5 Weeks

It has been just over 5 weeks since we got the ALS diagnosis, and I have to admit, other than Sam’s death, this has been the hardest 5 weeks of my life. We still are exhausted, scared and frustrated. We also are completely and totally surrounded by love and support, which we so appreciate.

We have made a point to “stop and smell the flowers” as much as we can during this time, trying to focus on the positives, the love, the time together, the laughter. We’ve taken more walks, spent time with people we love, and pushed ourselves out of comfort zones.

What have we learned? We have learned to advocate for ourselves when systems don’t work for us. We have learned it is okay to say when we are not okay. We have learned how to admit that some topics are terrifying to broach. We have learned anew that love is all that matters.

 

Ellsy has a purpose (again)

Many of you know that we lost one of our alpacas during the winter. After his death, Ellsy (our remaining alpaca) went into a deep sadness. Clearly he was missing his friend, but also just was lonely and didn’t really have a reason to get up each morning.

Then Lana and Hila came to live with us, and when they got big enough, they moved in with him. Within a day, Ellsy had his purpose again — to protect his little buddies. They go in the pasture? He goes. They go into the barn to sleep? He will stand watch in the barn door, keeping them safe. New people come by the house and want to see the lambs? They better not get too close to his buddies! This sweet, docile, timid alpaca has turned into a fiercely protective guardian of our two sheep.

Last week, we had a friend come take some pictures for us, and some were taken with the sheep, or in the barn area. Every moment, Ellsy watched her, making sure she wasn’t going to bother his lambs.

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All of us need a purpose in life! In protecting those lambs, Ellsy has found his purpose again.

The Envelope

This morning, I received an envelope in my work mailbox. That’s nothing new, I always have mail in that box. The envelope was addressed to me, handwritten, and I didn’t really think about the sender’s name. It was vaguely familiar, but I was in full work mode, and it didn’t fully click.

Ten minutes later, in my office, I opened that manila envelope and pulled the pages from inside, and felt like someone had reached into my rib cage and ripped my heart right out of my chest… And I started to cry.

The pages had picture after picture of Sam, in first grade, taken by the sender who was student teaching then. The pictures are beautiful, full of life, laughter, curiosity. They show Sam measuring, poking, talking and thinking. They are spectacular. And they broke my heart anew. To be clear, it was an incredibly sweet and kind thing the person did in sending them to me, it was a gesture of love, but it still kicked me really hard.

I love pictures of Sam, you all know that. But, I think it was that I was so unprepared for them — at home, in my safe zone, maybe they wouldn’t have hurt so much. In my work zone, it was like being skinned alive. There he was, so beautiful, so full of life — and so not here in person any more.

After getting myself back together the best I could, I thought a lot about the envelope. Was it because it was at work that it hit me so hard? Because I am so raw emotionally right now anyway? Because they were so unexpected? Because I miss him so much? Why did it hit so hard?

The simple answer is love. Grief is love that can’t be shared with the recipient in person any more. I saw those pictures, and the rush of love was so strong, it almost broke me. Now, hours and hours later, I am so thankful for those pictures, and someday, I will be ready to open that envelope again.

Yup, it made me cry…

When I am stressed, I want chocolate and/or french fries. I keep trying to convince myself when I am stressed that I really want a green salad, but no, deep down, I want chocolate or french fries. As I have struggled with the stress the last couple weeks, I have (pretty successfully) fought the urge to eat those things, and instead have eaten them in moderation or not at all. I have listened to my Fitbit when it tells me to take a walk, and I’ve tried to be more cognizant of self-care.

All of that took a hike today when I snagged a small piece of Dove chocolate. I unwrapped the piece of chocolate, and as I always do with Dove, I stopped to read the note inside.

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And that little note almost drove me to my knees, and it made me sit and cry. No, not everyone gets a happy ending! Sam didn’t get that happy ending. He didn’t get to hold that niece he so wanted to meet in his arms. He didn’t get to see his baby brother shine in Anon and Inevitable. He didn’t get to grow old loving, laughing, living. And now with our newest journey, it is hard to find the potential happy ending.

Once I dried my tears, and took a lot of deep breaths, I realized that it is up to us to make our own happy ending, and that is done through love — because no matter what, I believe that love is all that matters. So if we have love, we have happy endings.

An Update

As we have continued to spin around in circles trying to adjust to our new reality, I realize that I haven’t written or posted as much as in the past. First and foremost, we have been running around to appointments, trying to make sure we are taking care of each other, while also having lots of wonderful visitors. It also is, realistically, that in my anger, hurt, sadness with the universe, it has been harder to be positive in outlook, and I have needed to think in a very focused manner about gratitude. And fiction? I have to admit that right now, my characters seem to have taken a hike for a bit, as my fiction brain seems to be on hiatus.

Being thankful? Feeling grateful deep in my bones? Yes, I am thankful and feeling that true and deep gratitude. I feel it for the dinners that have appeared at our house, the phone calls, the text messages, the cards, the silly memes, the hugs, the blunt conversations, the company on hikes, the chocolates and the photos. I am filled with gratitude for the love that has flowed our way, and it means more than I can express.

 

What can you do?

As we have started on our most recent unwanted journey, many people have asked what they can do to help. I keep saying that we don’t know what people can do yet — it is all too new, and we are still getting details and understanding what this all means.

But then we talked about it more, and we came to some conclusions about what people can do to help. They can do the same things that we always suggest in terms of  “Do a Sam.”  Say hello. Make eye contact. Listen. Don’t pretend it isn’t happening. Ask us how we are. Hug us. Those things help — they help a lot.

Thinking more about it, those still are the things that all of us can do for anyone, not just those who you know are struggling.

Thank you all for your support — it matters!

A Sam Story — maybe a couple of them…

As I have shared, the last week has been very difficult for us. Often as we tried to make sense of the news, I implored Sam to intervene, or if he couldn’t do that, at least give us a sign of his presence around us.

On Friday, I was outside feeding the animals when a small squall hit. As the sky darkened then got lighter, I begged Sam to send us a rainbow to show us he was with us. When it didn’t happy, I admit, I yelled and swore, telling him to “just do it!” As tears ran down my face, I turned from where we normally see rainbows to get hay, and as I turned back, a rainbow filled the sky.

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That rainbow helped. It helped a lot.

Then yesterday, we went for another medical appointment. Coming home we felt a little more centered than we had in a week, just from getting some information. As we drove south, another weird squall hit. Again, I implored Sam to give us a sign of his presence by sending a rainbow. I know my husband begged him too, just not out loud like I do. I again admit to swearing, telling him (Sam) to listen to me, and give us a rainbow. Then I started muttering about him not listening to me, and the rant went on…

Just then, I realized that we had been behind the same truck ever since the squall had started. This little white truck. Looking at it closely, I realized what the back of the truck said, and I started to laugh, poking my husband to get him to look too. What did the truck say? It said “Rainbow Acres.”

 

The moral of the story? Sometimes what we most seek is right in front of us, and we are so closed-minded that we can’t see it.

Another Unwanted Journey…

This past week, we started on a new journey, one not wanted and one that is terrifying. We haven’t yet fully internalized the magnitude of that journey, but it is time to write about it because it is time to see if I have fully integrated my own message of unconditional love, connection to nature and gratitude as a way to live no matter how great the darkness or how scary the journey.

This past week, the love of my life was diagnosed with ALS (Amyotrophic Lateral Sclerosis), otherwise known as Lou Gehrig’s disease. This diagnosis came completely out of the blue, as we had known something was going on, but had no idea this was a possibility. ALS? Seriously? We can’t win the lottery, but we can have a disease that occurs in a rate of less than 20,000 people a year?

We are just in the beginning stages of understanding the plan of care, the prognosis, and all of those details. Right now, it is completely and totally overwhelming, raw, and all-consuming.

One of my first sensations upon hearing the diagnosis was actually feeling my heart break — you all know how much I love my husband, and how much we have planned to live to at least 150 years old to do all we want to do together. Then started the rolling waves of crashing emotion. Fear, anger, sadness, anxiety, and then it would start all over again. I have cursed the universe, have used expletives in very creative ways, and probably will continue to do both.

Then, knowing that we needed to keep the news very quiet until we could see our children face-to-face to tell them, we had to stay quiet and answer the normal, “How are you?” questions without breaking down. Only a few people knew during this incredibly long, stressful week, and they bore the weight of being our supports while also having to hold our secret.

Now that secret no longer needs to be kept, we are sharing this news. And I am wrestling with how to find gratitude right now. The love? That’s easy. Gratitude? That’s much harder.

But, if I truly believe it can help, I need to try…

I am grateful for our parents’ support, even as they struggle themselves. I am thankful that Hila is getting better by the day. I am thankful for medical insurance. I am thankful for the few people who knew this week and held our hands, handed us Kleenex, brought us food and chocolate, and reminded us of how loved we are. I am thankful for moments of breaks in the stress, such as watching the lambs run and play. I am thankful for the love we share as a family and as a couple. I am thankful for the strength and humor of our biological and non-biological children. I am thankful for sunshine, fresh asparagus, music, and inappropriate humor.

We do not know exactly how this journey will unfold, but I do know that we have chosen to undertake this journey as we have with others before this one — with love, humor, openness, honesty, a healthy dose of expletives and sarcasm, and a fierce optimism and full out battle mode. We promise to ask for help, we promise to not try to do it all ourselves. We will do what we have to in order to fight this disease until there is a cure, and we will also hold to our priorities that love (and gratitude) are at the center of our lives, no matter how great the darkness. We promise to live every single moment with love, purpose, and hope.

Truly, love is all that matters.

The countdown has begun!

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Today is May 8, 2019, and it is only 13 days until Of Grief, Garlic and Gratitude will be in stores. Now, I know that it has already made its way into some stores, and maybe, just maybe has been sold to customers. But the fact remains, the official store (and print copies sold through online retailers) release date is only thirteen days away. That is pretty exciting.

Again, as mentioned in one of my FB posts, if you send (or post) a picture of the book in a store, I will send you a “Do A Sam” gift!

 

 

 

A sheep story…

As some of you know, our little Hila had a health scare last week. She suddenly came down with what is called polio (it’s not really polio), and it is caused by a combination of not having yet developed enough of a particular bacteria in her stomach, and a lack of thiamine. Thankfully, we caught it early, and the vet thinks she will make a full recovery — but as of right now, she still is partially blind, and very subdued.

Today, we decided that her sight had improved enough that we were ready to send Lana and Hila out into the pasture to graze freely for the first time. Opening the gate, Ellsy raced out and rolled in the burdocks and evergreen needles, and now he looks like a giant pincushion, sigh. Lana came tearing into the pasture, and just ran and ran and ran. Hila finally ventured out, clearly nervous with her limited sight. Here is Lana, just admiring her new playground.

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A half-hour later, I went out to check on them, and bring the lambs back into their normal pen, so that they wouldn’t get stomach aches from eating too much new stuff. I couldn’t find them! Not in their barn. Not behind the aviary. Not anywhere that I could see them. Then I heard a “baaaaaa” and turned to find the two lambs in the chicken coop. Clearly, they had decided it was a cool little lamb playhouse! Later, Paul would tell me that Lana had actually climbed up into the coop itself, and was standing in the chicken door looking out proudly while he mowed the lawn.

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So the girls were in the fenced part of the coop, so I shook the grain bucket at them, thinking they would come running. Nope. So I climbed into the coop. Yes, it was a sight to behold. They ran out. I followed them out, and they ran back in, and we did this over and over. Finally, I cornered Hila, and picked her up to carry her back to the pen.

There I am, hot, tired, carrying a really mad, squirming, heavy lamb down the hill, and suddenly, Lana decides that we all are playing, and she starts taking running starts and jumping on my back. Yes, in the end, I had muddy hoof prints all down my back.

We made it back to the pen, and I let a very thankful Hila down, and they scampered off to find water and grain, and I went to find a cold drink and a hot shower.