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.

5 thoughts on “Another Unwanted Journey…

  1. I’m really sorry to hear this. There is always something to be thankful for. But sometimes it’s okay to allow what’s in our hearts to show. How will others know when to pray?

  2. I am unspeakably sorry to hear about this unwanted journey you are on! And SO grateful at the size of your hearts-letting us all in to share this -to hold you and your family in our thoughts and in whatever deeds that can help you along the way. Vast love!

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