miss her often. Norah, our other doxie is 11 and still going strong. She had been growing accustomed to the quiet life that she and her senior “sister” enjoyed, and I’m sure she misses her, but with no more fighting for mom’s attention, she was in her own version of heaven. Unfortunately, that didn’t last long.

Little did Norah know, Bill and I had been keeping an eye on PetFinder for a puppy to add to the family for several months. Not long after BoneZ passed we found what we hoped would be our newest family member, Darwin Atlas. We adopted Darwin, who is an Australian Shepherd/Australian Cattle Dog mix, when he was 11 weeks old. He is full of energy and very jealous of anyone who takes my attention away from him. I’m not sure Norah has completely forgiven us yet.

I love Darwin. He is feisty and curious, handsome and smart, but I’m pretty sure he only loves me because I have opposable thumbs. He spends his days flopping toys into my lap to play Tug of War, or to throw out for him to catch. All day. Every day. If I let go of the toy, he looks at me sympathetically and flops it back onto my lap. “Poor mom dropped the toy. I’ll help her.” If that doesn’t work, he will yip in the highest pitch he can achieve (in case you’re curious, it is impressive) until I can’t stand it anymore and I throw it again. I told you he’s smart.

Those thumbs are also useful for filling his food dish, although I’m sure he’s not against eating it right out of the bag, filling his water dish, putting on his leash for a walk, and for gently chewing on when bored.

Someday I’m sure he will love to snuggle with me on the couch without any demands of play. Maybe one day he will protect me from danger without a toy in his mouth expectantly waiting while I fight off an assailant. Maybe one day……but for now I’m just a pawn for his endless games.

It’s fun to have a puppy in the house again, much to Norah’s chagrin. He keeps us busy, and that’s never a bad thing. He’s full of life and reminds us not to take anything too seriously. He’s reminding us to love hard and play harder.

Life is too short to sit on the porch.

Hold On

2 Comments

It’s has been a very long time since I have written a post, but there has been so much I have wanted to say. Although I will still not divulge all, for my husband’s privacy, I will give you a glimpse into what has caused my delay. This post is titled “Hold On,” in honor of Sarah McLachlan’s song of the same name on her Mirrorball album. I heard it for the first time in years yesterday and it spoke to me so deeply that I can still feel it resonating within me today. The words are as follows:

Hold on

Hold on to yourself

For this is gonna hurt like hell

Hold on

Hold on to yourself

You know that only time will tell

What is it in me that refuses to believe?

This isn’t easier than the real thing

My love, you know that you’re my best friend

You know I’d do anything for you

My love, let nothing come between us

My love for you is strong and true

Am I in heaven here or am I–?

At the crossroads I am standing

So now you’re sleeping peaceful

I lie awake and pray

You’ll be strong tomorrow

And will see another day

And we will praise it

And love the light that brings a smile across your face

Oh God, if you’re out there, won’t you hear me?

I know that we’ve never talked before

Oh God, the man I love is leaving

Won’t you take him when he comes to your door

Am I in heaven here or am I in hell?

At the crossroads I am standing

Now you’re sleeping peaceful

I lie awake and pray

That you’ll be strong tomorrow

And will see another day

And we will praise it

And love the light that brings a smile

Now you’re sleeping peaceful

I lie awake and pray

That you’ll be strong tomorrow

And will see another day

And we will praise it

And love the light that brings a smile across your face

Hold on

Hold on to yourself

For this is gonna hurt like hell

My husband continues to be by my side. I love him more than I could ever have imagined possible. We just celebrated our 28th anniversary. However, as we all know, life throws obstacles, and the best made plans are upended.

Bill is 51 years old, and has been the picture of health for most of his life. I was always the one sick, Crohn’s being my biggest health concern, as discussed in previous posts. Recently the situation has flipped, and it has thrown us for a loop. It is not cancer, nor mental illness, and that is a blessing, but it is still a very large obstacle. The kind that knocks the wind out of you. The kind that moves you to readjust your bucket list timeline. The kind that reminds you of how precious life is. The kind that forces you to count your blessings. The kind that changes everything, and nothing at all.

The love of my life is fighting a disease that he shouldn’t have to, a disease we never expected, a disease that came out of nowhere and slapped us in the face. and honestly…..it hurts like hell.

“Losing” Mini Me

Leave a comment

I’ve been away from the blog for quite a while. I have had plenty of subjects that are worthy of a post, but some I am not comfortable sharing yet, and others were just not striking any deep resonance within me to write about. In a way this is good because it means nothing especially terrible has happened. Plenty of great memories have been made in the last six months, including a husband and wife trip to Spain and Italy, and a family trip to Philly, Stone Harbor, NJ, and NYC. At some point I’m sure I will post about these wanderlust travels. Today, I want to talk about our youngest son. My taller-than-me male duplicate. My mini me. 

Brennan turned 18 in June. He graduated from high school in May with his International Baccalaureate degree and a departmental award in History. He is such a bright kid. His book smarts far exceed mine. He loves to learn, and really enjoys physics and history. I am one proud mama. We must have done a few things right along the way because he has grown into a wonderful young man. We have been preparing him for this moment his whole life. I knew it was coming, but time goes too fast. On August 23rd, We moved him into his college dorm. I had to say goodbye to my little boy. My mini me. 

We have been fortunate because our eldest, Ethan, has been commuting to college while living at home. We still get to see him every day. We know where he is most of the time, and we know he is safe when he comes home at night. I knew It’d be hard when the first one left, I’m sure it will be hard when the second and third do, but you never really know how it will feel until they are gone. I tell myself we are lucky. This is a good event. a GREAT event. We succeeded, HE succeeded, but I miss my boy regardless. I miss my mini me. 

It is getting better day by day. I even go a few days without texting him now. I try to give him space. Space to grow, to learn, to thrive. The nights are the hardest. I think it’s because even if he were gone all day before, he always came home at night. I don’t know where he is, what he is doing, or if he made it back to his dorm at night anymore. I have to rely on what we have taught him, the decisions he makes, and God’s protection. Stay safe, my mini me. 

I love you, Brennan. This house will never be the same, but this world will be better because of you, and I’m proud to be a part of it. You be you, my gift from God. My mini me.