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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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.

a bit of normalcy

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There was conversation. There was camaraderie and a sense of connection. A piece of my day, with no illness to navigate, or arrange, or schedule around.

Just me.

A meal served as voices were ebbing and flowing like the musical notes floating through the air.

Beautiful glasses of wine, handshakes and hugs.

The banging of kitchen equipment, and a chef making his rounds, as servers carried trays of delicious food, hustling to deliver plates of deliciousness.

And I sat there, absorbing it all.

I had entered through the back door. There were two small steps before I gracefully pulled the door towards me and glided in. This time, there was no scurrying in the rain to the front entrance for handicapped accessibility.

I chose a seat close to the fireplace. In the middle of a long table in fact, with chairs crammed in as close together as possible.

I didn’t have to try to rearrange the seating for a wheelchair to fit. I simply made my way, and sat where I wanted.

How simple…and how easily I forget.

These moments are few, but so very precious.

A chance to reconnect with others, without the sideways glances.  A conversation with interruptions of jokes or inquiries of the Thanksgiving gatherings, and laughter.

A napkin in my lap, that wipes only my lips.  A glass with no need for a straw.

A quick jaunt to the bathroom, with no worry of space, or who may be in the men’s room. Is there anyone who can be on the lookout? Instead, I push the door that says, “Women” and it is a non-event.

No thoughts of illness…ALS…or caring for someone…

My brain slows. My shoulders are relaxed, and I feel my cheeks smiling, not forced, but a smile born of gratitude for this moment. I feel…..

Normal?

How silly of me…how selfish to want more of those moments.

Hugs goodbye, I walk back out into the rain.

I take my time. Twinkling lights are everywhere, as I feel drops of moisture on my upturned nose.

Being present, and appreciative for all that I have.

Sad the evening is over, but grateful for the home I get to go to.

Who needs normal anyway!?

 

When Santa came to visit…

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He looked like Santa Claus. That’s what I thought the first time I met him. Even Matthew said his blue eyes were twinkling and his cheeks were a little bit rosy. Ironically, he had no children of his own. I bet he has little children following him where ever he goes, wondering if he is the real thing.

That was over six months ago now.

He walked into our home, with his wife following slowly behind.
She was tiny, small-boned and looked as if a strong gust of wind would blow her over at any time. Her clothes were hanging loosely off her frame.
They seemed like one of those couples who were mismatched in every way. She walked slowly in, keeping her head down. Her shoulder length hair dull, and her face looked gaunt. “She looks angry,” I thought to myself. I can’t be sure, but I don’t think it was her idea to come over. He seemed to take up the entire entryway with his broad shoulders and loud voice booming down the hallway. I invite them to sit down for coffee.

They had that deer-in-the-headlight kind of look.

She had been diagnosed with Bulbar-Onset ALS.

That means she was losing her ability to speak. Although she looked perfectly fine, the disease was affecting her facial region. That means, she could walk her massive dogs around the block, and garden all day long if she wanted to. She could still care for herself, brush her own teeth, dress herself or cook a meal, but she was losing the ability to talk. The ability to chew, or swallow foods and liquids. The ability to have facial expressions.
The few times she tried talking to us, her words slurred to an almost incomprehensible moan. The effort to make her mouth form each word was drawn out…so slow… it was obviously irritating to her.
I remember Santa kept leaning in. His eyebrows drawn together, intently focused. He was trying to watch my mouth as I spoke. He was legally deaf. I tried not to groan in despair as he said this to us, a bit louder than normal, which makes sense, since he was reading my lips.
This was an awful combination and would become the biggest challenge for them.
Our ability to communicate was difficult, but we muddled through, and I took down some notes for them to remember for later. Advice about foundations and agencies to contact sooner, rather than later.
They left our home, and I don’t think we were able to lift their spirits or help them feel any better about the situation. Normally, I like to think that either Matthew or I can help one or the other feel a bit less scared. Or at least a bit less alone.

This couple…I don’t think that we helped them at all.

The man with the twinkling eyes has stayed in contact with me, though now it is only through email.
He often writes about his wife, her care and thoughts about future needs. I offer suggestions or contact information for people I think may be willing to help. I don’t think he has bothered with any of it. Hospice is involved now. She has given up. He seems lost.

I am sure she gave up as soon as she was diagnosed with ALS.
Only, he hadn’t recognized it right away.
Her anger and bitterness at the thought of dying this way has left him exhausted. It now makes me wonder if his cheery smile was all a façade. A safe place for her to lay her burdens down.
I know it must be draining him.
I meet many couples who are on the same path as Matthew and I. The diagnosis is the same, but the journey itself poses different obstacles for each person.
I find comfort in knowledge.
When I knew Matthew had ALS, I immediately researched anything and everything I could. I read every case study, medical journal and book I could find. I asked questions, sometimes repeatedly. I wanted to be prepared.
Nothing prepared me for the reality. But understanding some of it has been how I have managed to cope as the reality of ALS for us has been more gradually than for others.
Matthew was the opposite of me.
He waited to learn. He did not search for the answers until it was time to know. He was proactive in ordering every device and item needed to make my care for him easier, but he asked nothing about what he would be facing until it was time to face it.
I assume, as with any disease, one must navigate the path that they feel is right for them.
I try hard to respect those decisions.
After all, who am I to judge?
Yet, how can I stand back and witness the decisions people are making, knowing it is going to make their life more stressful. Often, waiting too long can mean the difference in how the patient will respond to every day ups and downs, and it can lead to depression and anger for everyone involved.
Instead of their last months filled with family and memories of being able to say what needs to be said, it turns into a nightmare of one bad decision followed by another, which in turn means one emergency followed by another. It is my worst fear and one that I will do everything to avoid. I can’t make others think this way so instead I try to gently point out better options if I see them struggling.

“Please submit a grant request for a ramp or a bathroom remodel.”
“Have you considered a support group?”
“Please reach out to as many people as possible for help.”

I guess I am trying to help ease a part of their burden, but what do you do when they will not take your advice?
What do you do when you see that they are losing faith, and the will to fight?

They have refused help.
They have refused support.
They have refused the doctor’s advice.

I am angry at the helplessness of how I feel right now….
It is just one more constant reminder of how little control I have in any of this. I am forced to not only be buckled into this ride for the duration, but also to watch helplessly as other victims crash along the way.
I can’t reach the wheel they are steering to move them out of harms way, and I am stuck to sit back in a ride that I can only vaguely remember jumping on.
And all I can do is wonder, “What is the point of all of this?”

 Matthew Wild

Beep Beep!

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1:45 am

Beep beep!

“What was that?”

I lay there for a second, not really knowing what he is talking about. Matthew hasn’t slept all night, and I can’t figure out if he is just mumbling or needs something.

Beep beep!

I hear it too…

I sigh…the familiar sound of the dead battery in a smoke alarm. I wait, secretly hoping it might stop, but thirty seconds later…

Beep beep!

I decide I better take care of it before it wakes everyone in the house.

I groan…I am perfectly comfortable and all snuggled in. I don’t want to get up. For a moment, I just want someone else to take care of this. Matthew has already woken me at least 4 times in the last 3 hours. I didn’t want to get up. But as is the case in every situation in my life, there really isn’t anyone who is going to take care of this for me. I swing my legs over the bed and make my way up the stairs to where that offense noise is coming from.

There is no choice, I turn on the light in my daughter’s room to see what I am doing. She groans, and glares at me. I look around her room and moan. It is absolutely disgusting! Clothes, shoes, and makeup are strewn around the room. And old coffee cups, and mass quantities of old wrappers, and containers of junk food that had been snuck upstairs and kept hidden in a teenager’s room. I tell her she seriously needs to clean her room, even though I am sure this probably isn’t the time to be having this discussion.

I am fumbling with the smoke detector, trying to find where the battery is hidden. I rip the face off.

Nope!

That wasn’t it. I finally flip it over and see the small slot that needs a screw driver to pry it open. I settle for a dirty fork from the teenager’s bedroom.

I pull the battery out.

Satisfied that it will shut up and everyone can go back to sleep, I go to step off the chair.

Beep beep!

I quickly glance up.

Seriously?

I step back up on the chair. The mutilated smoke alarm is mocking me.

I understand just enough electrical to think I am proficient. I am proven drastically wrong in this moment. I pull out the small attachment of black and red wires still providing electricity to the dreaded alarm.

BIG MISTAKE!

FIRE! FIRE! FIRE!

The entire alarm system throughout the house is suddenly screaming at me.
I am reaching above my head, my shoulders burning from trying to hold my arms up for so long, as I am trying to jam the wires back into the alarm.

Finally…quiet…

Beep beep!

Damnit!

I hear Matthew trying to yell downstairs.

“What’s going on?”

I run downstairs.

“I don’t know how to make it stop!” I tell him, as I walk towards him. He is stuck lying there, his mask on his face, mumbling.
I get my head closer to his.

“What?”
“I have to pee!”

I groaned again…

“You scared the pee right outta me!” He is giggleing, but I don’t find the humor in this situation.

Beep Beep!

I grab the urinal and roll him over towards me.

I am feeling a sense of urgency, but am trying to be understanding to his needs..but I really just want him to hurry up and pee!

Beep Beep!

“Go find batteries”

Sure! Simple enough. I roll him back on his back, sit his bed up and remove his mask. If I have to be awake, then so does he!

Beep beep!

I walk out to the kitchen. The dishes from the night before are stacked in the sink. Food bits are still stuck to the plates. The pots and pans are still on the stove.
The teenager had put the food away but didn’t help with the dishes. Nor did the other two. Oh well! The teenager had gone to school all day, worked and gotten home late. My mood is bad enough that I don’t feel like nit picking, and I was just as capable of cleaning the kitchen last night after all my running around adventures, and tuck ins and such.

Beep beep!

I open the junk drawer. It is referred to as the junk drawer for a reason. Screw drivers, bit and pieces of miscellaneous things that will never actually be put back together are lying in there, awaiting the day I realize they belong in the garbage. There are more batteries than any one family needs in there. But do you think I can find the one size I need? Nope!

Beep beep!
Beep beep!

I look up towards the stairs…
Matthew is trying to yell from the bedroom.
“You need a D volt!”
I know this. I know he knows I know this. At this point, I am sure my children are all awake, so I yell from the kitchen.
“I know!!! And we don’t have any!”
“Look in something that has one, and take it out”

Beep beep!
Beep beep!

I go back upstairs, confused why the beeping is multiplying.
Teenager’s smoke alarm is beeping….and now another one is beeping!
I run downstairs, grab my shoes and tell Matthew I will be right back.
There is no choice, I have to go to the store and get batteries.
I jump in my car, in an over-sized mickey mouse t-shirt, yoga pants and my hair piled on top of my head. I assume there won’t be a soul around.

I assumed wrong.

2:30 am

There are at least 6 cars at the gas station
At this point, I really just want to get in and out!
I duck my head, run inside and grab four D volt batteries! Just in case!
Did you know those damn things are six dollars a-piece!!?
Why I am grumbling about the cost is beyond me, but at this point I am seriously irritated and just want the beeping to stop!
I drive like a maniac home and run inside.

Beep beep!
Beep beep!
Beep beep!

What the…?

I glance in the bedroom to find Matthew is falling over. I have to go and pull him to an upright position.
There are now three smoke alarms going off upstairs. I run upstairs and start replacing the batteries. I am patting myself on the back for being smart enough to grab several packages of batteries.

One smoke alarm, done!

Beep beep!

Hmmm…

Maybe I need to replace all of them before they stop?
Then I hear another one beeping downstairs.
Matthew is yelling downstairs…

“There’s another one down here going off!”

I switch two more batteries…
Still no change.
I run outside, and to the breaker box
I start flipping the circuits, trying to find which one is responsible for bringing electricity to the smoke alarms. No label…nothing…

I try the foyer, the bedrooms and bathrooms.

Beep beep!
Beep beep!
Beep beep!
Beep beep!

The beeping won’t stop!

I am Youtubing videos trying to figure out why. They are less than helpful. I am seriously at my wits end! I am texting some friends, apologizing for waking them, but at a complete loss of what to do. Poor Matthew is trying to give me advice, but he can’t look and see what I am doing, so he just tells me to do what I have already tried doing. Google! I attempt googling the brand. I am looking up the brand of smoke alarm. It says cut off the power supply. I can’t find the power supply!
If the batteries are replaced and they keep beeping, it means the smoke alarm is at “END-OF-LIFE”

Are you freaking kidding me?

Four smoke detectors are at the end of their life?
I didn’t even know they could die!
If I unplug them, the entire house starts screaming at me:
FIRE! FIRE! FIRE!
At this point, the kids just went back to sleep with a pillow over their head.
I am completely at my wits end…

3:00 am

I call 911…

I think this may be one of the most embarrassing moments of my life..

“911- what is your emergence?”

“Hello, this isn’t an emergency. But I can’t get my smoke detectors to stop beeping and I have tried everything”
I am pretty sure I am hanging my head in shame. The dispatcher makes me tell the entire story from the beginning. Yep, I feel like an idiot!

“I will send out a man to help now”
I hang up, feeling sheepish. Matthew tries to assure me that they see situations like this all the time.

Then I remember!

OH MY GOD! The dishes are piled all over, and I made salmon last night!

I don’t have a sense of smell. Yes, you read that right. I somehow lost my sense of smell in the last couple of years, but I am pretty sure the house probably wreaks like fish!
I scramble to start cleaning when I hear the knock at the door.

Damn!

I go to open the front door, and there are two huge guys at my front door, and a massive fire truck parked right in front of my house.

I am literally groaning inside!

The beeping hasn’t stopped but to add even more chaos to the situation, I closed the door, but of course there is another fireman walking in! I now have three huge firemen in my entry way, and my two dogs are going crazy! My old dog, who would let a burglar come in and never make a move, is now vehemently snarling and barking at these men, as the other dog is yelping and barking as well!

I am trying to calm them, but they are going crazy!
Two firemen walk upstairs…while the other one is trying to calm the dogs. Then, one of the dogs decides to pee all over the fireman!
Between the constant beeping, and the dogs barking, and Matthew asking what’s going on, I am literally just turning in circles.
The younger fireman of course walks into my kitchen.
He wants to help clean up the dog mess with paper towels.
I don’t have paper towels!
I am pretty sure I can’t be more embarrassed than I am right now…
Then I look up and realize that two of the firemen have just seen my teenager’s bedroom…
I.AM.Mortified!

At this point, I am pretty sure that if it is going to go wrong, tonight is the night for it to happen.

Suddenly, the beeping stops…

THANK YOU!

3:45 am – firemen leave…

4:00 am – I finally fall back asleep…

6:00 am – middle daughter wakes me up to talk
UGH! It is going to be a long day!

****
Long story, I know, but there is a lesson to be learned here!
Smoke alarms can actually die!
Three out of the four were seven years past their expiration date! My house is only 7 years old. That means the contractor put in old smoke alarms. Here is another helpful tip… put a carbon monoxide detector down low at an outlet. Carbon Monoxide stays low, and if the alarm goes off, it may be too late, as they are often installed too high to make a difference!
Another lesson learned…
Just do the damn dishes…especially if you cooked fish the night before. Those poor firemen. They were above and beyond polite, but inside, they had to be gagging!
I will be hanging my head in shame until the trauma of last night fades from my memory…but if it made you chuckle just a little…well, I guess there is that!

 Matthew Wild