Thanks so much for the kind messages and comments in response to our last post. It’s overwhelming in a good way and even though we can’t reply to almost any of them, it is a huge comfort to know the incredible group of people near and far who are walking with us in this.
More than once this past two weeks, it’s been explained to me that “hospice is about more than just the end of life”. Seems like a re-branding campaign that cratered before even reaching the end of the runway. This isn’t all happening because Trish is under the weather. The disease is visibly very present and progressing; seemingly robbing of her something everyday. Cynicism aside, we are so grateful for skilled and compassionate guides walking us through scary and unfamiliar territory–much like those who came around us with a critically ill child.
The emphasis has been on keeping Trish comfortable and we’re so grateful that we’re able to do that here at home…but that doesn’t mean we were completely confined there. Last weekend Olivia had a lacrosse tournament and I guess it would take something more than being on hospice to keep Trish away.
Olivia’s week went from Beast to Beauty as this last Friday was the Homecoming Football game. As most probably already know from social media posts, it turned out to be a storybook night…
Hard to sum up such a week of extremes, but we’re just embracing whatever life throws at us. It seems weird to have celebration alongside such struggle but that’s also what’s making it bearable.
Hi friends. Rolf here. I’m breaking my silence on the blog to report that we initiated home hospice care for Trish this week. As she chronicled here, life was getting progressively more difficult as her body shut down. For several weeks now, she has been largely confined to bed and it was getting increasingly more difficult to breathe while sitting up even briefly. Early this week it became challenging to breathe even while reclining. While the CPAP was initially intended for respite, she now needs it constantly.
As much as we knew this was coming, it’s certainly an adjustment. Trish has long held that she wants to stay home and we want that for her as well. Hospice allows us to do that. It’s been scary. Hard to imagine how cruel it has to be for someone so super-competent to be completely dependent on others and so unable to communicate with them.
In the larger sense, hospice is simply a change in the entity that’s managing Trish’s care–which has always been dictated by her physical condition. ALS really isn’t one of those diseases that you can fight. You just have to deal with it. And this is where it’s brought us. As foreboding as the term is, hospice is just the introduction of new team members who specialize in this stage. While this week involves newness, the hospice team values continuity. The cadre of caring friends that is caring for Trish will continue to be present but there will be more guidance for a process none of us are readily familiar with. The immediate encouragement is a focus on keeping Trish comfortable and we are learning to make good use of the bag of pharmaceutical candy they’ve introduced to that end.
Can’t really promise when the next update will come but as we appreciate all those following the journey, I wanted to make sure you were aware of this new development. So grateful for your love and prayer for Trish and our family.
I’m not sure a passage of scripture has ever spoken more directly to my heart than the following Psalm from the new Passion Translation (TPT) of the Bible. If you have a minute, I want you to find a quiet space and read these verses out loud to yourself. Even though these words, I’m sure, were written solely for me today, I’m happy to share the blessing with you. 😉
42 1 I long to drink of you, O God, drinking deeply from the streams of pleasure flowing from your presence. My longings overwhelm me for more of you! 2 My soul thirsts, pants, and longs for the living God. I want to come and see the face of God. 3 Day and night my tears keep falling and my heart keeps crying for your help while my enemies mock me over and over, saying, “Where is this God of yours? Why doesn’t he help you?” 4 So I speak over my heartbroken soul, “Take courage. Remember when you used to be right out front leading the procession of praise when the great crowd of worshipers gathered to go into the presence of the Lord? You shouted with joy as the sound of passionate celebration filled the air and the joyous multitude of lovers honored the festival of the Lord!” 5 So then, my soul, why would you be depressed? Why would you sink into despair? Just keep hoping and waiting on God, your Savior. For no matter what, I will still sing with praise, for living before his face is my saving grace! 6 Here I am depressed and downcast. Yet I will still remember you as I ponder the place where your glory streams down from the mighty mountaintops, lofty and majestic—the mountains of your awesome presence. 7 My deep need calls out to the deep kindness of your love. Your waterfall of weeping sent waves of sorrow over my soul, carrying me away, cascading over me like a thundering cataract. 8 Yet all day long God’s promises of love pour over me. Through the night I sing his songs, for my prayer to God has become my life. 9 I will say to God, “You are my mountain of strength; how could you forget me? Why must I suffer this vile oppression of my enemies— these heartless tormentors who are out to kill me?” 10 Their wounding words pierce my heart over and over while they say, “Where is this God of yours?” 11 So I say to my soul, “Don’t be discouraged. Don’t be disturbed. For I know my God will break through for me.” Then I’ll have plenty of reasons to praise him all over again. Yes, living before his face is my saving grace!
Today would have been your 11th birthday. I lay here nearly motionless, unable to celebrate you today the way I would like, which seems to add to my heartbreak. I wish I could spend the day doing your favorite activities, spending time with your favorite people, and eating your favorite foods. Instead, I’m forced to navigate today…still…quiet…with only my memories of you…how valuable those memories are to me now.
Know you are in every nook and cranny of our family’s existence. The reminders of you that surround us are both subtle and not-so-subtle…
I’m thinking of you, missing you, and sending my love always, big boy.