The Best Laid Plans

This time last year, I was in Washington D.C. taking part in a week long event hosted by the Elizabeth Dole Foundation. This week long event included a Gala so I was able to dress up, put a little makeup on and go mingle with other caregivers and those that support us. It was so much fun. I so enjoy meeting new people and chatting them up.

As with everything in 2020, COVID has required everyone to do events virtually. I am actually good with this. Long before COVID, ALS put a stop to getting out. The Big He is not all that mobile these days. It’s uncomfortable for him to be in his wheelchair for any length of time so we spend our days in the master bedroom. The formal gala that I attended last year is virtual this year. So for us, watching in the comfort of our bedroom is just fine. I did however have the best plans for us to dress up to include our paid caregiver M as well as the puppers. Lou even has a new bow tie. You notice I said ‘plans to dress up’ right?

This morning Lou woke me up and the Big He was staring at me. It turns out his communication device stopped and he had been unable to get my attention since 3 a.m.(with his trache he no longer makes any noises and since he is paralyzed, he couldn’t do anything but lay there) to help him. We often wake up multiple times a night because he needs to be suctioned. He did have multiple times he needed suctioning that some how he was able to resolve but also had to deal with panic attacks because his inability to get me. I spent the morning beating my self up. Why? The guilt attached with not being able to meet his needs has been overwhelming. I can handle the Big He’s anger and frustration that is generously given but what I can’t handle is knowing that he experienced fear and helplessness.

The issue has been resolved. His computer is working without any issues and I have set up a switch/alarm system next to his head that he can use since he does have some movement in his head and neck. As the evening has approached I find I just don’t have it in me to get dressed up. My heart is sad. I know I am only human as a few caregivers in my caregiver tribe reminded me. This morning, I was the Big He’s wife. The woman who loves him dearly and would do anything to protect him, to make him comfortable and safe. This morning, as his wife I did not do that. He however has been amazing and loving. He has reminded me all day how much he loves me and that he understands I am only human.

So since my plan to have a fancy dress up night will not happen, here are some photos of the event from last year.

All my love,

The She

Just one week

Since the Big He’s diagnosis we have wanted to bring awareness to not only the disease ALS but the prevalence in the military community. We have written blogs, did Facebook and Instagram posts and Tweeted, I wanted to do something a little different. Instead of writing something, I wanted to show you what one week looks like. For time sake, I did not include our whole week…just the highlights. Besides what is shown in the video below is the non-hands on care that occurs. It’s things like keeping an eye on supplies. Making sure they are ordered and received before we run out. I must find homes for the constant Amazon boxes and VA deliveries. The time and energy spent on the phone facilitating care for the Big He happens behind the scenes. In this particular week, I needed to secure a Dentist which was not an easy task. Working with the VA on this and the support we would need took a toll on me. You sometimes need to talk to multiple people before the game of “telephone” ends and everyone figures out what was originally said or requested. It actually took me three days to recover mentally and emotionally. While we don’t deal with emergency dental procedures every week, every week something is going on.

ALS is not for the weak for sure. We are warriors and we will fight this enemy every. damn. day.

ALS-Just one week

All my love,

The She

You is kind, You is smart, You is important and You is loved

Tonight is the Little He’s Birthday Eve. Tomorrow at 12:51 pm, our boy will officially celebrate his 18th Birthday. First, I still am not sure exactly how he grew up so fast. I mean, I clearly remember bringing him home from the hospital not that long ago. Of course, he came home 104 days after his birth. How crazy is that? His original due date was December 12th but he just couldn’t wait to meet us and came August 30.

This time 18 years ago I had already spent a week in the hospital on bedrest. I have a problem carrying babies. I have what is called an incompetent cervix. How much you wanna bet, some dude came up with that name? This time 18 years ago, I knew something was wrong. I knew there was a problem with the pregnancy but the doctors and nurses insisted nothing was wrong. There was nothing for me to be worried about. But still…

That little voice that spoke to my heart was right. Something was wrong. In the early morning of August 30 my water broke. Within an hour or so, the Big He and I were transported to a larger hospital with a higher level NICU. Roughly six hours after my water broke, our tiny 24 week preemie was born by emergency C-section. He made a little kitten sound, ensuring us he had been born alive. That little guy had a tough few months. He had to have three surgeries during his NICU stay. He had ups and downs but surprised everyone with how healthy he seemed despite his early arrival. That amazing strong boy has been surprising us every day since. He never developed any of the disabilities that could have developed due to his early arrival. He has grown into an amazing young man. He truly has a kind soul. He has amazing people skills and is so dang funny.

He has surprised his Dad and I on how he has adapted to this ALS life. It is not easy and makes being a teenager more difficult due to the responsibilities that have been thrust upon his young shoulders. He has taken over the household chores his Dad had been doing. He always seems to know when his Dad or I need a little extra love and the best part, he doesn’t mind showing it to us. He is not one to follow the crowd but paves his own path and doesn’t really mind what other’s have to say about it. What a great trait to carry him through his adult years.

Tomorrow, despite ALS and a global pandemic, we will celebrate our amazing boy. I was thinking this evening that while as parents, we try and raise amazing kids to be happy, healthy productive members of society we as parents, actually learn from them as much as they from us. I have learned to trust that voice that talks to my heart. I have learned that in the moments when I question if the Big He and I have done everything we could for our boy in raising him right, all we have to do is look at him. The answer is without a doubt, yes.

Despite being born 16 weeks too soon, enduring 3 surgeries in 3 months, and learning at 14 yrs old that his Dad had ALS, he has shown us how amazing, kind and loving he is.

Happiest of Birthdays sweet boy.

All my love,

The She

The Pearl Anniversary-30 Years of Love

Today the Big He and I celebrate 30 years of love. My anniversary go-to gifts to the Big He are typically those that he can use to either fish or grill. ALS has taken those things away so the challenge now is what to give that is meaningful to him. My gift this year to my better half is the gift of memories. To remind us of our amazing life together.

A love story, 30 years in the making

Haircut for Hidden Heroes

Pandemic hair and this wife does care. The Big He needs a haircut. He said he would not cut it except for a good cause. He wants to support Hidden Heroes like me, but he needs your help. He will cut his hair if we meet our $5000 goal. Can you help us? Give a little or a lot. Collectively we can reach this goal. You will not only be helping support veteran caregivers but you will help this wife get her husband’s haircut. It’s really long folks! You can give at the link below. Thank you.