The "Checkbox"

This post was written back in April of 2021, a few weeks after Mark passed away.  I discovered recently that there were quite a few posts I forgot to ever finish, so I'll leave them unedited, and reminiscent of a time long ago.  It's crazy to think this was 5 years ago. I'm so proud of how far we've come. ❤️ 

One of the things that I've struggled with in a major, emotional way over the past three years or so has been how to check the boxes when I have paperwork to fill out. With Mark's stuff, it was easy: I just put that we're married, I live here, he lives there, and I'm his POA. There aren't many, if any, questions about what to do if you can't reach me. With kids, however, it's different.

I had Ryan's Kindergarten screening a week after Mark's passing (they require it in the state of Minnesota before kids begin Kindergarten), and for the first time, I got to (at least figuratively) check the "widow" checkbox. I didn't have to explain anything further, no questions, no long, drawn out explanation of the disease or the circumstances. No stares of shock and awe and disbelief. Just a simple, "I'm so sorry", and we moved on.

It was such a relief.

Having 4 kids in the school system and having to write out an explanation as to why they had a Dad, but they couldn't communicate with him, and if, by some stroke of insanity, he showed up and wanted to take them, he could not because he wasn't fit, and how it was because he had this form of dementia where his personality changed and it was awful, and just this whole explanation as to what was going on in our lives, and on and on and on and on...freaking exhausting. Now, do that 4 times every time the kids start school or join an activity or switch childcare or whatever else.

On that day, it was just this acknowledgement that I'm a widow, and that's it. No more, no less. No explanations. Just check that box, and have people understand that it's just me and them.

I've spent the last 3 years feeling like I'd best benefit from a widow support group, but feared they'd shame me the heck out of there. And, truth be told, because no one understood, truly, what was happening, they would have. But I needed that same emotional and physical support that widows did. I am so thankful my therapist recognized it as such and helped support me through the past four years of learning to live with the loss that had already occurred.

At the screening appointment, Ryan walked up and said, "My Daddy's dead" and then climbed into my lap and asked about the picture of the stop sign on a neaby closet door. When the lady who was asking about his physical health asked him how that made him feel, he said "sad" and then moved on. We're no longer walking around in this state of confusion. Our past and our future are significantly more clear right now: Ambiguity, at least in the form we've been experiencing for so long, is no longer a part of our lives.

For the first time in the past five years, I felt understood by checking that box. I don't feel different as a "widow" via FTD when I lost him years ago than I do as a widow in the eyes of everyone else now that his physical body is gone. Did I bawl my eyes out as I held him on March 22nd? Of course. Did I also completely lose it that Friday when I held his hand and looked at this man I had loved for so long in his casket? Absolutely. Am I sad and grieving our loss still? You bet! But it has been a long, long journey, friends: Many of you have lived it with me for the past five years. For once, the past five years of my life can be summed up with a freaking box to check. No explanation.

Ryan passed with flying colors, by the way. He's a smart little kid, no doubt, and it still astounds me that he's in the 90th and 95th percentiles for his age range for height and weight. I'm excited for his future. I'm also relieved to finally just be able to say that Daddy's in heaven with all those who went before him and whole in body and mind and soul.

I thought it'd be a harder, more profound moment, in which I'd fall into a puddle. Instead, at this point, I'm savoring the simplicity of it.

Never before have I been so grateful to NOT have to talk.

In the Public Eye - Speaking Out About FTD

As a little girl, I was one to observe things before jumping right in. With 4 brothers and a sister, it didn't always serve me well to jump the gun before I knew what was going on. (I mean, unless it was pizza night, in which case if you didn't fill your plate with significantly more pizza than you could eat in a week, you'd not get any). Jumping in before you knew what was going on could sometimes put you in a precarious situation.

I think it's safe to say that I am a BIG fan of pictures and telling stories and blogging and digital scrapbooking. I LOVE all those things, and my kids are so accustomed to pictures and videos that they have begun to actually ASK for those things regularly. Even Kins has figured out how to take pictures with my phone even if she is unable to unlock it. However, telling the story of our lives until this point has been a very private thing for me. Most years I don't even post our annual family video. 

 I like to work behind the scenes as something that is enjoyable for our family. The scrapbooks are such treasures, and it brings me such a sense of accomplishment and pride to see the looks on my kids' and husband's face when they get a new one. I love telling our story...for us.

These past handful or so of years, however, my privacy, has been challenged a bit. I mean, writing a public blog will do that to a person, but I've had this blog public for 20+ years, and until the journey to Mark's diagnosis of bvFTD, no one has cared about it: It was for me, and I liked that. 

My followers have increased from a handful to a couple hundred over the course of the last 7 years, and while I don't really think that has changed anything from a content perspective, it certainly has left me a little more cautious as far as details, as it's a little intimidating to realize that not everyone has good intentions.

Being in the public eye is hard sometimes. I scrutinize myself far more than enough for everyone else (trust me). I've always been one to look at things from all perspectives, never take someone's word for the way the story unfolds, knowing that there are always at least two sides to a story. 

 However, the difficult part about my story these days is that I won't ever really know what the other side of the story is. That not knowing, that guilt...it at times just unnerves me. I've always been one to accept blame for things I have done wrong, and then work to change them, but although every single health professional has assured me that there was nothing I could have done or said could have changed Mark's outcome, it's always in the back of my mind. 

The difficulty with being in the public eye is that all those thoughts I've thought myself, all it takes is one person to agree with my wishy washy, FALSE thought to send me into a tailspin of doubt and questioning myself all over again.

In truth, I think probably 95% of my followers and friends and family give me more credit than I give myself; that may be a conservative estimate. But in fairness, the small amounts of people who are judgy and hurtful, who could not fathom what I've been through...it still stings.

I have always been one of those people who, if when I die, I am known as a good wife and daughter and mother, who points my children and family towards Jesus, that would be far more than enough. But with all this change to our lives with this disease, it's difficult to envision a life at this point where I don't stand up and help facilitate change. That being said, the thought terrifies me!

I think back to the story of Moses in the Bible, and then chuckle to think about the conversation in Exodus 4 where God calls Moses to go tell Pharaoh to let the people go, and Moses is all, "Ummmmm....I'm not so great at that speaking thing...do you even know who you're talking to, because I'm not probably the guy you want to have to straighten this whole thing out..." And here I am sitting in the corner, silently raising my hand and nodding along. And, I mean, God goes on and on and on, saying, (super paraphrased here, in case you were wondering) "Moses. Seriously. Stop making this all about you. I'm not asking YOU to go, I'm telling you to allow ME to go. With you. I'll take care of it. I've got you! Just do it already!"

Why am I so scared of moving forward with this all? What is holding me back? I've thought about that a lot, honestly, and I think a big part of it is that I'm scared of what it might do to my family.

I'm the person who, when Mark pulled up for our first date in the MMC, I knew he would NOT be the guy I would ever consider marrying, because he was WAY to flashy, and flashy is not me. I'd consider my style "classic" for the most part. When I eventually had to start driving the MMC (Mark's Monte Carlo, for those of you who hadn't heard of it before haha) to Sioux Falls for work after a scary incident with MY significantly older Monte Carlo, it would drive me nuts to stand out and have people revving their engines and trying to race me. Buying a RED Grand Prix shortly thereafter unnerved me as well, because I'm more of a white or gray car kinda girl. I like to blend in. I like to keep to myself and do my own thing. I cherish my privacy.

I guess I'm scared that everything will change for the worse. I'm scared that my kids will suffer as a result. I'm scared that someone is going to show up on my doorstep, or creep into my house in the middle of the night. It's not something that necessarily keeps me up at night, but it's definitely something that I've figured into my calculations as to whether or not to accept a speaking engagement or be on TV again. 

When you step up and do these things, the fear is not, for me anyways, whether or not I will speak truth or have the wrong words to say: I know God goes before me. But it's where my physical insecurities creep up, and I get self-conscious again, wishing I'd been better with my diet, or worn something different, or that the camera hadn't taken a shot at that angle. But more than that, I get fearful that my kids might be held to a different standard, or that my parenting style will be criticized. I'm afraid that maybe a child trafficker will see me out and about and realize I'm completely outnumbered by my crew and come after my beautiful babies. Again, not crippling anxiety or anything, but sadly, the world we live in causes me to have to consider these things.

But, being on the front page of the newspaper or on national tv, when you walk into a doctor's appointment for the first time at the ENT's office an ad they already know who you are because they saw you on TV...along with the anesthesiologist for your sinus surgery, and random people you run into in stores out of town...that's.not.normal. The hard part about putting yourself out there is that people feel like they know you already, and you don't have any clue who they are.

Heck, most days I don't even know who I am.

Will I become brave enough to speak up again?  Perhaps.  In the meantime, I continue to work behind the scenes, supporting my dear FTD spouse friends who are still in the middle of the fire, as well as those who are also on the other side, facing grief not only if their own, but I'd their ever growing children.

It's all so hard.