Spend a day with us…

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What does a typical day look like for us?

Let me paint the picture…

I wish I could say we have a set routine, or some sort of structure on a daily basis, but with three children and multiple meetings and activities, children coming and going in different directions, it is basically a “crazy, chaotic hot mess!”  I sometimes laugh at how different Matthew’s life became. ( No, I am not laughing about the ALS part!)

He went from a bachelor, living alone to having a wife and three children practically overnight!  I am so incredibly thankful for his patience and his love for my children. And he’s a pretty good sport about all the childhood phases he has witnessed, (or been subjected too!) in the last couple of years!

So in case you were more than just a little curious, here is an example of what it is like to live our life with ALS…

Midnight to 6 am – Matthew wakes me on average 4 – 6 times to be adjusted.  Often times I wake up to a muffled sound of “Hey hun…”  Followed by a request to help him turn over, or lift the covers, use the restroom, or adjust his trilogy mask, use the remote to adjust the bed up or down, or to scratch in strategic places that could literally be anywhere. (Just let your imagination roam on that last one…)  He doesn’t have the strength to lift the covers, let alone scratch even a little anymore, as his wrists are the weakest part of his body at this point.

Rolling him over consists of me sitting up, and shoving on his hip and shoulder to roll him over.  He is a big guy and without the strength in his abs or hips, he can no longer roll over.   Then his legs get left behind, so I need to re-position his feet.

At least 4 – 5 times a week he will need to use the restroom at sometime during the night.  Gone are the days of him sitting up and walking into the bathroom by himself.  Now, it is all me.  I get up, roll him over so he is laying on his side facing me and then I use a hand held urinal and as he lays there, I hold the container as he goes….I am usually doing this with only one eye open.  And yes, I have been peed on more than once.  Who knew there was a trick to how a man urinates!

6 am – The kids are in school again, so I set my alarm.  I need to be somewhat awake when they are.  They are pretty self sufficient these days, but I still like to be up and spend at least a few minutes with each one.  On a really good day, I might jump out of bed and hit the gym while everyone is still asleep, and knock one thing off my to-do list. If it was a bad night, I stay in bed scrolling through Facebook until I am forced to move!

I help make lunches, sign papers for the kids that they, of course, forgot about until the last minute, and I make breakfast for the kids who want it.  Recently, with all this smoke in the air, I am chauffeuring my oldest more than usual.

However, I have three children in three different schools. So I end up taking two at one time, and find myself in my pajamas and hoping there is no one around to see me!  Then I hurry back to get the third one out the door.  Three car pool lanes, three chaotic arrivals and departures then hurry home, because I have more than likely left Matthew lying in bed.

9 am – I take Matthew’s trilogy mask off ( a machine that basically breathes for him, similar to a CPAP machine, only this one has air that moves in and out, simulating a breath.)  I have to use our adjustable bed to sit him to a 45 degree angle, where I then move his legs over the edge of the bed, and pull him to a sitting position.  Then I lower the bed back down, grab our Sit-to-Stand Hoyer lift, and maneuver the legs of the hoyer under the bed.  I then wrap the bulky giant strap around his back and under his arms and buckle him in.  On a good day, he can lift his legs onto the platform, but on a bad day, I have to lift his legs and position them onto the footrest.  I then hit the remote button that lifts him into a standing position, and I wheel him over to his wheelchair, where I then slowly move him into a sitting position.

I am thankful that we are still able to move him around this way.  The few times I have used a sling and a hoyer lift, it is a lot of work and much slower than even this process, so for now, I will be happy we are still using this method of transfers.

I then make his breakfast, cut up his food, get his drink with a straw and feed him if he needs it.  Or clean up the kitchen and talk to him while he tries to get more food into his mouth than on the floor.  We are generally sarcastic and we find things to laugh about throughout the day…

On a shower day, (every other day) we then repeat the process with the sit-to-stand, only this time, I get him from the wheelchair and lower him onto the shower chair, and wheel him into the shower.  I scrub his body from head to toe, which isn’t easy when parts can’t move.  I usually end up almost as wet as he is.  I wheel him back out, and dry him off and attempt to get his shorts on him, use the sit-to-stand to pull him up, pull his shorts all the up and then set him back in the wheelchair. Shower time now takes me at least 75 minutes.

Then I clean and flush his feeding tube, and various other parts of his body, (have you ever cleaned someone else’s ears?  EEEWWW!) I then have to pull those horrible compression socks on, (this usually takes me about 5 minutes a leg, however, lately, its been getting a little easier…) and if anyone has had the pleasure of stopping by, he refuses to wear a shirt unless we are going somewhere.

12 pm – If I have errands to run, I usually take this time to do that.  Matthew will be either returning emails, or will put his headphones on while he watches his television shows.  If our caregiver is here, he or she, (we have gone through over 40 of them now in less than 18 months!) will sit at the kitchen table waiting for us to ask them to do something…not unlike having a sullen teenager in the house. (This is because I refuse to ask someone to do something that I am capable of doing myself, and Matthew refuses to let the caregiver help with showering and bathroom needs, so they sit there waiting for instruction. So it isn’t all the caregiver’s fault! I just wish they could read my mind and do things to stay busy, instead of me flitting around them, while they watch!)

I will usually make Matthew’s lunch.  If I don’t, he will either skip lunch completely or order Jimmy Johns or some other horrid fast food to be delivered (and he’s always thoughtful and makes sure to buy lunch for the caregiver as well…)  You know, because we can’t ask anyone else to do anything and he is known for his love of fast food, lunch doesn’t get made unless I make it!  ( I have, however, learned not to complain or point out his unhealthy eating habits.  After all, if you knew you weren’t going to be able to eat solid foods in the near future, wouldn’t you eat whatever you wanted?)

Matthew needs to be stretched and he also gets a massage once a week to help with his muscle cramps as they atrophy.  He also goes to physical therapy at the pool. (Mostly because he has a huge crush on his PT!)  On those days, he needs to be loaded up and taken to the pool, or to various other doctor’s appts. or meetings that we may have for foundation work.

2:00 pm – I run out to pick up oldest daughter from the new program she is enrolled in.

2:45 pm – I run to the middle school to grab my middle daughter.

3:00 pm – I drive my oldest to her job twenty minutes away

3:45 pm – I pick up my youngest son from elementary school…if I am running late, I then scramble to text mother’s who can pick him up for me, and I pray they can!

5:00 pm  Cross country, football practice, volleyball, wrestling, car pools, dinner, homework etc.  These are just some of the variables.  Somewhere between kid pick up and dinner time, Matthew will require a bathroom visit.  This is where the sit-to-stand comes in again.  We do that entire process again to get him on the toilet, and of course, we talk about poop every. single. day….

(He also loves to wait for me to put him on the toilet instead of the caregiver!)

7:30 pm – start getting kids calmed down for bed. Teeth brushed, tucking in each one individually can take at least two hours!

9:30 pm- Matthew isn’t tired yet and wants to keep watching one of his shows.  I putter around on Facebook, or write.  My Kindle hasn’t been holding a charge, so I haven’t been reading nearly as much.

At least one child needs something or wants me to tuck them back in. Afterwards, I make sure the house is locked up.

10:30 pm Matthew asks if I am ready for bed.  He usually says it in a way that implies he has been waiting on me!  So we brush teeth, use cough assist, and out comes the sit-to-stand one last time.  By the end of the day, his legs are so weak, I only have a few seconds to move him from chair to bed.  I put his trilogy mask on, and I lift his legs up onto the bed. ( This part is not easy, as he still has tree trunks for legs and they are heavy!)

I usually will scratch him all over because sitting in a chair all day is hard and he is itchy. Some nights, I rub his feet and rotate them to help with the swelling.  Then I turn on his side of the electric blanket, plug his wheelchair in to charge and lay down…

11 pm -And this is where I remember I forgot to grab his remote to control the bed….so I get back up…

Lay back down but… he needs his pillows adjusted…So I get back up to do that…

Then he needs his head moved up or down, or legs put up…so I grab the remote to do that,,,

I play on my phone or read on my kindle till I can’t see out of both eyes anymore..and right when I turn the lights out…

11:30 pm

He wants to roll over…

 

Disclaimer-  The above description is simply that.  A description of how our day goes on most days.  It is not a complaint or a “please feel pity for me” type of description.  This is simply an example of what our days look like. Some days are busier than others. Some days are better than others. 

I am truly thankful for the help that I do get.  I am thankful that we have a caregiver, no matter their qualifications.  I am thankful that I am still able to chauffeur my children to their activities most of the time, no matter how challenging it is getting three children to all the places they want to be. I couldn’t imagine how difficult it would be to have to work full time and manage all of this everyday. I often look back and wonder how I worked part time and went to school full time on top of all of this!

I also remind myself quite often that we are not at the difficult stages yet.  Yes, I know many people have it much more difficult than I do, and I am thankful for the place we are at today.  Like a train going full speed ahead, I am fully aware what lies ahead for us.  For now, when I am overwhelmed, I try very hard to remember that it is just a day.  The next one will look better…or, like my previous post, my perspective will have shifted and the day won’t seem that bad after all!

After all, what’s in a day?!

P.S.  I think I have used this picture before..but it is sooo relevant to my life!

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perspective is a funny word…

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Their lives are full of firsts!

First job..

First day in middle school..

First time trying something completely new… ( Like opening a locker in the hallway, with kids rushing and screaming all around you!  Or being bused to a building full of strangers and hoping you will find a place to fit in!)

With each of these new experiences, they will gain wisdom and insight, and hopefully learn about themselves a little.  However, the only way to gain perspective, is to live.  Each experience gives us hindsight.  And only time and life experiences can help us gain perspective.  It cannot be taught, it has to be lived.

I am learning that my perspective with Matthew and our lives with ALS, and who I am and what I am willing to fight for, and my children, and my life, have completely changed, and I think will continue to do so as time goes by.  Two weeks ago,for just a small moment, my perspective was,

“Poor me, I am all alone in this.”

I bitched and moaned and wailed about my hardships… (loudly, I might add!)

But then, a little time went by and I gained some perspective.

I learned, (which I have always known, but it is still nice to be reminded from time to time) that no matter what, it could always be worse.

I learned that as new challenges come my way, it makes me stronger.  I learned that although this life of mine has not always been easy, each challenge has given me insight and perspective to fight the next battles that have come my way.

Matthew and I have a lot to be thankful for.  Sometimes, I forget that. Sometimes, I get so wrapped up in all the expectations and priorities and demands on me, that I forget to simply be in the moment.  I need to somehow remember that when I have days like I did a couple of weeks ago, that those days will pass.  I will get through it.  It is temporary.

I need to be grateful for where we are today.  Because whenever I think this particular stage we are at is difficult, I only need to remember what it used to be like, how I felt then and how easily I was overwhelmed at the small changes that were the beginning stages of ALS. Now I know that I will find my new normal and we will make it work somehow.  I know in the not too distant future, I will be wishing for things in our life to be as easy as they are right now.  Do you know how I know that?  Because there was a time I was overwhelmed just having to help Matthew dress and tie his shoes every day.  Now, looking back, that part looks so easy now.  That is because my perspective has changed on what I find to be difficult and what I find to be easy.

I think my perspective of friendship has also changed.  I do have friends. My journey has led me to meet people from all over the country.  I have lost touch with some, but others have popped in and out of my life at times when I need them the most.  Each friend is unique in the gifts that they can offer me.  They have been there to hear me vent, often times on more than one occasion.  They have helped, or stepped up when I least expected it, and I need to remember that true friendships are not like those memes on Facebook. They are exactly like the friendships I have today.  They are women who are busy with their own lives, and maybe their perspective is to be a good friend by sending a text, or by carpooling my children at the last minute when they can.  Maybe its something as simple as standing next to me and laughing while we watch our children at practice.  The point is, they are there and my perspective changed recently when I was suddenly more aware of them than ever before.

I can’t help but wonder how my children’s perspectives have changed over the last few days.  Did they walk into school, scared, only to walk out and feel empowered for having made it through the day?

My oldest daughter who is 16 years old, has a lot on her shoulders these days. Today, she started her junior year of high school.  On this day, she also started a new program that is similar to dual enrollment. She will attend high school for three hours a day, then be bused out to the new technical college for classes. She will be learning about resort and restaurant management, along with various other expectations of what it means to be an adult.  She is doing this, at the same time she just started working her very first real paying job.  She was more than just nervous today, she was scared.  I have been trying especially hard to remind her over these last weeks of summer, that fear is often that which is unknown.  Once we walk towards it, it is often less frightening.

My middle daughter began her first day of 6th grade today.  She too,was more than just nervous today.  She was scared.  She remarked about the way her stomach was flipping and flopping.  She worried about her clothes and her hair (a newly developing habit that I have never seen before) and she was scared about how she would get to each class on time.

My son started a new grade, with new faces and new expectations.  He jumped right in, not really slowing down to take it all in but rushing past with excitement and fearlessness.  He has the benefit of not having an all new school still.  He is with old friends and comfortable surroundings.

Their perspectives are changing as they experience new things.  I can’t help but be a little jealous of their carefree lives.  I am still the person they lean on when things don’t go their way.  I am still the person they come to when life is not so kind, when plans don’t go accordingly and when they are hurt.  And I know that this will not always be the case.

I remember when they were younger.  The frantic rush to get them all out the door, the hustle and bustle of small children and work and chaos.  My perspective back then was,” I can’t wait for them to be older!”

Now…my perspective is different.  They are older.  And they need me less and less…and I wish they wouldn’t keep growing older.  I wish I had enjoyed them more when they were younger.

These last couple of weeks, the word perspective has floated in and out of my thoughts almost daily.  It has also helped me to reflect and gain wisdom.  Life needs to be lived, hindsight needs to be learned and perspective needs to be gained if we are ever going to grow and develop.

I can’t even imagine how wise I will be soon…with all this newfound perspective!

House of cards…

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I like to think of this moment as if I were stacking cards.  Each card is a representation of a person, place or thing or thought, or situation.

When I imagine the setting, I am sitting at a table. A look of determination and focus on my face.  I am biting my lip as I stare intently at what I have created.  I’ve built the foundation, the bottom of the pile securely, and with each card I set on top, each layer that gets built, the more precarious it becomes.  I make sure every little thing around me stays far away from what I am building.  This is mine alone to build.

I’m still intent on keeping each card balanced.  I am still gingerly taking another card and piling them one on top of another.  I am so proud of what I have done.  With a bit of a smile, I turn my head ever so slightly, and exhale.  I grab one more card, and slowly, with steady hands, I reach to the top to place it to the next layer…they all begin to sway slowly.  My hand stills in the air, I feel the air catch in my lungs. I will the cards to stop moving. Maybe if I am completely motionless, the cards will become that way as well.

And just like that, all the pieces crumble…

That is exactly what happened to me yesterday.  It wasn’t just one thing that brought it all down.  It was a culmination of each card, placed just so…and then the last one was all it took.

I completely lost it.

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One tear fell, and then another, and before I knew it, I was sobbing.  Gut wrenching sobs.  The kind that is ugly, red faced, snot running down my chin kind of sobbing.  And I couldn’t control it.  I walked as quickly as I could away from everyone, trying to find a place to hide.

I’m embarrassed and ashamed.  Now is not the time to have an emotional breakdown. My pile of cards are haphazardly all over, and all I can do is scoop them all up and try again.  You see, I began building this wall and trying so hard to build it perfectly.  I can’t even describe it in words.  It is literally a culmination of everything, and suddenly, every emotion that I try to stomp down, deep inside, came all to the surface at once.

There have been a few times that as I have built this house of cards, a few have fallen.  Yet, I have managed to quickly repair and rebuilt.  I don’t think about it, I don’t get discouraged.  I simply grab a card and keep going.  Yet this time, the entire thing has fallen apart and I cannot stop the overwhelming amount of emotions that are flooding through me.

I am angry.  I am angry at Matthew’s friends.  I don’t want to load my husband up into a van and drag him around to everyone so he can spend five to ten minutes talking with him.  I want them to want to come visit him.  I want them to realize that it means so much more when they make the effort to come to him, because that effort is getting harder for him to make.  I want them to offer to come take him somewhere instead of me being the chauffeur and the one who has to plan around their schedules to accommodate them.

I am unbelievably irritated when I see Facebook posts of his family and how their lives haven’t changed.  They still go out on the lake, downtown, or anywhere they want to go. No one asks me if there might be something I might have liked to have done. No one offers to come over so that I might make plans.  Or when I find out that family are in town, but have never once made the effort to swing in for even a minute.

I am beyond hurt that I can’t think of one time this summer where anyone asked me if there might be something I might like to do with them.  Where are these friends that I supposedly have?  Because I see them all out doing their thing, but I certainly never got an invite.  Or I get an invite in a future reference, a ” We should do this…” but time goes by and I see them all out doing it, yet I can’t help but wonder what is wrong with me that they never even bothered to see if I was available.

I am bitter when I see other kids getting to have time out on the lake or adventures with family, but my children were not even a thought. I have to plan to do anything with my children.  There is no more spontaneity in my life.  Everything has to be planned in advance.  Heaven forbid we inconvenience anyone else without giving them proper notice.  And heaven forbid their other parent actually step up and be a part of their life.

I am irate at the fact that everyone wants to act like they are there for us, but no one has ever asked me what I need.  Why should I have to ask?  Really?  Can’t someone just step up or show up, look around and think, wow, maybe she needs help getting the kids to an activity, or maybe she just needs a break from her reality for a while.

Then, I feel guilty.  Guilty for feeling the bitterness and anger.  Guilty for hating their ALS-Free lives. This is no one else’s problem, so there is no reason to involve anyone else.  I am glad everyone else’s lives have gone on.  I don’t want to burden anyone else.  I know Matthew doesn’t want to be a burden more than he has to be.  But somedays, I don’t want to tell everyone how great we are doing. Somedays, I want to scream that I don’t want to pick his nose one more time that day.  I don’t want to be the one rolling him over in bed, or getting him dressed and showered, or doing all the little things I do, day in and day out. I don’t want to talk about poop, or how Matthew won’t eat all day in most cases if we leave the house, in case he needs the restroom. I don’t want to worry about whether today is the day we finally go to the hoyer lift full time or if his cough means he won’t be able to eat or breathe soon.

I spent most of the summer finding my happy in my every day.  No matter how mundane.  When I would feel upset, I pushed it aside.  Don’t get upset, find things I can still be grateful for.  And I did a pretty good job of it.  Until I look around and wonder how my life got to this.  How did I become the sole provider and caregiver for three children and a terminally ill husband?  How am I suddenly responsibly for everyone’s happiness and health and well-being?  How did I get to be the adult in charge?

I worry.  I worry every day.  I can’t turn it off either.  I worry about how this is effecting my kids. I worry about the events that are out of my control and how they are impacting my children’s lives.  I worry I am not doing enough, trying hard enough and that there is only me, and that that will never be enough.

I stress about whether my house is clean enough, or if my garage is organized enough now.  I have panic attacks that my car isn’t clean enough, or that if someone stops by, they will find fault in what I am not doing, and they will tell everyone what a failure I am.  Then I immediately get angry that I would dare let someone have that kind of control over me.

I wonder when things are going to get really bad.  I don’t say “if” I say “when” because that is the reality of our situation.  “When” things get bad…”When” Matthew gets sick, who will stay with my children? Who will try to keep their life as normal as possible?  There is no one that has built a connection with them or a bond, and I am expected to ask for help from the very people who don’t even make me a consideration.

This is the rabbit hole.  This is where the guilt and the shame compile on top of the anger and the bitterness and the jealousy.  This is where I want to stop feeling this way, but I can’t.  I don’t want to feel alone, but I am. I don’t want want to be angry at others, when I am probably just as responsible for not asking for help.  How can I make people understand that asking for help is one of the hardest things I will ever have to do in all of this?

I know tomorrow will be better.  That this constant feeling of needing to cry, that I can’t possibly handle one more thing, will be go away.  I need to fall down to get back up.  It’s just taking me a bit longer than usual to find my spunk again.  If it sounds like an angry backlash at those around me, then I suppose it is.  However, I also know that these feelings ebb and flow.  For that, I am thankful.  But I can’t help but wonder…

I wonder what next year looks like…

I wonder, I worry, I think…

I put those cards down, one by one, for each person, each thought, each situation that runs through my mind.  I built my house of cards.  And with each card, I kept telling myself that I was okay, that I was happy, that I am strong enough to get through this, and that I am enough.  I am enough for my children and Matthew.  I don’t need anyone else, I can do this…

Until yesterday when my house of cards came crumbling down.

Tomorrow…..tomorrow I will pick up my cards and start building again. I need to be okay with that.  I need to let all these emotions go, but some days, its like an additional bag I carry around with me. The only solace I have is when reading the support group posts.  Then I realize I am not the only one who feels this way. I am not the only one.  I get a glimpse into other peoples’ lives who have it much worse than I do.  So, I hang my head in shame, feel guilty yet again for feeling this way and I will make tomorrow a new day.

I will pick up those damn cards and begin rebuilding.  The only thing is that I know they will come crashing down again.  I just won’t know when…

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The Boys of Fall…

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“Hey bud, let me give you some advice.”

“Matt!  I know…you already told me!”

Matthew looks a little disappointed that Kaden won’t listen to him.  I lean over, trying to gently remind him that Kaden is just nervous.  This is his first time playing tackle football.  I look in the rear view mirror. His shoulder pads look entirely too large for his little body.  He stares out the window as we drive towards the football field. I look at Matthew.  He seems just as nervous as Kaden.

Matthew is beyond patient with my children.  Having no children of his own, I know that he is enamored and intrigued by them.  He has known them for four years now.  He has seen them grow and change.  He has seem them at their worst and seen them at their best.  He is more supportive and encouraging of them then most fathers I know.  And he is beyond excited that Kaden is playing one of his favorite sports.  A sport he grew up playing, a sport he helped coach and one he is still passionate about to this day.

We pull up, trying to find parking. There are few options nearby, as its a football field surrounded by homes. Parking consists of anywhere a car can maneuver a spot along the curb.

Matthew unloads from the van and we are trying to find a place for his wheelchair to get over the curb.  It’s an older field, so handicapped accessibility wasn’t a well thought-out plan in those days.  He takes to the street till he finds a break in the curb.  I have to follow Kaden into the shop area to get his helmet adjusted and to find his coach.  There are parents everywhere, kids taking to the field. I have no idea where I am going or what I am doing.

It’s chaos. Parents, mostly mothers, who are gabbing, excited to see other moms they haven’t seen since school ended, are standing in their circles.  Dads are grabbing their son by the face masks and shaking their heads up and down, side to side.  Thankfully, I know one of the men who organizes the league.  He pulls my son over, and does the same ritual.  Making sure my son has his gear, we head out to find our team in the sea of helmets and pads.

Matthew is stuck.

Not literally, however, he can’t get anywhere on the field.  The handicapped area has a three inch drop onto the ground.  The sun is hot and this is where I get grumpy.  I completely understand that most people take for granted curbs and edges.  They have no concept of the difficulties of what it takes to get a wheelchair from point A to point B.  I do understand, and sometimes, it gets beyond frustrating.  Something so minor, can end up being such a hassle. Thankfully, a friend lives across the street and came over with a plywood board for Matthew to use as a little ramp.

I had every intention of getting my son situated with his coach and then leaving.  Two and a half hours seems like a long time to sit and watch nine year olds run drills.  However, this is where my bad parenting gets overruled. Matthew is adamant that we sit and watch him practice. I would prefer to leave and come back.

Matthew loves going to see my kids play in their sports, or perform in their activities.  Sometimes I think he enjoys it more than I do.  Don’t get me wrong. It’s not as if I don’t like going.  I adore my children and love doing things with them.  I just have three kids. Add all of those things up over time.  That’s a lot of activities!  Then when you add a husband with a wheelchair, and certain needs, and its a lot to take on some days.

Like taking your son to his first football practice.  No big deal. Now add to it that nobody thought about wheelchairs, and it becomes…complicated.

But, as I have learned throughout this journey, it’s easier to go with the flow than it is to get pissed off about the things I can’t control.  And things have a way of working themselves out. Sometimes, you just have to have a little faith…

Whether its the friend who happens to have the right size of plywood to make a quick little ramp, or the league coach who helps tuck my son under his wing and helps me out with gear and equipment I know nothing about, knowing I am one of those moms and am completely lost.

Or when a little boy is all sweaty and tired after his first practice and Matthew offers one last tidbit of advice and this time, he listens…

“Ok buddy, the best time to let one rip is while you’re in the huddle!  But you can’t laugh, you gotta keep a straight face!”

(I’ll bet you can imagine the glimmer of mischief in that little boy’s eyes and the giggle when he realized he has practice again tomorrow!)

now…

I had every intention of writing all summer long. Each day I was going to devote time to mastering this craft.  I would be driven and focused and use my time wisely!  I would blog daily, with quirky phrases and deep insightful wisdom for all who travel along the ALS journey.  And yet. days have passed and other priorities have popped up, each one more pressing than the last.

First, I had to reorganize the garage.  It was incredibly important that everything had a place, and the items collecting dust be donated.  That was in June.  Then I had to get the girls’ rooms decorated.  Then I needed to reorganize the pantry.  Then there was the trip we took and the backyard that had to be landscaped!

Then I thought that if I had my own office, I would have my own space to write.  That was it!  That was all I needed.  So I moved my son’s room upstairs so that I could have my very own space to call my own.  My very own refuge.  A vacation oasis that would by my place to sit and write those next best sellers, or to blog about ALS.

Well, that was several weeks ago…

Now my excuse is that the office isn’t quite my oasis yet…but once I decorate it…then! Then it will be perfect!

I’m beginning to see a pattern here…that needs to stop…

So, I have decided to start making my writing a priority. Just like I have started making me a priority again.  It isn’t easy.  There are mass feelings of guilt and shame.  It will be a daily struggle and it will require some serious time management on my part.  It will be arguments in my own head that I will need to face.  And I need to listen to myself when I tell the guilt-ridden part of me that its okay for me to do things for myself!  That I don’t need to constantly be taking care of others and that this is good to have some time just for me.

When I began writing these little ALS facts of the day, I had big intentions.  I would write daily about our life, so others could see what it was like to experience this.  However, I let people put me down, and I let my own insecurities get in the way.  And..I let my life get in the way.  So while in one way I should be mad that I let even more time go by with nothing to show for it, I refuse to feel bad for that.  At least I have been busy living! Which is more than I can say for most.

My fear is that these ALS facts will simply turn into an avenue of me complaining in a poorly written diary.  That is not what I want this to be.  However, maybe there was a reason I couldn’t come up with a wittier name. Maybe it truly should be just about little facts about ALS every day and what our lives are like now, with those three letters looming around us all the time.

So, hopefully I can get out of my own way and start writing more often.  For those of you who may follow me, I hope you enjoy the new  approach.  I promised personal and I guess it’s time I deliver on that.

After all, why sensor it?  It is messy, and ugly and dirty.  It is beautiful and funny and at times endearing and heart-wrenching.  It is also a journey worth writing about.

So I guess, tomorrow?  Same time, same place?

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Stages and transitions…

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She jumps up onto the examining table.  Her tiny arms and skinny long legs she hasn’t quite grown into are dangling through the paper gown that is four sizes too big for her.  My son crawls onto my lap. I hold onto him, loving having him there.  He seldom cuddles like this, but I know at this moment, he is trying to be brave,  yet wants his mother to hug him and assure him that all is okay.  Neither of them want to be here.  Wellness checks are never fun for children, especially when shots may be included.

Both my children are being goofy to offset their nervousness.  The doctor walks in with a smile, and they sit up a little straighter.  My children have seen this doctor every year for the last six years.  I am incredibly grateful that they seldom see her for anything other than their yearly wellness checks.  They are seldom sick. I wonder if the doctor remembers us.  I can see her checking her memory bank and trying to recall details about each child.  There isn’t much to recall.  A dog bite and a bicycle accident four or five years ago for my daughter, and thankfully my son hasn’t required stitches or had a concussion lately either.

I am struck by how big my children suddenly seem.  They are no longer toddlers or small children.  They can answer the doctor’s questions, so I stay quiet for the most part, simply watching them. I jump in to help them here or there but for the most part, the conversation is now between doctor and child.  They blush when the doctor asks about their oral hygiene.  I think I may have blushed as well.

They are growing right on target, and their eyes are perfect.  I glance at the baby scale.  I remember when they were babies, feeling overwhelmed trying to gather up 3 children to bring into the doctor, to get weighed and measured.  The diaper bags, the toys and snacks to keep them occupied as we waited.  Dreading the immunizations, yet feeling super proud, because my children barely fuss at the needle intrusion.

Where did the time go?

How did I enter into a new stage of life and I didn’t even realize it? Isn’t there supposed to be some sort of monumental moment that stops us?  We should be given some sort of notice, shouldn’t we?  My children are now 16, 11 and 9.  I no longer have to haul around that bag full of items I may need at a moments’ notice.  That phase is over.

Why didn’t anyone warn me that these life stages would go by and I wouldn’t realize it when they were happening? I am struck by the differences in life stages and how we transition into each and this makes me recall the day before.

The day before, Matthew and I had walked into the local non-profit hospice center.  We had a meeting that would be held there. I really hadn’t thought much of it, until we parked.  Suddenly we are outside this beautiful building, with flowers of various colors, and a brick wall with names engraved on glass…”In Loving Memory”

It is not easy to walk into a place like that. Regardless of how beautiful it is, the warm and inviting colors and engaging staff members who try their best to make you feel welcome, there is still the knowledge that this is a place where people come to die.  These people are at the end of their life stage.  I wonder if anyone told them this was coming before they got there?

I assume more people know as they get to a certain age it is coming.  But what about those who are too young? What age is too young? Matthew is only 44 years old.  He shouldn’t be at that stage yet.  Maybe that’s why ALS is so unfair.  It seems to happen to anyone, and there is no warning.  There is no one to explain that they no longer get to experience all those life stages.  They have been cut off, and there is nothing that can be done to stop it.

We were given a tour, including how each room is designed with the family in mind.  I see some gentlemen at the end of the hallway.  Are they visiting a grandparent?  Or is it a parent?  God forbid it may be a child.  They walk by, giving us a slight nod.  I am sure they are just as curious of us as we are of them.  I look over at Matthew, trying to gauge his reaction to this place.  As usual, he shows nothing but polite curiosity.

I can’t help but wonder if everyone who walks into a Hospice facility feels it.  Does the energy stay here, or is this all in my imagination?  It is a quiet sadness that is permeating and ever present.  We eventually end our tour and head to a quiet room to talk about future foundation goals and work.  Thankfully, she directs us to the kids’ room.  I’m not sure, but I think Matthew is just as thankful as I am at being in a room that is less about death.  The board games, crayons and movies are cheerful. I sigh.  This I can handle.

Our meeting is over and I load Matthew into the van.  We both sit there quietly for just a second. Each lost in our own thoughts. I turn the key and back up, driving away. I look over at him and ask what he is thinking.

“I’m not supposed to be there yet.”

I give a half laugh.  I agree.

It is not a new thought.  I know the statistics are not in our favor and the chances of us being there sooner rather than later are higher than I want to admit to.  We both agree that the place is a well-thought out, beautiful facility.  It is filled with caring, gentle people who understand that that transition is just as important when a person leaves this earth as when they arrived.

So this brings me back to watching my children talk to the doctor about the safety of car seats and seatbelts. My daughter grimaces but puts on a brave face when the doctor tells her she is due for two more shots.  She is at a new life stage.  One of emerging independence, along with her siblings.

I am sad at how quick time continues to fly by for me.  One minute, I am just like my daughter, trying to figure out what I want to be when I grow up (Something I am still trying to figure out.) The next, I am a new mother, with babies and feeling pressure to be everything to everyone and to do this well.  They seemed to always be in diapers, or crying or needing me for something.  Now, they are less likely to be crying, but they need me less and less.  I will soon be seeing my children leave home and begin their lives.

I am more aware of the gift of life than ever before.  For that, I can be thankful.  This experience with Matthew has taught me to be more mindful, to try to be more present.   I don’t know at what age my stage of life will come to an end.  The older I get, the more I hope that stage is still years away.  I have so many more things I want to experience in this lifetime.

I wonder if Matthew feels cheated or robbed of these experiences?  I do know that he seems content on most days and thankful for his memories as well as what he still gets.  This lifetime isn’t over yet, and he continues to show me that he is living, regardless of what obstacles have been placed in front of him.  He shows a grace and dignity at his journey that few his age would.

This is a reminder to me of how fragile life is.  There are no guarantees, there are no assurances that we will all be given the chance to enter each life stage to its fullest.  However, for those who’s lives have ended short, regardless of why, we should honor them by living each day to its fullest. Who knows when someone will be coming to visit us as we transition into our final stage.

One little crack in the dam…

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The music is loud and not at all inviting.  The band is the opening act, but their guitars sound more like they are being abused rather than played.  Still, we continue walking towards the noise.  The park is filled with people milling around, sitting and chatting with friends, and children jumping up and down or racing around the blankets sitting on the grass. It has been so incredibly hot this day, but the sun making its way closer to the horizon and the breeze coming from the lake is starting to spill over onto the crowd.

We walk up to the entrance, and get the customary ink stamp on our hands that says we paid our dues and are welcome to come and go as we please.  Matthew’s brother had extra tickets and wouldn’t let me pay.  Before I can argue or even say thank you, we are instantly seeing faces we know and many more of those we don’t.

I am scanning the crowds. I glance to my right, and I notice his legs first.  I don’t have to see much else.  The wheelchair and his limbs are so familiar to me, I don’t even have to know who it is to know.  He has ALS.

I have met this man before, but is has been a while and as always, I find myself jarred for just a second.  I have seen hundreds of pictures of people with this disease, and have met dozens of people with ALS. It will never get easier, regardless of the fact that I live with it every day. Each individual may look completely different at the beginning stages of the disease, however, this man has been living with the disease for a couple years now, and the quick glance of his frailty tells me so much in so little of a glance.

My eyes quickly sweep over him, noticing the tube protruding from his neck, yet his beard is neatly trimmed. His respiratory was affected quickly after his diagnosis and after a scary situation, he had an emergency tracheotomy done to keep him alive.  That was over a year ago. Now his arms and legs have the signature look of having lost muscle, the atrophy that is ALS has made his limbs not only weakened, but has shrunken them to almost skeletal proportions.  Yet his face appears full and healthy.  I can’t tell if it is the beard that gives him a fuller look.  I think I am shocked because this is the first time I have seen him in person in almost two years.  His facebook pictures were deceiving.  I hadn’t realized he had progressed this far.

I wave and smile. I am happy to see him out and hopefully enjoying the day. I know the music isn’t enjoyable at the moment, but this too shall pass, and the entertainer for the evening who is scheduled to begin soon is a beloved favorite in the area, so I can patiently wait till the screaming guitars come to a stop. I look around him and see he is surrounded by his parents, and maybe others who I would assume are friends’ of family.  There is no way to get closer to him to talk to him, the divider at the entrance, the loud music and the people sitting around make it impossible for Matthew and I to navigate over to say hello.

We have barely made our way past the ticket takers and volunteers when more people come walking up to us.  I look down at Matthew.  His own arms resembling so many others with ALS in those photos.   His arms have that signature look as well.  The muscle atrophy has shrunk his arms and his hands. His wrists are now unable to bend willingly back and forth.  His hands no longer able to clasp, or stretch out. They are permanently held in a half closed position.  He raises his left arm just barely, trying to reach out when people go to shake his hand and they in turn, quickly switch from right to left and do a quick little cupping of the fingers.

Those who know Matthew wave, or come over for a quick hello.  I am used to this.  It is hard to go out in public without running into people he knows.  He was born and raised here, and these functions around town are some of his favorites.   I often times just stand there smiling.  If I am lucky, I remember some of their faces, if it’s a really good day, I can remember their names.

Eventually, the main entertainer for the evening begins his show, and people start two steppin’ and line dancing anywhere they can find space. I say this often, but I sure miss dancing with Matthew.  We were hoping to win a prize or two or even a basket from the raffle items, but our time was limited, so we started heading back the way we came.

The man we know who also has ALS had left by then, but his mother came over to visit with us. We asked how he is doing.  We know a little about his story and while his story is far from unique it is still sad to hear.

He was diagnosed with ALS after also having been diagnosed with MS for years before that.  His wife left him last year. His parents care for him, even though they are both in their seventies, there is little money for a caregiver to help. It is a very stressful situation for everyone involved, but my heart especially breaks for his teenage son.

These kinds of stories are no different than the ones I read every day on my support groups on Facebook.  Those private groups are meant exclusively for caregivers of someone with ALS.  It is meant to be a safe place to vent and say the things that need to be said so the person caring for them feels supported by others who are going through the same thing.  It is a place to cry, to ask  for help and to ask opinions.

This man’s situation is not much different than about half of the other’s I see on these sites.  He is angry.  He is bitter that this is his story.  He wants a different outcome.  He probably feels cheated.  If I had to guess, he chooses to live for his son, but maybe a part of his anger fuels him as well.  I don’t know.  I haven’t talked to him personally. I can only piece together my opinion by what I have read from others or have heard about his story along the way.

I am sad for his family as well. These will be the memories they are left with.  Yet, I can also relate.  People always ask me how Matthew is doing, and I tell them that Matthew handles this situation better than I do.  And its so true!

I need to backtrack just a little to a conversation I had with Matthew the other day. I was frustrated about something, now I can’t even remember what it was.  I was venting to him and I asked him why he was always so forgiving and calm about this whole situation.  I asked him why he never got angry, or why he wasn’t like so many others who were cursing people around him, or even cursing that he got this damn disease.  What he told me made so much sense.

He told me to imagine a dam.  His emotions are behind that dam.  As soon as he lets one thing break through, like disappointment in how he is treated by someone, then the dam leaks.  If he continues thinking about the things he can no longer do, that leak in the dam will only get bigger. Eventually, thinking about the negative, about ALS, about dying, about wanting to have deeper relationships with family members before it’s too late, about alcohol abuse, about friends that have come and gone, about not walking, about not being able to dance, about not being able to hold me or help around the house….All these things are cracks in that dam…. and he doesn’t want that dam to break.  So he focuses only on what he can still do, and the things he still enjoys and the people he does have in his life, and the experiences he is thankful he still gets. This in turn keeps his dam of emotions protected, with no cracks.

Now let me return to when we were visiting with this family. I felt so much sadness but also guilt.  She told me she wished she had the support that we had.  She is caring for her son who has ALS, and I am caring for my husband.  However, the difference isn’t in the amount of money we have versus them nor is it about the caregiving support that we have provided by the VA versus their family who has to pay out of pocket.  I am sure that it would help tremendously if they had that kind of help, so I don’t mean to downplay that part at all.  I can’t imagine how scary it would be to have so little resources to care for someone you love.

What I mean is the difference in attitude and spirit.  Matthew handles this with far more grace than even I give him credit for.  It must take tremendous strength of willpower to focus everyday like that on only positives.  It must take extreme fortitude to continue to move forward everyday, knowing what lies ahead.  We have both seen the road, and it is going to be rough.  He often tells me that I have it worse than him, because all he has to do is sit there, I am the one doing all the work around him.  It certainly validates my feelings when I am feeling overwhelmed!  Yet, he always shows me how much he appreciates me, and he always tells me how grateful he is to have me in his life, caring for him.  Sometimes, I think I get so wrapped up in my own sorrow, I forget how strong Matthew has to be every. single. day.

As we walked away, I looked down at Matthew. It is cooler now, the intense heat for the day is now a memory. The sky is filled with the beautiful hues from a sun ready to set.  The lake and mountains in the distance are just as calming to see far away, and as always, helps me feel centered. I can see he is looking around, taking it all in.

I asked him what he is thinking.

“I can’t imagine being angry like that.  I am just so thankful to be alive!”

And for a moment, the cracks in my dam seal up, and I am thankful that my situation doesn’t seem that bad…