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.

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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. 

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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. 

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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.

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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.