The Big Question

Yesterday, I asked our ALS Association rep the question that has been scaring me to pieces off and on this whole time. 

"How is my dad going to die?"

I knew the semantics, mind you. I have been reading over sites about ALS and containing ALS information ever since we learned that he had an MND that was suspected to be ALS.

I know, for instance, that the nerve death happening in his body means that his functions are shutting down, one by one, because messages can no longer pass from his brain to his muscles. We see this affecting his tongue, facial muscles, limbs, etc. This changes how he swallows and speaks, how he moves. This is robbing him of the ability to walk upright. It will rob him the ability to walk at all. Nerve death is stealing his ability to get up and down. It means that he cannot catch himself when he falls. It means a lot of things.

The same nerve death that causes his brain to send signals, which are no longer being received, is happening in his lungs. He struggles to breath when it is rainy or if the humidity is even slightly up. So yes, I know *how* he will die. He will suffocate to death when his nerves can no longer tell his lungs to breathe. :'( :'( :'( 

What I was asking *Joanne is how this will fee. Will he be gasping for air? Will he be writhing or flailing around, keenly aware of taking his dying breaths? Will it be torturous and scary for him? :'( :'( :'( 

Thankfully, she understood exactly what I was asking.

I try to be very professional when I am on the phone but this question made me burst into tears. I was trying to hold them in. She, being so loving and caring, immediately took an even more compassionate tone. She explained to me that ALS patients have very peaceful deaths. When my dad is put on Hospice, they will keep very good care of him. The time will come when it is very clear that he is losing his battle. When that happens, they will make sure that he is medicated for comfort and that he is sleeping.

I know on our end it will be more complicated than that. My mother, at the very least, will still have to witness it happening. :'( :'( :'( On his part, though, my dad should slip off into eternity from a state of calm, in his slumber. This is everything that he has ever prayed for. I thank my God mightily for this!!

We don't know how long he has. Some days, it feels like he may not last the month. Other days, I can be more optimistic about everything. God is still on His throne, after all. There are things doctors cannot explain. Miracles do still happen in the everyday. 

Today I continue to pray for healing. I pray for the Holy Spirit indwelling my dad to move through him and to cause healing/regeneration in the nerves and muscles throughout his body. I pray that mercy will be granted from Heaven. I pray that we will all be spared and that the Lord will be glorified. 

That is the big thing, of course. May God get the glory. In good times or bad, in pain or in pleasure, in joy or in sorrow... may the world know that God is good. <3

We have started a GoFundMe Campaign on my dad's behalf. Please consider sharing it on social media. *Name changed for privacy

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.

Mama, I Wish You

Several recent birth traumas and injuries have caused my heart to be most heavy, most tender today. There is so much I wish for mothers in this crazy, unfair world of ours. 

Mama, I Wish You...

Mama, I see the tears trailing down your cheeks. 

I hear your sobs though I'm not nearby. 

Your heart cries out in pain without words,

and our hearts echo back in reply. 

I wish... I wish...

Mama, I wish you the arms of Jesus

wrapped tightly around your heart.
I wish His arms around your baby

while you two are far apart. 

I wish you had calm instead of terror;

 the fear of losing your precious baby boy.

I wish this nightmare you're living

could be somehow replaced with joy.

I wish that I could undo the moments

that lead to this frightening birth.

I wish yesterday had been the best of your life, 

instead of the scariest, and worst. 

Oh mama, how I wish I could express to you

the deepest sympathies of my heart. 

I wish that I could let you know that you are not alone

as you lay feeling empty, forgotten in the dark. 

Too many mamas have gone before you.

Too many of us know well this blackened road. 

You feel alone though surrounded with people

all wishing they could bear for you this load.

I wish you a healthier baby this minute, 

the next hour, day, and week. 

I wish you safe recovery to meet him in person, 

and plant mother's love kisses on his cheek. 

I wish health to his heart, mind, and body, 

and for his seizures to altogether cease.

I beg God for healing, in His Holy name

in my heart and on my knees. 

I wish you a mountain of mercies, 

new from the Lord each minute of every day.

I wish you His guidance, His goodness

every single step of the way. 

Lord, touch this mama and all others like her. 

Let your healing hand not from them roam.

Bring her and baby your healing, Oh God,

let these babies and mommies go home.