She must have noticed how my face fell in disappointment as my head turned, first to the right, and then to the left of me. I had run into the store to grab a prescription, leaving everyone waiting in the car. As I went to close my door, he asks me to quickly grab him something as well.
I nod my head, irritated as I hurry inside.
Matthew had a craving for Reese’s Peanut Butter Cups lately and asked me to grab a few. I tried to remind him that we had plenty of M&M’s and Kit Kats at the house, sitting in the freezer. The kids had been gone for several days, so the candy hadn’t been gobbled up just yet. But, no, his craving was specific, and judging from previous experience, if I don’t acquiesce, than the craving builds into some incredible hunger monster of epic proportions, often resulting in his “Go BIG or go home” philosophy that ends up with him miserable and having a stomach ache.
Now, I am standing there, prescription paid for in one hand, and three king sized Reese’s packages in the other, hoping to get through the checkout in a minute or two…not the twenty minutes it looked as if it were going to take, judging by the long line of full grocery carts in front of me.
“Would you like to go in front of me?”
I looked up into a sweet face, waving for me to come closer.
“That would be great, thank you!”
I squeezed in between the cart and her, sucking in my stomach as I did this, shuffling my feet in a strange dance as I place the candy bars down on the conveyor belt. In full disclosure, sucking in my stomach does not, in fact, make my ass any smaller as I try this…but it is always worth a try.
I had noticed, as this older lady and I had done our strange shuffle dance, that she had a bandage just under her shirt. I assume it is a port, and I try to glance away quickly so as not to make her uncomfortable that I had been staring. My eyes venture over to the stacks of pizza boxes and frozen egg rolls, and various other over-processed foods. Maybe she has a Matthew at home as well.
She reaches over to rearrange the food, smiling.
“My grandsons are coming over tonight for a sleep over. They are bringing some friends and instead of cooking, I am hoping this might be enough to fill them up for a while!”
I know all too well how hard it is to feed the never-ending pit of teenage appetites. I learn that her grandsons are in their teenage years but still love coming over to Grandma’s house. I share with her I how I can’t wait to become a grandma!
I quickly clarify that I can in fact wait, as my oldest is not quite 18 years old, but that I am looking forward to spoiling babies…only handing them back when I am done!
She mentions that she has enjoyed having her grandbabies over since she moved her almost thirteen years ago.
We talk more about parenting and the joys of kids.
She tells me how perfect her grandkids are. I nod, telling her that my children are also pretty perfect.
“It’s the parents, you know.” She leans in to tell me this as if it’s a secret between us. I laugh, telling her I don’t think I had much to do with it. I was really just blessed with great kids.
“When people tell me that kids today are awful, I just don’t agree! It’s the PARENTS that are awful!”
I can’t help but agree with her a bit on this.
She mentions the cancer.
She is doing really well with the chemo. In fact, today was her anniversary and she celebrated by having another chemo round. Her husband wasn’t doing anything to celebrate, but she seems content with feeding teenage boys with copious amounts of junk food.
She proudly pats the stylish grey bob on her head, “I did lose my hair, but I have plenty still to spare!”
I tell her I am sorry but that I am glad she is still feeling so well.
“It was more emotionally hard seeing all the other patients come in, looking sicker and sicker with each round.”
I nod in agreement again. I have no experience with that, but I can imagine it must be really scary and difficult not knowing.
She says how thankful she is, because she knows it can be worse.
I mention that my husband has ALS but that I have learned to find even the smallest things to be grateful for.
Her eyes widen, and then fall as they fill with sadness, her hand squeezing my forearm.
She gets it…
I give her a small smile, trying to comfort her as she tries to apologize for something she has no control over.
I don’t have any person experience with cancer. I know people who have had cancer. I knew people who have passed from cancer, but my experience with having a close loved one with cancer and caring for them is next to nothing.
However, there is something comforting about looking into another person’s eyes and finding compassion and understanding.
For just a moment, two complete strangers were able to connect about how life isn’t fair, but that joy can still be found in the love for family, a few boxes of pizza and maybe a Reese’s peanut butter cup or two.
And that craving of Matthew’s?
Yeah, those king-sized bars made their way into the freezer, along the other piles of junk food…
San Fran or Bust!
ALS Fact of the Day~
San Francisco or Bust!
Inverness, CA is solitude and beauty and quiet in a way that I have not experienced in years. I want more, but I will be content with the few minutes I was able to enjoy before I was needed by the tiny travelers and the big guy. There is a part of me that could stay here forever, watching the tide ebb and flow with the seasons. I must admit, the food and the local market leave much to be desired, but seriously…when was the last time you sat outside and listened to absolute quiet? Just the gentle lapping of waves as they caress the shore. No cars, no loud brakes or honking or engines revving. It was peaceful. I desperately want to come back someday.
Check out time is noon, which should give me enough time to shower Matthew, clean out the van and get re-packed. The entire process should only take me a couple hours, but the kids are happy to watch a movie, and Matthew is laying back resting. And I don’t want to be the drill sergeant ruining the peaceful setting. So I wait…almost patiently.
The night before, I had tried to lay Matthew on the bed, with pillows all around, under his head, his arms and legs. However, sometime in the middle of the night, the pain was too much. So, once again, I get up, trying desperately not to wake the kids as I grab the lift and put him back in his chair. His knees and hips are hurting, regardless of what position he is in lately, so it means a lot of moving, and stretching and trying new ways to make an impossible situation bearable.
Finally! At 12:00 pm, we load up and are ready to hit the road. Everyone is in good spirits once again, and I suggest we get gas and a good meal before we attempt anymore of Hwy 1. Our navigator thinks it would be better to get down the road a bit more. ( I silently disagree with his assessment, but I let him make the decisions, as he is the one who planned all of this!)
So begins the swerving, and curving..the topsy-turving. In and out, and all around, we roll from side to side. The kids begin complaining of headaches, and belly aches. My arm hurts from holding Matthew steady. Still, he wants to move onward.
Where the redwoods stood tall and proud behind us, the trees that come around the bend are different. The only way to explain them is as if you were to take all the different kinds of trees from across the land, and then toss them haphazardly across the landscape. There are trees that are leafy, that reach over across the highway to touch the fingers of the trees of their lovers across the road. It was almost as if they couldn’t bare to be apart, and even the simplest of touches would have to suffice.
The next trees were lined up, one-by-one, along the road, in an almost military style, as if they were saluting the cars as they passed by, standing proud and strong at attention. Next were the trees that were a bit too lazy to make the effort to create strong branches. Instead, they had vines and moss that were hanging from limb to limb, as if with a small smile and a happy gesture to say welcome, but they were not going to offer any shade.
We were down to an eighth of a tank of gas again, and everyone was getting hangry. I have such happy memories of S.F. and I can’t wait to show them the sights! But, my anxiety at letting the gas gauge get that low, and the kids are noisily munching on the last of the bags of baked chips and popcorn.
Matthew keeps repeating, “Its about the journey, not the destination.”
But I really want to get to our hotel room and then explore and it is already 2:00 pm.
We see the Golden Gate Bridge. I reroute us so we can get closer, but hauling a trailer behind us is proving to be difficult in a tourist hot spot.
We agree getting to the room and then coming back would be better. I am getting antsy. I don’t want to be in the van anymore! I want to be out, walking around and seeing things!
We navigate our way through the back streets towards the Fisherman’s Wharf. Only one problem…. The valet won’t take a vehicle with a trailer.
I have the kids unload everything, and I have them all go in and check in and get things to the room while I navigate the parking arrangement.
Each parking lot within a four-block radius refuses to let me in.
It is so bad, in fact, that they come running and won’t let me even enter. They yell at me that I can’t park there, and they send me on my way. One man glares at me, putting his body between the barrier and my can. All I can do is ask as politely as possible, and know that the prison system in California frowns against running over people for no reason. So I smile and back out into honking traffic. Each place looks at me as if I have two heads for even attempting to bring a trailer downtown.
There was a moment, when one of the garage attendants was telling me to go away, that I almost started to cry. It was close, but since I only cry when I am truly desperate, I backed that trailer up, in the middle of rush hour traffic like a true Mountain Woman, and short of telling him to piss off, I drove away with my head held high.
Until I parked and went into the hotel and saw their faces.
The kids were so sad.
I don’t know what is worse. The fact that they were ecstatic over the size of the large bathroom, so I would be able to help Matthew, and we had to leave, or the fact that they had to go back up to the room and load it all back up, while I brought the van and trailer around.
People are often unaware of what it takes to find accessible locations. I can’t say it was ever anything I ever would have considered during my life before ALS. But, now, it is constant. I look at stairs, and steps, and dips and holes, I am constantly navigating and judging if it is something we can do. Most times, we are unable to venture out to the highlighted attractions simply because Matthew lacks legs that can take him up or down a few steps.
I refuse to let this ruin our day.
I pull the kids off to the side of the trailer after we have loaded it back up again. The damn valets and hotel guests can take a flying leap as far as I am concerned.
I kneel down, and I hug each of them and I tell them how much I love them and how proud of them I am. Not once did they complain or become rude. They did what was asked of them, even when they were disappointed. Not many kids could hold it together as well as they have today. I told them that things weren’t always going to go as planned, but that we could only do the best we could do and go from there.
So off we were, once again. A hotel booked about an hour south from here. With the idea we would return in the morning.
I don’t know if I should thank San Francisco for permanently scarring my children to the effects of drugs and prostitution, but they got a pretty good idea of what it leads to. As our safari bus tried to make its way out of the city, we went from light to light, witnessing drug deals, people literally leaning against the building to use the restroom…and I don’t mean #1! There were people talking to themselves, and people dressed up in various outfits. I tried to explain that some people were not given the same chances or advantages that others are given, and others become broken through a lifetime of bad choices.
They seemed oblivious to the seriousness of what was happening around them, and as we went up the steep embankments and then down again, I couldn’t help but laugh so hard I was snorting. The kids were freaking out at the almost 70-degree incline (so not joking here!) and I was literally trying not to crash as I help with one arm to keep Matthew from slamming his head into the dashboard on the way back down. Brakes are good! I know, because I was on them for quite a while!
But alls well, that ends well. I managed to drive us through the city and to our hotel in San Mateo, where they are above and beyond accommodating!
We have hotels figured out for the next six days, and now we will attempt to see San Francisco once again..this time without a trailer in tow, as we will be leaving it behind to navigate a bit easier!
Some important life lessens here:
- Don’t do Drugs! They do scramble your brains!
- Don’t use the bathroom on the main thoroughfare..at least go the alleyway!
- Even when people are assholes, try not to lose your patience. They are only doing their job
- NEVER! I repeat…NEVER! Attempt to take a trailer into the city…EVER!!!!
San Fran! – Take 2!
ALS Fact of the Day~
If you must know, I never write if I’ve been drinking. Matthew says its because I refuse to be truly vulnerable.
That couldn’t be further than the truth.
The truth is that I simply don’t have the ability to form complete sentences if I have had a drink or two. It’s similar to drunk texting your ex at 2:00 am after a night of too much indulgence, or getting on stage with a microphone after knocking a few back and thinking you can speak coherently.
It’s just a bad idea!
You’ll end up thinking you sound intelligent. But in reality, you’ll come across as desperate and probably a bit inept.
I left off on our California adventure having had a less than ideal experience in San Francisco. We had hoped to have two days to explore, but after the hotel and trailer fiasco, we would have to make due with only one day left..
I stopped writing for the remainder of the trip because, as you can probably guessed by now, I began drinking every night.
Don’t raise your eyebrows at me!
It’s hard work, daunting even, to be solely responsible for a paralyzed man, two children and all that that entails, thousands of miles from home, or help of any kind. Falling into bed exhausted, the last to close my eyes, and the first to open them. I took my respite once everyone had fallen into their slumber. I would pour myself a glass of my favorite red wine…or more often than not, some cheap crap from the gas station with a twist top, poured into those little Styrofoam cups from the bathroom counter and relax for just a while, thankful no one is needing me for just a while. Some nights I stopped with one glass; some nights required a bit more of the tranquilizing liquid.
However, Matthew is holding me hostage. He says I need to finish the story and post the pictures so that we can move on with the next adventure!
So here it goes….
San Francisco – Take 2
The city is a hodge-podge of messiness. It is almost as if it can’t quite make up its mind what it set out to be, so it took everything and everyone and wrapped its arms around in a welcoming embrace. Before the gold rush, the city consisted of about five hundred people. One year later, it was five times that size. There was no planning or time for adjustment. They began building in the least desirable location possible. On steep mountains and dense forest on the edge of the ocean.
Just ten years later, the population was over one million.
Yet, now, it feels as if the hippies, the yuppies, the homeless, the hopeless, artists and businessmen alike, have molded into a beautiful condensed mess. There are redwoods mixes with cypress trees, military with peace and love. Vines, flowers of every texture and color mixed with weeds growing in impossible locations. Fog, so thick you can’t see ten feet in front of you, only to traverse a few miles, and see brilliant blue skies, and birds gliding seamlessly across the horizon.
Every ethnicity, culture and race can be found within a few miles of one another, stacked upon each other, not unlike the buildings they co-habitat in. In a matter of just a few hours, we ate at the Fisherman’s Wharf, with Alcatraz looming off in the distance. We walked, following the masses along city sidewalks, when the kids jumped up and down excitedly.
Could they please???
Now, I am not much into the whole Ripley’s Believe it or Not kind of entertainment, but after looking aghast at the prices, I kept walking. Matthew rolled up alongside me and gave me the look.
I tried to ignore his scowl.
It’s one I get quite often actually. It’s the “You are being cheap!” look…
The next building had wax figures, some so life-like, you could almost sense their eyes following you as you tiptoe around them, inches from their face. The kids were creeped out yet enthralled by Madam Trousseau’s Wax Museum. The Virtual Reality exhibit was open, and this time, when I was given the
“Can we please, mom?!”
I shrugged and left it up to Matthew.
Okay, to be fair, the virtual reality was really cool. A quick walk back to the van and this time, buckling Matthew in to avoid him making a face plant on the dashboard, we went on to the next location.
The Fine Arts Museum, with columns and arches, complete with a beautiful Indian wedding taking place in the center of the columns. Women in colorful gowns, jewelry jangling at their wrists, eyes darkened to accentuate their almond shaped beauty. Men, dressed in their wedding attire, trying not to look nervous, their feet shuffling, as they readjust their vests for the hundredth time that minute. I felt as if we were trespassing, so I ushered the kids along the path, shushing them along the way. Matthew unable to follow us along the pathway by the pond, turned his wheelchair around and began to navigate his way around. We watched the swans swimming gracefully along. The idea of staying still and simply watching life move by for a while was tempting, but my children are unable to sit still for long and I should probably make sure they stay out of trouble.
Instead of simply walking along the path, enjoying the sights, and sounds, they have to run, whoop and holler. The next thing I know, my children are attempting their skills as modern day Tarzans, climbing onto massive limbs, so far high above the ground I began doubting their ability to get down safely.The limo pulls along side the street, and the wedding is about to begin. It is time for us to go.
The streets were jagged, the buildings looked ragged and old. Paint peeling from the walls, and steep steps into nooks and crannies that promised intrigue and ancient secrets. As soon as we find a somewhat level parking lot, Matthew wheels himself out of the van, we are ready to explore!
Each street is cobbled stone and cracked beyond repair. Most sidewalks are crumbling concrete with no gentle slopes to be found. Matthew would not be able to go far. We settled for a restaurant as close as possible to where we parked. We weren’t going to be able to explore this part, but we could at least try the food. Yelp reviews be damned!
Imagine the look on my children’s faces…no one spoke English. No English on the menu, no English to be found anywhere! The menu had strange marks etched beneath photos of food. There was no way to distinguish pork from chicken or beef…All we could do was point to whatever looked appetizing and hope for the best.
The circular platter in the middle of the table was soon filled, and they delighted in spinning it to and from, reaching for new delights. Besides sitting in an area where no one spoke English, it felt like any other restaurant. Families walking in, toddlers misbehaving or whining, and parents scolding them for wiggling. The tone, inflection of the stern voices, and the parental “evil” eye cross all boundaries!
I want to say that we had all the time to explore, but really it was more about racing from one site to another, since we only had this one day to see it all. A drive-by to visit the Painted Ladies (no one seemed to impressed..) to Coit Tower, and the last part of the day, driving down the infamous winding Lombard Street, all before the sun set on our adventure for that day.
I can’t say that it was easy to get around, and I am sure that it is even harder in a wheelchair, as Matthew was bounced around in his endeavors! However, the kids didn’t seem to mind only getting quick sneak peaks here and there, and Matthew was happy to finally see the city that I had told him so much about.
Stay tuned for our next few days of adventures along the California Coast!
A letter to my daughter…
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.
When angels have to leave…
sharing is caring…
slowly, they all just disappeared…
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.
What it means…
Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.