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.
Love Always,
Your Mama

❤️ Richelle Duffield
Matthew Wild

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When angels have to leave…

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“Mama passed away”
 
It’s six am, and I am eight hours away from home. This is the text message I wake up to. I set down my phone and lay there.
The hotel room is modern, with sharp edges and a cold surface. It seems colder now.
I turn my head. Laying next to me is my baby boy. He is not so little anymore, but when he sleeps, he still reminds me of the baby I held all those years ago. His little upturned nose, long dark lashes laying across his sweet face. His mouth is open slightly, and his hand is near mine. I reach over and gently touch his cheek.
 
She is gone.
 
The thought seems foreign to me for a moment.
 
I didn’t get a chance to say goodbye.
I had seen her the month before, but it was a whirlwind of people and activity, so visiting with her was short. Matthew said she was having difficulty breathing, but I still refused to accept that she could be close to the end.
 
I quietly rolled over to glance at Matthew.
He is laying in his wheelchair, pillows tucked around him. Blankets piled on top of him. Not much is seen except his head poking through. His mask moving in and out with each breath the machine pumps into him.
 
How will he take this news? A tear slides down my cheek, and I flash through the memories of when I had first met her and her family. So many smiles, so much laughter, even in the painful moments.
 
Anticipatory grief is knowing what is coming, being helpless to stop it, yet still feeling the heart break, even after you have prepared for it.
 
This time is no different.
 
I knew she was in Hospice. I knew she was tired of fighting. She was in pain. She was hurting. And selfishly, I wish she would have held on.
 
She was so loved by so many. A mother to many, and a woman who was known for her friendship as much as for hard work ethic, her love of family, and her laugh. Her sweet and caring nature was easy to love.
 
I doubt I will ever be immune to the sting of hearing when someone has passed. I have seen it almost daily on Facebook for years now, another angel has gotten their wings from this disease called ALS. This may be why I don’t visit the support groups anymore. I meet them, grow to love them, only to lose them.
 
This family is another one I have come to know and love, and it makes the loss that much harder.
 
I had the honor and the privilege of watching a family come together during chaos and sadness and hold each other up.
To say I was jealous would be an understatement.
The strength this family possesses, and the love they have for one another has been inspiring to watch.
I witnessed a man, weary and worn down, still get up every day. Even at times where he probably felt he couldn’t muster up the strength to continue, they circled around him, supporting him, so that he could care for her in her last years. Eyes that hold pain, but shoulders that continued to carry the burden and grief of it all.
 
Her daughters cared for her with comforting hands, helping with showering and dressing. But more than, they were pillars during times when the disease became too emotional for her to hold in. They allowed her her tears and her grief, so that she could show a courageous face outside the walls of their home. Grandchildren that wanted to be with her all the time, no matter that towards the end, there was a constant reminder of her illness wrapped across her face to help her breath.
 
I am not naïve to think they did this perfectly. There is no perfect. And there is no right or wrong way to deal with a diagnosis like this. But if I could look to a family who handled this with grace, support and love…this family came together during the most difficult of times and I am in awe of their strength and determination to walk this journey together, side by side. I wonder if they know how truly lucky they are to have each other. So many other families are torn apart, but this family seemed to huddle even tighter together.
 
I can’t help but hurt for her family now. This woman was giving and kind. She wanted to support others as they traveled the same road she was on. She wanted to lend comfort and wisdom and she wasn’t shy in schooling those about the ins and outs of ALS.
I have no doubt that those who walked away, or lost touch with her after those three letters consumed her life will have guilt. Somehow, I just know she wouldn’t want that though. She has found peace. She is no longer trapped inside a body that refuses to move, and the pain is gone.
 
I lay there for a while longer, staring at Matthew. Do I tell him? Or do I wait?
He must feel me staring at him because he turns his head and opens his eyes. I begin the process of hitting buttons to move wheelchair plates down, and seat positions up, and more buttons for machines that I still hate, the beeping always so loud in my ear.
 
I sit next to him on the bed.
 
“Kathy passed away last night.”
 
Matthew winces. We are both silent. What more can be said? Our eyes fill with tears, but no words are spoken.
 
Our drive home that day was filled with quiet solitude. There is nothing else that can be done. And that is the hardest part of all.
 
And our hearts are broken once again…

sharing is caring…

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Tonight, I want to share an article that was sent to me recently. It has some good thoughts about the stresses that many of us deal with on a daily basis.
For example…Guilt!
 
Oh my! I could write a book about just that emotion!
 
So. Much.Guilt!
 
I do not understand why there is guilt, but it is there in bucket loads. I am never doing enough, trying hard enough, or just the fact that I feel I am “never enough” is all it comes down to.
 
I live with guilt that my children are growing up and will remember their stepfather as someone who was dying during their formative years. Worse yet, I feel guilty that they had no choice in this part of their lives, I simply made the decision for them.
 
I feel guilty if I feel I am neglecting Matthew. I know he is a grown man and can and will tell me when he needs something, but damn if I don’t carry the weight of each decision on my shoulders.
 
While being a caregiver can never truly be understood until you are actually in those shoes, I feel it is always good to try to find empathy and compassion for those who are in a role that we may find ourselves in one day or simply to offer someone a place to fall apart if necessary.
 
Really, the world just needs more people to take the time to learn about the plights of others, to hear their stories without judgement and to, at the very least, offer a bit of kindness. At the most, really try to step up for those they can, and offer empathy.
 
And if you are a caregiver…allow yourself some grace, damnit! It is hard to be selfless and giving and even harder if you are doing it all by yourself. Remember, you are only human, and you are doing the best you can. Some days may not feel like it, but you are worthy, and you don’t need to think years down the road…just breathe, and make it through today<3
 
I am also sharing this article because I am tired, and my words just are not flowing like they normally do. I decided to let someone else do the talking instead. Yet here I am, still typing…
 
Ok..read it if you can..I’ll shut up now:)
 
 

slowly, they all just disappeared…

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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.

a woman’s strength…

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Tonight is not about me.

Tonight is not about my journey, or those around me…at least not in regards to ALS.

Tonight is about her.

Her bravery, her strength. Her beauty and love that shines through her eyes and her smile.

She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.

And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting.

They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward. They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.

She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.
I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,

“Hello world, look at me!”

they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.

I am not moved to tears often and this one left me rocked to my core.

Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.

The world needs more women with your strength and your grace.

I can only hope to one day shine as brightly as you do…

******************************************************************************

Here is just a small piece of her story…

How do you get through two radiation treatments in one day? Two spa treatments, of course!

That’s the positive side. Here’s the ugly side.

One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired. 
There’s no physical reason. It’s definitely mental.

Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.

Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.

“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”

And repeat multiple times.

The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t.

When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.

I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated “Hold it together.” It’s become my inner chant.

It’s all quick. 15 to 20 minutes most days. But it seems longer.

I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day. It’s exhausting.

I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold.

Then I’m done. I hop off the table and wave my tingling arm. “See you all tomorrow” and I go put on my clothes.

I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go.

Some days I just walk out as if nothing happened. Other times I linger to dry my eyes. I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself “Hold it together.” It works.

I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God.

That’s daily radiation. Although today I slipped in two glorious spa treatments … just because.

Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight. Thank you T. ❤️

So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer.

I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors.

I think about all the women who will go through this after me, not just the radiation but all of it.

They don’t yet know it. But they will be warriors, too.

#igotthis

 

Nightly routines…

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It is the same process, every single night.

Mundane…sameness…always the same monotonous events that take place for bedtime.

  • Brush his teeth, but don’t use the minty toothpaste. He doesn’t like that one.
  • Wash his face, but only in certain spots. It makes him chilly to have his face damp.
  • Use a q-tip and scratch the itches his fingers can no longer reach. He gets that look in his eye when you find that good spot, not unlike a dog feels when you hit the magic spot.
  • Use a bit of tissue, and pick at his nose. (I used to feel squeamish getting up in each nostril, but now, my stomach doesn’t even do a little flip flop as my fingers go up and wiggle around, the tissue swiping at any loose snot balls.)
  • One medicine for anxiety, one for sadness. One that is supposed to slow down his progression. We know two out of three of those meds work for certain.
  • Pour a capful of white powder and swirl around until dissolved. (It helps him poop.)
  • Place the pills in his mouth, his tongue is twitching again. Quickly lift the thickened water to his lips.
  • Remove his lap blanket and place the hand-held urinal between his legs. Push his legs apart so that he pees in the urinal and not all over himself.
  • Roll into the bedroom and start a machine. The clicking of air, pushing in and out, his cheeks puffed, as he coughs.  (The cough is weaker now. Nothing much ever comes out.  I can’t tell if I should be thankful for that or not.)
  • He tells me he thinks he may be getting sick. His throat hurts and he feels warm. I tell him he isn’t getting sick and deep down I silently pray I am right.
  • Grab the giant metal arm, attach the loops and hit the button. The arm pulls him up and out of his wheelchair. His ass scrapes along his controller, again. I seem to do that every night.  He gives me a pouty face, as I apologize…again.
  • My face turns red as I pull and twist the metal contraption over towards the bed.
  • Grab the remote for the bed to lift the headboard up, as I simultaneously lower the metal arm down on the bed. Push with my shoulders, and pull his legs out straight, so he doesn’t cramp.

Pay attention, Theresa!

  • Don’t sit him too high or too low. Keep the headboard at a little less than 90 degrees, just the way he likes it.  Unhook the loops, pull the metal arm away from the bed. Tuck it back into the shower, where we can hide it and pretend for just a few hours that it is not a necessary tool for me to move him to and fro.
  • Pull the straps and the sling out from under him.
  • He winces.
  • Place the bandaid over the bridge of his nose. It looks raw and sore again.
  • The mask goes on next. Hit the ON button. It screeches to life.
  • Find the remote for the headboard, which is now buried between his legs and blankets. The dog is laying by his feet. The dog isn’t much help.
  • Laying him slowly back, there is one more thing. Scratches…
  • Grab the baby powder by the night stand
  • Dump it anywhere there is a crevice. (I’ll save you the embarrassment of describing all the places that baby powder goes.)
  • Attempt to roll him onto his side. Not before he whines. He wants scratchy time to last longer. I do not
  • Check for pressure sores. On the back of his legs and his buttocks.

I grunt again…I swear he is more square than he is round.

  • Get his leg pillow just right between his legs. Adjust his head pillow to match. (He asks me to push him more. He isn’t on his side all the way. He will tip back over if he isn’t just so. Several more attempts. Several more grunts)

I give one more hard push…

  • “OWWW, I think you did something to my back!”

I panic! My eyes scanning his body. I can’t imagine what happened. I pause looking him over, his butt cheeks out in the open, legs bent

  • “I don’t think my legs work anymore!”
  • Then he giggles.
  • Rolling my eyes when I realize he was trying to be funny.
  • “Ok, I am going to go lock up.” I say, as I pad barefoot out of the bedroom.
  • “I’ll be right here!” He yells.
  • “Don’t move!” I yell back.
  • I shake my head with a little grin.
  • It is always the same thing…every single night.