For such a tiny word, “if” can bring on monumental feelings. I know this all too well. “If” was actually a motivator of mine for doing everything, being everything, knowing everything, and fighting for everything I could, with what I could, for Tom.

“If” can bring on such guilt and regret. It can keep us in a space that is not healthy. When I lost the twins and then our son in the second trimester, I was consumed by the “what if’s”. What if I would have known more about a twin pregnancy and the signs of preterm labor, “what if’ I could have been a better advocate for them. “What if” I understood that Doctors are not all knowing and fell back on what is typical/normal or how their own experience could bias them in the care of patients. “What if” I trusted my gut more. I spent 10 years doing this until I got help and processed their losses. In my grief journey with the babies, I learned that sometimes terrible things happen. I learned that I did the best I could with the information I had.

When Tom was diagnosed, I used the experience of losing the babies to adjust how I went into his diagnosis. I vowed from the very beginning, that I would do whatever I could so that in the end, I would not “what if” myself for the rest of my life. Let’s be honest, do you think my OB was kept up at night for 10 years doing the “what if”?

I learned what I could. I spoke up when something didn’t seem right. I listened to that inner voice, which I would later refer to as my spidey sense, when it would tingle. I did not just accept the answers or suggestions of the medical community without doing my own research or asking lots of questions. I honestly didn’t care how I came off to them or anyone else because in the end, it would be me who would deal with the aftermath of ALS, not them. When I heard I was being “too much” I knew I was on the right track.

I took this approach for everything. When ALS made getting out harder for us, I got creative and brought the world to us. Others helped in that as well. We had two amazing concerts in our home thanks to a non-profit in my area called Swan Songs. I arranged a petting zoo to come in for the afternoon. We celebrated ever big and small holiday by decorating the master bedroom where Tom lived. I put a window bird feeder on the glass french doors so Tom could watch the birds in the backyard, and at one point a very determined squirrel that learned to use the nearby birdbath to launch himself into the birdfeeder. We even hosted a 70’s themed party in the backyard with drag queens that Tom and I actually missed thanks to a trip to the ER when Tom developed kidney stones, but the party continued.

I didn’t want this side of ALS to be filled with the “what ifs”. I applied the lessons I learned with the babies to Tom and ALS. I became the person I needed to be for him and our family. Do I struggle with “what if’s”, yes, there are some but not the ones that will keep me stuck in grief. I can say, I loved and gave Tom everything I could. I saved nothing for myself during the ALS years because it was all for him so I could emerge without the guilt or regret that can come with the “what if’s”. I paid the price for that and have spent the 2 1/2 years since his passing working on myself. There is so much more work to be done but I am living this life, like I did with Tom during the ALS years, in a way that when things are all done for me and I change my address as my Grandma used to say, I will have no “if’s”. I will have lived this second part of my life to the fullest. There will be no wondering about it.

All my love,

Lara

Before Tom died, I cleaned out many of his clothes and had quilts made. Five to be exact. For Trey, I had one made from Tom’s military uniforms. For his parents and sister, quilts made from Tom’s dress shirts, ties and military uniforms. For me, shirts, ties, military uniform and the dress I wore on our first date in July 1989. I never could explain why I hauled that floral summer dress around all these years, but I found a home for it in the quilt. So when Tom passed, I had already cleaned out many of his things, but not everything. There are still some clothes left in my closet, his baseball hat hangs in my closet as well. His wallet, phone, and glasses live in my night stand and his razor still sits by the sink. I finally unplugged the razor almost a year ago, but could not bring myself to remove it. As I was getting ready and cleaning up my counter this morning, I kept looking at the razor.

Something so silly, like an eclectic razor, can bring on a flood of memories. When Trey was just a baby, and Tom would get ready for work, Tom would hold the buzzing razor in his hand and touch Trey’s little chubby cheeks with it. Trey would laugh and laugh at his silly Daddy. You know the kind of baby laugh I am talking about, full-on belly laugh!

There were times when Tom would get up and get ready for work and I would grab our coffee, and we would chat as we would get ready for work. As I sipped my coffee and put on makeup, he would sip his as he shaved. So many times, I would stop and just watch him shave. I can see it even now, how he would hold his chin or mouth as he shaved, careful not to go too fast to cut himself. He would inevitably stop and start back and ask me with those beautiful green eyes and say, ‘What”? My response was always like a swooning teenager, “Nothing, I just love you.”

Then ALS came into our lives. When Tom found it hard to turn the razor on and grab it, I would do that for him. I would place the razor between his hands and he would use both hands to shave. I started helping him shave when even holding the razor became too hard. When he became fully paralyzed, shaving him became part of my morning or evening routine. Shaving him allowed me to get close to him and whisper my “I love you’s”. It allowed us to be intimate in a different way.

The idea of the razor holds many memories for me, and yes, it is just another item that has been left behind. When do you remove these reminders of the person you loved and lost? The answer I give is the answer that is right for me, which is when your heart doesn’t ache at the thought of seeing the item gone. This morning, as I was straightening up the counter, I wiped off the razor and moved it to my bed. I will place it in a box with some of Tom’s other things that I haven’t had the strength to get rid of permanently but need to see if my heart can live without.

That’s how this widow’s life works. It seems like you are constantly testing the waters of what you can part with and what you can’t. I wonder what it will look like next year and what remaining things I will be able to part with. I have a spare bedroom stuffed with his medical stuff that needs a good culling out. The problem is, my heart just can’t do that yet, so maybe that will be next year’s goal!

All my love,

Lara

After weeks of feeling optimistic about Christmas, I’ve hit a wall. It’s as if the weight of it all has caught up with me. Just a few days ago, I wrote a post on Facebook about hope and Christmas, but today, I find myself in a different place. This is grief, and it’s part of my journey.

As I began preparing for tomorrow, I noticed myself slipping into a state I can only describe as a funk. I’ve been trying to figure out what I’m feeling, but the truth is, I’m not sure I feel anything at all. It’s not sadness, but I do miss Tom and the life we shared. It’s not anger, but I despise ALS for shattering our lives and taking my husband. It’s not fear, but the uncertainty of the future fills me with dread—especially knowing the future I envisioned for us will never come to be.

So, maybe I do feel something. A lot of somethings. And that’s okay.

What breaks my heart is knowing that many others are facing similar emotions tonight. The loss of a loved one leaves a void that’s not just in the memories, but in their physical absence. For those of us who are grieving, this loss feels overwhelming, especially around the holidays. Yet, I try to stay hopeful, knowing these feelings are temporary. The question, though, is how long will this funk last? Will I feel better tomorrow? I never really know.

For me, there’s no magic fix. I can’t simply turn to one thing to make it better. I have to work through it. I need to understand my feelings, recognize what’s causing them, and learn from the experience. Sometimes, I grasp the lesson quickly; other times, it takes longer. But through it all, I know I will get through this. I’ll adjust to this new version of normal. I’ll find happiness again, and I’ll regain hope.

Until then, I will feel. I’ll feel the absence of Tom, and the grief that comes with it.

And you know what? It’s okay. I know I will be okay—and so will you, if you’re walking a similar path. This is something I want those who haven’t experienced this kind of loss to understand: We know we will be okay. We just need to work through our feelings, in our own time. There will be ups and downs, and sometimes they’ll come in the same day or week. But that’s the nature of grief. It’s the price we pay for loving deeply.

Can I tell you something? I would choose love every time, even knowing the pain of grief. That’s how powerful love is.

Hope will come. We’ll make it through Christmas in our own way, and when we look back, we’ll see how strong we really are. We’ll remember how we conquered this day, and yes, love will have carried us through it.

All my love,

Lara

Today at HEB (the most amazing grocery store here in Texas for you who are not from the Great State of Texas), I found myself standing in the aisle looking for gallon size zip lock bags when memories of past Holidays came pouring in. I am not sure how long I stood there: three seconds, thirty seconds, or a minute plus. What I can tell you is that when I came back to the present, I was crying, and my heart was full of Guilt. I kinda believe this little visit from guilt has something to do with me actually feeling hope and happiness as I enter the holidays. Which is a complete 180 degree change from this time last year. Maybe there is guilt related to some advocacy I have been working on. We are close to seeing a piece of legislation become law, and I am terribly sad that Tom is not here to see this. It is something that meant a great deal to him. Maybe it has something to do with all my travels or maybe it is just that time of year when we reflect on the past.

Guilt is the little bastard of emotions, isn’t it? I will tell you that before the ALS journey in 2016, that little emotion controlled me. I let feelings of guilt related to me believing I needed to be more or do more. Of course, that was of my own doing right. People can’t make us feel guilty; only we can do that. I mean, people can try but it is an emotion that you alone control. So why today, in the middle of the aisle, looking at zip-locks? Maybe it had to do with my shopping. I was picking up some items for Thanksgiving. I have not planned or cooked a real, traditional Thanksgiving meal in a long time. We have been lucky enough to be the recipients of Thanksgiving meals thanks to our amazing neighbors while caregiving took all my time. The year that Tom died, our family had a Thanksgiving dinner and last year we pretty much skipped it.

As I finished my shopping and drove home, this post started to write itself in my head. That’s typically how my posts start, with me trying to figure out what I am feeling or why. When Tom died, I felt guilty for being alive. When I smiled again, I felt guilty for being happy. Taking these trips, yep, guilt for having adventures Tom would never have. Here is a big one: guilt when I started dating again. The guilt with that, HUGE. I mean I felt like I was cheating on my husband. With each of these, I felt the emotion and recognized that it was just that, an emotion. The reality was that yes, I was alive and he was not. I was finding happiness again even with my broken heart. I could and did enjoy my adventures, the ones he never went on and yes, happiness in dating a man that was not my husband, I mean that was not my late husband was real.

Our brain and heart plays tricks on us. Sometimes they refuse to work together to keep us in the now, in reality. I think this is why I have found it is so much easier to give in to the feelings and not fight them. It allows me to listen to what my body and mind are telling me which I believe is just to feel the sadness. Usually if I do allow myself to feel the feels, my brain kicks back in and grounds me in reality. Tom is gone, but I am alive. Tom’s wish for me was to live my life and find happiness and I am really trying hard to do that. It is when I can do this, that my emotion of guilt is replaced with gratitude.

When I feel gratitude, there is no room for that little bastard of guilt. Gratitude is an emotion that many find hard to find, but if you can, it will allow you to find the happiness that seems impossible when you experience loss. So as I stood in the HEB aisle today, I took the journey from guilt to gratitude. Sometimes, the journey is fast; sometimes, it takes a hot minute to figure things out.

As we approach the first holiday of the season, I wish nothing but a fast journey from guilt to gratitude for those that are struggling. Focus on gratitude as hard as it may be, just stay focused.

All my love,

Lara