The Good With the Bad

I realize that my posts of late have been themed a lot toward my dad and what he and my family are going through on our new journey into life with ALS. I cannot help that, so much. It is constantly on my mind. I know that they can also be a little bit dark. There are those scary thoughts and emotions tumbling through. I thought today could use a little bit of sunshine, as it were. :) Here is a (maybe short) list of some of the good that has come along with the bad.

1. Love. 
    We have a chance to tell our dad/husband/uncle/brother/son/friend how dearly he is loved in this world. He gets to know that he matters. He gets to know *why* he matters and what a difference he makes in our lives. We get to tell him how much we love him.

2. Goodbye
    We get to tell him goodbye. This is a privilege not everyone gets. By the time his soul leaves his body, we will have told him goodbye in a thousand ways. Sure, we aren't always saying the word. However, I believe in some way that every time we talk to him - no matter how normal the conversation - we are also saying a little piece of our goodbye. 

3. Family
    This kind of experience hits all of us in different ways at different moments. There are stressors like crazy. Through all of it, there is the drawing closer of our already-tightly-knit family. My sisters and mother, who I already love and would kill for, mean the world more to me now than before. I am clamping my heart tightly around each. We are hanging onto one another for dear life.

4. Faith
    I resist the idea that faith is personified in being okay and looking okay. I resist the idea that a person's testimony is at risk if they show how vulnerable and aching they are inside. To the contrary, verses through the Bible remind us that He is our strength during our weakness. We are reminded to lean on one another, to bear one another's burden. I do not trust people who put a high value on looking put-together even among their closest friends. These are not honest people. I hurt for them, closing themselves off from comfort. My faith is a rock, an anchor, a grounding point in a rough time. When I am not calm, my father is with me. This experience challenges and cements that faith in ways other points in my life have not. 

5. Friends
    Grief is awkward. It is awkward during and after any traumatic event. Grief will bring friends closer or drive them away. People contact you to tell you that you are loved or thought of. They come out of nowhere to support you. Going through this experience feels very isolating sometimes, it is true, but it also reminds us that we are not truly alone. There are people out there who care.

6. Prayer
    As if life itself wasn't hard enough to keep a person on their knees, along comes ALS. There is no specific way to pray. Sometimes you can only say a word ("Help!). Other times, my heart comes tumbling out in a million words and thoughts. Prayer is good for the soul. Prayer comforts. Prayer calms. Prayer breathes when the soul is suffocating. 

7. Children
    My babies have been precious beyond words from the years I lived before they ever came along. They are infinitely more precious to me now. I am determined to begin to take care of myself for their sakes. 

8. Health
    Number seven brought me to this one. This experience is teaching me that we don't always end up with expected illnesses. How careless I have been to allow my body to become so unhealthy. It truly does affect them. Pray me some strength on that one, because this is a struggle I've had now for years. 

9. Memories
    Living with such a harsh reality makes the memories we have already made with my dad, my parents, and my family as a whole so much sweeter. It makes each new memory that much more invaluable and coveted.

10. Time
      You've heard all of the cliches about time before. You already know that it is precious. Time right now is at a premium and we are all so very aware of it. It is a highly-valued currency more precious than gold. May we spend it wisely.

Anyway, that is all I have right this minute. I know there are more, but I really do have to run. This experience is painful on so many levels. Admitting that doesn't mean that I don't see the good. Hurting doesn't indicate a lack of trust or faith. Admitting to the things I fear does not mean that I am not also begging God for His mercy and seeing it where it shows itself. 

We (my family) are leaning heavily on the Lord, each other, friends, and family to get through this thing. It is tragic and beautiful. May we ever draw closer to one another and to God. May He be merciful to us all. May you, reader, see this and understand that we have not given up. <3 

We have started a GoFundMe Campaign on my parents' behalf. Please consider sharing it on social media.

Winter Days

This blog post from 'this day' in 2014 made me smile. It was on an old blog I no longer use, so I thought I'd move it over here:

--------------------------------------------------------------------------------------------------------------------

Ah, the long days of winter. 

After the absolutely horrifying drought we had in 2012 I swore that I would not complain about the snow – which is so necessary to prevent another summer dry spell. I do not complain about it that much anyway because get this, I am aware of the fact that I live in the northern United States! lol

This year, however, is testing my limits. I tend to keep my kiddos away from group activities during the brunt of flu season, I tend to stay in when there is more ice than traction, and I tend to enjoy the wintery white from the view out my window or play days in the yard. All of those things add up to some serious cabin fever! lol 

So this year – this fresh, crisp, brand-spanking-new 2014 has consisted mostly of talk about “polar vortex” and trying to freeze-proof the house against the sub-zero temps the vortex brings.

Today calls for something different, though. Some more physical activity than we’ve been getting.

Perhaps a dance party to oldies? That is ALWAYS a fave! I’m sure we knock a little white dust off of the roof with our near-yell volume singing along. 

Maybe today calls for a water fight in the bathtub!  Nothing makes the kiddos happier than splashing the entire room and soaking their mother with watery antics. 

We could always have a 2 minute anything goes jump on the bed party.  Those are a big hit, too, especially when the two littles go bouncing and rolling when Mommy takes a turn.

Whatever this day calls for – be it a mini-marathon set up around the living room and down the hall, or a speed round of hip hop dancing, or even noisy karaoke in the living room – it calls for some life. 

What do you do on those cold, dreary, it-has-been-too-long wintery days?

See Them

Last night was somewhat frightening. 

Two of my sisters had talked to my dad earlier in the evening and found that he sounded completely terrible. He was so weak overall and had trouble speaking. They feared that it would be his last night on earth. We prayed... oh, how we prayed! Friends and family joined in with our request for prayer. 

Dad began to feel better. He even sounded better by the time I called. (I needed to know if my mother needed us on standby.) I was heartbroken inside but solid during the worry. 

What can I do? Call for prayer? Call for help? 

I have to have something to *do*.

It wasn't until after my dad answered the phone and told me he was starting to feel a bit better that I fell apart. I got off of the phone in a hurry (so I wouldn't wear him out all over again) and completely lost it.

It had hit me, you know? The realization that scares like this are going to happen again... and again... and again, until one day 'the real one' comes. 

-------------------------------------

ALS is a brutal monster. We are living in this state of limbo. Life right now is a tree on the edge of a cliff with my dad hung precariously out over the ledge on a frail limb. As his body fails him, the limb becomes ever unstable. At some point, the weight of everything going wrong in his body is going to outweigh the strength of the limb protecting his life and he'll be gone. Forever.

I keep trying to change my course of thoughts with this disease. I am trying to change what I tell myself inside my head about what is happening to my dad. I muscle my way through the day for my children. I collapse into a heap when my husband comes home and offers me his arms. 

"He is LIVING with ALS," I tell myself. 

This is my mantra. He is living with ALS. He is living with ALS. He is *LIVING* with ALS. I tell myself this over and over some days. Focus on 'living'.

I have to tell myself this because otherwise I am stuck thinking the other thing. You know that thing... that harsh "my dad is dying" thing. :( 

My dad is DYING!? Is this true? Can he really be dying? Isn't he technically living? Shouldn't I be looking at this as living? He is alive, therefore he is living.

"He is LIVING with ALS."

He has to be living. The other thought is unthinkable. And yet, every phone call home says the opposite. Listening to the reality of my mother and his daily lives confirms it. This is not living. This is existing, not living. This is losing more of his life every single day in some micro way. This is dying... slowly. 

-------------------------------------------

What must my dad be feeling? What is my mom feeling? Mom is more open about her thoughts and emotions than he is. This is hard for her. No, hard isn't even the word. This is brutal. This is gut-wrenching. This is something you wouldn't put your enemies through, it is so cruel and painful.

"Just rest. Just stop everything else, sit down, and rest."

She can't, though. Not really. There are a million small things that she needs to do for him and for herself. Everything she does, even the minutia that adds up and eats up the entire day, is to make their lives easier. She is exhausting herself trying to make this whole thing easier for both of their sakes.

------------------------------

Visits wear them out. I don't mean that they are tired after. I mean that it now takes two days for him to recover from the energy of a visit an hour long or better. When they have to leave the house for a doctor visit, it is even worse. The recovery time is longer. Because of this, visits with them need to be limited.

This is hard on both of them, too. He wants and needs to see people before he slips off into the beyond (someday?). We need to see him. We need to know that he knows how loved he is. There are family and friends who want to support them both. This is the way to do it. Put action to words and show up. Take that time to tell him you love him and care for him. He needs us.

She needs us too, though. People forget that.

She is doing this alone. She feels isolated and pushed so far past her breaking point. Everyone is here for him right now. Everyone wants to sit and chat with him. It is hard to see past him and look at her, even when you are staring her in the face. 

Can she get you a drink? Are you comfortable? Please take off your shoes before entering. Yes, it makes a difference. No, she cannot fight about that right now. Have a seat. Hang on a sec, she's got to get him this, get him that, etc.

When everyone leaves, she's back up and running. The floors need to be vacuumed. The furniture needs lint-rolled. Seriously, any allergen at all is bothersome. Cleaning, constant cleaning, wearing herself out so that at the end of the night they can both breathe. Calls, visits, exams, errands, meal prep, baths, helping move, dress, feed, wash, do laundry... virtually a million things keep her busy from the moment she wakes up to the moment she falls asleep, listening to make sure he is still breathing. Is tonight the night? 

We need people to see them both. 

We need them to see him and to show love to him. We also need people to love on her. Ask if there is something you can do while you are there. Make your visit about her comfort, too. He gets priority, I get that. I really do. He has less life left in him than she does right now. His time is limited. But don't forget something. When you are married, this is not a journey only one spouse takes.

She is dying with him but then she has to keep living after. 

He will move on to Jesus and she will be left, shattered. With fatal disease, the time is *now*. We will be caring for her exclusively after he is gone, that is true. However, we cannot afford to care for him exclusively while he is still here. She *needs* care, too. His feelings must be considered *and* her feelings must be considered. She is his caretaker. Whatever we can do to strengthen her immediately benefits him. Seriously. Literally, everything we can do to help her directly helps him. Caring for her *is* caring for him.

She's had four hours 'off' in all of this time. Four hours where she wasn't caring for him in months. It is doing her in, emotionally and physically. Exhausted isn't even a strong enough word to adequately convey what being a full-time care-giver does to a person. Nobody can handle that alone. I've got to step up my game. 

Look at her. 

See her. 

Help her. 

Be there for her as much as for him.

See her.

See them. 

See the person who is suffering from the disease.

See the caretakers.

See them.

Help them too.

We have started a GoFundMe Campaign on behalf of my parents. Please consider sharing it on social media. 

Are We Done Yet?

The fighting... my soul! The fighting has gotten out of hand. 

Let's forget the protests and marches for a minute. Zoom in on something small like, oh, any conversation thread on the internet these days. Threads are dripping for miles off of news articles, fake news articles, blog posts, posts on pages, posts in groups, posts all over the place. They don't even have to be related to politics at all. It seems every post you find always gets dragged straight back into politics or women's rights. 

Now, I have thoughts on these things. I do. Mostly, though, I am a watcher. I am watching, reading, listening, and trying to learn. My opinions are not valuable enough to share at the moment because I'm not always right.

There is one thing I do feel fairly confident saying, though. We have become our ugliest selves. We are safely behind our screen and 'standing up for ourselves or others' with our vitriol. Only, we are not. We are bathing in the anger of other people from our own home. We call our side of things a passion and their side crime against humanity. The result is the same all the way around, my friend. Nobody believes they are wrong and *nobody* changes their mind.

We don't have to be the bigger person when the opposing view chooses to be childish. I am reading that statement a lot. "I don't have to tolerate intolerance!" I see that one even more often. It seems, actually, that the main justification for behaving like hellish, hateful minions is, "But they do it first! They've always done it! I am only returning their own behavior!"

That doesn't stand up in parenting and it doesn't hold water in life, either. If my child is screaming at her sibling, I will not allow it. "Yeah, but SHE STARTED IT!!!" No. Just, no. Be the better person - both of you. Take the time you need to calm down and we will discuss this when we can do so reasonably. 

So, I ask with the exhaustion of a mother (citizen) whose children (the world) won't stop screaming. Are we done yet? Are we going to take responsibility for ourselves, one person at a time, and step back away from the keyboard until we can use human dignity with our fellow man? Are we going to remember that we are adults and that our *real* voice is best heard in contact with our state, local, and national representatives? 

This world hurts. There is pain everywhere. We are all hurting. Can't we just step outside of ourselves and realize that someone we insult over the internet is a whole entire human being worthy of love and respect? 

"Well, I cannot and will never respect it when... x, y, z." 

Yes, angry person. I get it. I'm not asking you to respect or tolerate ugliness. I am asking you to redirect your voice back to where it matters. Call your reps. Tell them those issues that matter to you, matter. Be the voice of the people in the only way which affects real change. If we go back to directing our voices to the government rather than each other, I guarantee it will have an impact. 

There are enough of us to do this, you know.

"Well, my kids need to see that I stand up for x, y, z. I am raising strong children who will matter in the world! I will not allow them to be trampled by my silence!" 

Duh! That is my entire point! They need to see you DOING. So go, do! Join a peaceful protest. Let them be near when you draft emails or letters. Work at a shelter, a soup kitchen, a pantry. Donate time, money, clothing, needed items. Human rights, activate! Put the phone on speaker when you call those reps. Work, work, work for that change! Never stop! But *do* stop spitting hatred in your home and online. "They started it!" won't make up for the damage we do to our kids. Exemplify active citizenship. Let them grow up strong and confident, not angry and bitter.

The best way to teach your child respect, personal responsibility, human rights, leadership, active citizenship is to participate. So do that. There is nothing but toxicity to be found in spilling your rage online at strangers. It only serves to build anger which we don't need to be spilling over into our homes and communities.

*Disclaimer... I don't have it all figured out. I do not have all the answers. I did not post this because I am full of myself. I am just sick to death of all of the fighting and I wish we could all take a step back and evaluate how we are behaving towards each other and whether it really helps our personal causes. I am working on me. I am the only person I can work on. <3 

Give Me Back My Dad

When she is tiny,
The girl turns to her dad.
So big, so strong.
Monsters never have a chance.

When she is little,
Her personality is known.
Daddy protects her,
Watches her as she grows.

When she is bigger,
He still lifts her to the sky.
Who knew that thumb and pinky
Could cause a girl to soar so high?

She knows everything, suddenly,
When she becomes a teen.
He challenges and questions her thoughts,
Without being terribly mean.

Then comes the day
The girl transforms into a bride.
She walks to the altar vows
With daddy still right by her side.

Who gives this woman?
The question is so simply asked.
Tears in his eyes, he recalls her childhood -
A pleasure, not a task.

Life moves on
With all its ebbs and flows.
Infertility, trauma, depression.
Beauty, too. A miracle and a rose.

Her dad still laughs with her,
Still prays for her as each day is new.
Thinks of her and prays many more times
Before the day is through.

She calls him on the phone.
Daddy, how are you today?
Her cares and joys expressed
In a balance of hurts and praise.

Daddies expect girls to grow up.
This is a truth we hold.
But the girls never truly,
Expect their daddies to grow old.

When a man is his child's hero,
He becomes invincible to her.
His strength taken for granted,
The years with him, a blur.

So when the day comes that,
His strength fades suddenly before her eyes.
It throws her into denial.
It has taken her by surprise!

Dads are supposed to last forever.
It wasn't supposed to happen this way.
There are supposed to be decades left,
Before God calls him away.

My God, why my very own dad!?!
Is her heart-wrenching cry.
Why not men who are merciless?
But God is silent, doesn't answer her why.

I hate this journey we are on.
This is not the road I would ever choose.
Even in my thirties, I am too young,
This giant in my life to lose.

God, help me take every moment.
Let me show him always that I care.
Even though on a soul-deep level,
I find this all so incredibly unfair.

Give him back his days, God.
Give him back his youth.
Give him back strength and vigor.
Keep him walking in truth.

It is not okay!!
My soul cries loudly within me.
Forever is not enough,
And never really could be.

This is one of the hardest trials,
My family has ever had.
Take ALS away from us!!
Give me back my dad.

When Toil and Trouble Meeting

"Help me, Lord, when toil and trouble meeting,
E'er to take as from the Father's hand.
One by one, the days, the moments fleeting,

'Til I reach the Promised Land"

Walking through the "valley of the shadow of death" with someone you love tremendously is one of the hardest things we do in this life. As a person of faith, you work hard to believe that there could be a miracle waiting in the wings. As a human being, you are acutely aware of what the words 'fatal disease' mean. 

This song, "Day by Day" (by A.L. Skoog), speaks to the believer's heart like few others. In fact, it can minister to the soul better than a sermon on the right days. Today is one such day. These lines in particular tug at my heartstrings because it seems like so many of my prayers for my dad have flooded from my heart in paragraphs innumerable. Yet, when it comes to my lips, I have simply been reduced to, "God, help!"

I do still manage long prayers regularly. They are just disjointed and sloppy. It is like when I talk to my friends. When I am asked how we are doing, everything comes out in a jumble. My emotions, thoughts, fears, concerns, and efforts to piece these all together come bubbling out in a myriad of expressions that feels like the emotional aftermath of a trauma. The only thing is, we are not in the aftermath yet. We are in the present and the trials are at hand.

...when toil and trouble meeting...

We are in the midst of trouble. We are toiling to get through it. My dad is the one who has a terminal illness but it feels to all of us as though we are all dying. Grief is like that, I think. There is a living grief and a death grief. We are right now in the living grief.

This song reminds me to keep looking up. It reminds me that when I cannot feel strong enough to have hope or faith, I don't actually have to have those things. God has those things for me. He is the interceder. He is making prayers on my behalf when I cannot speak the words from my own lips. 

I think of my little koala. She is getting so big but is yet just a tiny person. I think of the way she longs to spend her day on my lap or in my arms. Every time her eyes meet mine, she smiles. She has that innocent trust that everything is better just because she has looked up and found me looking back. Oh, to always look at God like that! *tears*

That is how it is, you know, this valley of the shadow of death. We are constantly hanging onto one another, yes, but we are also constantly looking up. Is God still there? Yes. Does He still feel this? Yes. Does He see the pain? Yes. Is this situation truly in His hands? Yes!

The answer is a million times "YES!" because things this big cannot be taken from the hands of God. 

"One by one, the days, the moments fleeting,
'Til I reach the Promised Land."

We are walking a horrible road right now. All of the faith in the world cannot erase the fact that this is very painful. Holding onto one another helps. Looking to God and seeing that He is still looking back. The promise - that eternal promise that we will see one another again someday, no matter who goes first - helps. Time is short. Days, moments are precious. Time is a currency. Spend it where it matters.

Fears in the Night - Part 2

Today I ran across an old blog post from my previous blog that blogger will not let me back into. (Grr) It was long but I read through to the end. I do not just relate to it because it happened to me (of course). This journey with my dad suddenly declining into a disease which is fatal has brought up his immortality all over again in a much-too-real way. My thoughts on the matter have not changed. I will *always* need my daddy to pray with me in the middle of the night when I wake up afraid. 

---------------------------Fears in the Night - January 12, 2011---------------------

Fears in the night

Life is so tricky, isn't it? The way we experience rises and falls in circumstance. Tonight, in part due to a bad dream I had earlier in the week, finds me revisiting the events of last November, and where I am emotionally at this moment because of them. 

The bad dream I had was directly related to my dad's heart condition and the fact that he is most decidedly not immortal. I have never thought seriously that any of us live forever, but there is a veil of immortality that surrounds our parents, so long as we do not have to see them in weakened condition. When my dad first went into the hospital it was all about being in survival mode. Matter of fact dealing with it. However, the Monday morning he had the heart cath procedure done to determine blockage in his heart and kidneys (he has both but not high enough to require immediate surgery) that veil fell completely off of my eyes and I was truly afraid. 

It has been around six or seven weeks since then, and most of the time I do not even think about dad's heart condition, beyond the immediate concerns of taking his medication and how he is feeling/doing whenever we call. This week has been different, thanks to that bad dream. It was a short one, but it was my mom calling to tell us that dad had passed in a heart attack. She sounded better than I knew she was doing and said not to worry about dad being in pain because he was ready to go and went quickly. He had been standing one minute and simply fallen over, already in Heaven the next.

That was it. No long dream about what happens next, just that. It was enough, though, and thoroughly rattled me. I got up and called my parents, feeling a little leftover terrified from the dream and needing reassurance, but also feeling guilty. I did not want to tell them why I was calling; I especially did not want to tell my dad why I was calling. It seemed an awkward thing to open with, you know? Both of them answered, though, on speaker phone, as is their custom of late. I usually really enjoy that, b/c it is great to talk to both of them, but of course, it startled me a little bit that morning. 

I tried to sound casual and asked how they were doing, but of course being raised to be completely honest with my parents and to this day still unable (or unwilling?) to keep any part of my life from them, I did end up mentioning the dream. 

That is what has me writing this blog tonight. I was able, like so many times in the past, to call on my mom and dad for a bad dream and get reassurance. That is what brought me back to the night before his heart procedure... a night when I was unable to sleep, and when I began to cry over the events of the weekend leading up to that night because all of the times in my life when I was deeply upset in the middle of the night - upset enough to need someone to speak to me and pray with me (other than Chris) - I have always, always called my dad. That night while he lay sleeping in the hospital, prepared for anything up to and including meeting his Maker, I was awake in my bed and could not call my daddy to pray with me.

Tonight I spoke with my mom. She mentioned that dad now has a crease in his ear. I did not know what that meant, so she explained that they had checked his ears at the hospital because a crease can be a visible precursor to a heart attack or something like that. I looked it up online and learned that some recent study (after years of it being a thought but not fact) links the crease in the earlobe 'alarmingly' to the sudden death of the patients, regardless of age, obesity, or even being skinny.

I know in my rational mind that this does not mean my dad will be dropping dead tonight or tomorrow. He may not go to Heaven for weeks, months or even more likely, years. This fact does not change the realization (all over again) that as normal as life gets, as hard as I try to erase a dream, my daddy is not immortal. I cannot reconcile that and I will spend every minute after posting this blog not thinking about it, but there it is. For this moment in this day, I am grieving just a little. There will come another night in the future when I will need my dad to calm my fears and he will not be there. 

Who in your life is immortal? Who do you take for granted every day? Do you sometimes leave "I love you" unsaid, or spoken as a hurried goodbye? The Bible says that none of us are guaranteed tomorrow. So right now, right this minute or as soon after this as you are able, call that person. Call them or go to them and let them know what a valuable part of your life they are. 

If my hunch is correct, each of us will also be making that same call via prayer to our Heavenly Father. Because come the night when there is no one there to solace our hearts, He is the father who will always still be there. Fears in the night are real, whether you are a child or have the occasional one as an adult. The unchanging factor of comfort to calm those fears is Jesus Christ, our Heavenly Father.