It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
This is the post excerpt.
It will be vulnerable…
It will be raw…
It will not always be easy, but it will be worth it.
Please follow me as I write about living and dying with ALS.
He is so damn lucky he married me!
I remind him of this fact several times over the last few days. This trip is something he has been planning for months. Even I don’t think I know all the pit stops and excursions he has been quietly scheming about for hours upon hours.
What started out as a “quick” bucket list drive down the coast on Hwy 101, has somehow turned into some grand adventure of days upon days, seeing everything one could possibly see from the Oregon Coast clear down towards the Mexico border!
He is lucky I love to drive…
He is lucky that the idea of loading up and towing a 9-foot trailer and carting it around with us on this little adventure doesn’t even phase me…
And he is damn lucky that I am up for the task of loading and unloading each and every morning and night all the baggage, medical equipment and crap that goes with taking a wheelchair bound man and two kids on such a monumental task..
But do you want to know the best part?
I am so damn lucky, because he knows how much I love to drive and how much I love when he plans these adventures of ours!
Leaving what I consider the ugliest part of Washington (sorry…but seriously, Spokane is fffuuugly!) and driving southwest…the blue sky feels like a good omen. The gods are smiling down on us, as we left only forty-five minutes behind schedule. As we leave the more populated areas, the road seems to opens up, beckoning me to push the pedal down and glide faster along. I resist the urge.
I glance around. The wind is tickling the grasses, and I say a silent prayer of thanks.
I know how lucky I am to have this opportunity and I can’t help but feel incredibly blessed to have this crazy life. (Please remind of this feeling again because I am sure that after a week with all this responsibility and work and driving…I may not feel so ecstatic to be in this situation!)
Matthew leans over, trying to whisper above the 15-hour long playlist that my daughter has meticulously planned for, and says, “I feel normal when we are driving.”
I bop my head in tune to the music, and also in agreement.
I know exactly how he feels.
I reach over to hold his hand, laying my hand against his palm, my fingers trying to curl around his. His fingers simply lay there. But I enjoy the feeling, regardless that he can no longer squeeze my hand. I am simply content in the moment.
As the volcanoes, tiny specs against a horizon edge closer and closer, we turn onto a road unknown.
Matthew has worked or driven every road and highway throughout all of Washington and most of Oregon, but finally, we have turned onto one he has yet to experience.
He seems pretty content to stare off into the distance, and I am just as content to listen to the music and sing, (off-key and horrible, but no one seems to complain)
The fields are each meticulously groomed, whether the seeds have sprouted into wheat, or the ground has been tilled, ready for the next crop, there is something so satisfying in seeing row upon row, so neatly edged.
For a while, my imagination wonders, and I envision myself sitting on a heavy piece of equipment, tilling my land
I quickly shake my head…
Who am I kidding? If I were going to have any other life, of course I would be a truck driver!
Hours have gone by and now those tiny specs have grown into several large peaks, jaggedly reaching towards the clear blue sky. One has just a billow of clouds around its peak, as if they are hugging a friend and are not ready to let go. The road dips and swerves, small towns, each one lagging in what some refer to as “progress” weave in and out with the roads and fields.
The kids are giggling in the back seat, munching on cheese sticks and playing games they packed days before. I keep searching the rear-view mirror. Their faces so perfect, my heart aches.
Every so often, my daughter checks her watch. She is counting backwards. She thinks we are going straight towards Arizona. I keep reminding her we have at least a twenty-hour drive, yet in reality, we are just a few hours from our first stop
– Crater Lake.
Even I am having a difficult time keeping the secret!!!
As we near our first stop for the night,a small town outside of Bend, I notice the farmers have been busy stacking and compacting the hay into perfect little squares. I can’t help but feel they are artists, cutting their designs into the earth. Even Peyton agrees, as her face glances out and she sees the same thing Matthew and I are staring at.
In perfect arches, each square bale of hay is perfect placed along its path, each one exactly the same distance apart.
“That is so satisfying for my OCD!” she says, with a grin spread across her face.
We all burst out laughing…she is definitely my daughter!
For several hours today, we were normal.
A family, taking a vacation. Laughter and giggles, and jokes and bad singing to Queen and Elton John…( my daughter did a great job on that playlist!)
And as I lay here, my fingers playing against the keys of this old computer, with the sound of small snores mixed with breathing machines and fans…I am content.
Damn he is lucky he married me!
I’ll be sure to remind him in the morning…
A Letter to My Daughter;
The time has come.
I must admit, knowing for years that this moment would be upon me, I was still caught off guard. I had no idea the multitude of emotions I was going to feel, seeing you sit among your classmates, in your cap and gown, as the speaker announced the Class of 2019. As your hand reached up to move the tassel from the right side over to the left, signifying the completion of your high school career, the tears began pouring from my eyes.
I suppose it may seem silly to some, but I wasn’t ready. I’m still not ready for my job as your mother to be over. I have no idea how to move forward as a mother to a young woman. So please forgive me, as I am sure I will stumble along the way. I have had you all to myself for eighteen years. And I want more time. I am not ready for this to be over.
I will never forget the moment those two pink lines appeared, signaling the changes that would soon begin in my body. I will never forget the first time I felt the little flutter of kicks as you began making your presence known. As the months went by, and I was more than ready to have the heaviness of carrying you inside of me over, I would learn so much about your personality, and you weren’t even born yet!
You were ten days overdue. Even then, you were stubborn as hell. I should have learned in that moment, the extent of your stubbornness. There was nothing anyone could do to make you do anything you didn’t want to. It wasn’t until we were both exhausted, and our heartbeats and blood pressure were dropping, the risk too great to both of us, that the doctors in the room decided to take action. After 18 hours of intense labor, you had to be dragged, kicking and screaming into this world.
As the months went by, you taught me how to be a mother. I must admit, I was probably more nervous with you than I was with your sister and brother. I read every book on what to expect, through each month or stage along the way and which milestones you should be hitting and when. You were a great napper but would only sleep through the night if you were walked and sung to. I was sleep deprived for years, but I loved every minute of it!
And true to your personality, you did things when you were good and ready. You were independent from the beginning. Never fearing the strangers around you, or being out of my line of sight, you were off on your own adventures. You waved goodbye on your first day of daycare, with no tears or drama. I doubt you knew I went to my car and cried like a baby, seeing your two-year old self walk into that room of strangers, with out a care in the world.
I remember your first days of preschool, and kindergarten. Your first temper tantrum. WOW! Over and over again, you showed me your fierceness and independence. You never wanted to fit in, nor try to morph into those around you. And you have always excelled at voicing your displeasure at things that do not go your way.
Maybe that is why it comes as no surprise that you were anxiously wanting to grow up and get on with your life. School was never your thing, nor were clubs or sports, or group activities. You preferred beating a drum all your own.
I was the hardest on you. I am sorry about that. I suppose because you remind me so much of myself. I want you to be so much more than I ever was, and I definitely pushed you. You, of course, pushed back.
I watched you walk down that aisle yesterday, that beautiful smile across your face, as you looked at me and said, “I did it, Mama!” and my heart ached once again. Another symbol that my job is over. This is it. I don’t get a do-over, or more time. You are off to begin your new life.
I probably embarrassed you after the ceremony when I grabbed you and began sobbing, my head tucked into the crook of your neck. You are now as tall as I am, and more beautiful than I ever could have imagined.
I will feel this heartache for a while, I suppose. It seems incredible that these years have flown by so quickly, and my role is now changed. I wasn’t ready. I am not sure if I ever will be. My heart is breaking into a million pieces, but I expect this is the same feeling the countless mothers experience throughout their lives.
You taught me how to be a mother. I can never thank you enough for that. It has been the most difficult journey of my life, and the most beautiful and rewarding. I am immensely proud of the woman you are growing into, and I hope that throughout the years, you will hold that independence and strength inside of you. As you struggle, and experience roadblocks and failures along the way, I hope you know you can always lean on me for strength. I will always be here, cheering you on.
I know that I was not perfect, but I hope you know how much you are loved, and I tried to show you how much I loved you as often as I could. I never cared whether you were the smartest or the most athletic, nor the most popular or the most beautiful. I have always been in awe of your ability to walk away from anything that does not serve you, including the need to please others. Your character traits will take you far in life, so hold on to them.
I am still on the journey of discovering who I am, and more than anything, I wish you happiness. I hope you take the time to learn about who you are and the things that bring you joy. I hope you reach for the things in life that are important to you, no matter what the world whispers in your ear, look for what you are passionate about. I hope you choose kindness over judgement, and forgiveness over anger. There will be many times when that will be real struggle. Learn to let go of the things you cannot change and as I always say, “You have no control over others, you can only control how you respond.”
And above all, know that you are loved unconditionally and will always have a mother who will support you and love you, for exactly who you are.
It has been an honor being your mother, and I am excited to see what life has in store for you. You are and always will be, my baby girl.
You didn’t think it would happen. Not to you. You had it all. You had a loving and supportive family. Siblings and cousins you saw or talked to almost every day. You had friends. Friends who grew up right down the street from you, buddies who had gone through thick and thin with you.
Slowly, so slowly at first, it seemed almost as if you might be imagining it all.
First, the words of condolences.
“I am so sorry you are going through this.”
“I heard about the diagnosis. I am so sorry.”
Next, they see you out and about, but instead of the happy greeting you would normally get, they avert their eyes. You sort of stop. Unsure of how to proceed. You see them look away. You clearly make them uncomfortable now. They are hoping you don’t call out or draw attention to them. They duck, they turn away, they do anything to avoid having to face you.
It seems awkward at first. You take it personally. You feel as if you have inconvenienced them in some way, but you aren’t sure how.. After a while, it becomes such a common occurrence, you do them the courtesy of simply not even looking in their direction.
The pain is less sharp with every ripped page of a calendar month. It seems that time has a way of helping you adapt. You adapt to the loss of mobility. You adapt to losing your independence. You adapt to losing camaraderie with co-workers you used to see daily. You simply adapt to losing something, each and every day.
You think you have managed to come to terms with all the changes, but then you realize that the changes never stop.
After your body has morphed into something you no longer recognize, and you only slightly look like the person you used to be, you must now adapt to a new challenge. The friends and family you hold so dear. have all just slowly dropped out of sight. You had no idea that this is the part that would test you.
You thought dealing with the disease would be the hardest thing you would ever have to deal with, but you discovered you were wrong.
The hardest part, in fact, would be watching everyone around that you love move on with their lives, and all you can do is stare at a screen and watch it all happen.
You do everything in your power not to click on that icon, you try so hard to stay away from social media.
You don’t need to be reminded of all the Christmas parties, the weddings or the birthday celebrations that you are no longer invited to.
You don’t get to be included in the phone calls, or the invites for a drink to commiserate a friend’s breakup or loss of their favorite sport teams championship game.
The connection is gone.
Funny that you didn’t notice at first. You were so focused on the loss of your legs, you hadn’t noticed that those friends who used to talk to you every day, haven’t reached out in almost a year now. No one has stopped by to visit in so long, and you don’t even bother asking for visitors. They all promised, but its been so long, you finally quit anticipating anyone knocking on the door.
The invitations you had gotten were either to someplace that cannot accommodate your new situation, or it was a pity invitation. At least, you assume it is a pity invitation, so you politely decline. You feel you have done everyone a favor by not going.
You thought the disease would be what caused your body to stop functioning. Now, you no longer believe that. Your heart is breaking, and you begin to imagine that it is possible to die from a broken heart.
If you had only known the disease would not be the hardest part to deal with. You found out the most difficult part of each day would be to live and then die from isolation, depression and sadness. The ability to see all those people you once had a connection with, posting pictures of their lives, their loves, and their ups and downs, but you somehow, realize that you were forgotten.
You want to turn away, but you so desperately need to feel as if you are still worthy of their time or effort.
Now, you scour the internet, Facebook, Instagram, Twitter…anything that connects you in some way to the people you used to know. The anger is gone. Now, you simply want a connection with them. Even if the only link to them again is by pressing the “like” button.
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.