February 6th, 2025
by Matt Parker
by Matt Parker
"These are the times that try men's souls."
Thomas Paine
Thomas Paine
Eighteen years ago I started this blog to keep people posted on Brynna's status, changing medical conditions, fun stuff she was learning, and milestones she finally hit. It's been a while since I've blogged anything, but I thought the time was right. Writing helps me digest my surroundings and make sense of the soup we find ourselves in.
In September of 2023 Brynna came down with what would be a routine stomach bug to you and me, but for her, resulted in a week-long hospital stay; she hasn't been the same since. She followed this performance with two more extended hospital stays, one in December and one in January of 2024. Since then we've noticed a steady decline in her level functioning in terms of her stamina to make it through a normal day. She has developed a tight bond with her weighted blanket and the recliner.
A few months ago we brought in a palliative care doctor to help us navigate this season of life. Palliative care is a shift from a curative focus to one of comfort. It doesn't mean her team has given up hope, but they recognize (as do we) that things aren't getting better. It's time to give her a break.
From day one we've known this time would come, but knowing and being prepared are two different things. No amount of preparation can render a parent ready to have these sorts of discussions or make these sorts of decisions. If Jesus could fret over what loomed before Him, I suppose we can, too.
Thankfully, we are not in an eminent place just yet, and who knows how many more years we have with our precious gift. Many, we hope. But our hope isn't in her longevity or in the strength of our hearts; our hope is in Him.
Hope comes from remembering a paralyzed man who lay by the pool for 38 years, wishing for a miracle. It comes in Jesus telling Lazarus to come out from the tomb, in blind eyes being opened, in deaf ears hearing a baby's cry, and withered hands once again holding a loved one.
We've come to realize hope doesn't only exist in earthly healing. It sprouts like newly watered winter rye as far as the eyes can see in the promises of a loving God. It flows from the side of the selfless Son of God, who gave everything so we might live. It abounds in the realization that there are worse things than dying, thanks to the resurrection of Jesus.
The day will likely come when we once again relinquish the temporary earthly custody given us over one of our children to their eternal Creator. On that day there'll be no need to weep for us or for her (though the thought of it gives life to a familiar lump in my throat).
For now, we will cherish each and every hug, slobber-laden kiss, painful poke in the eye, the rolling laughter that follows, every crooked smile, and pointless midnight belly laugh. For now, she continues to enrich our lives beyond measure, and for that we are eternally grateful.
These may be the times that try men's souls, but these are also the times that redeem them.
In September of 2023 Brynna came down with what would be a routine stomach bug to you and me, but for her, resulted in a week-long hospital stay; she hasn't been the same since. She followed this performance with two more extended hospital stays, one in December and one in January of 2024. Since then we've noticed a steady decline in her level functioning in terms of her stamina to make it through a normal day. She has developed a tight bond with her weighted blanket and the recliner.
A few months ago we brought in a palliative care doctor to help us navigate this season of life. Palliative care is a shift from a curative focus to one of comfort. It doesn't mean her team has given up hope, but they recognize (as do we) that things aren't getting better. It's time to give her a break.
From day one we've known this time would come, but knowing and being prepared are two different things. No amount of preparation can render a parent ready to have these sorts of discussions or make these sorts of decisions. If Jesus could fret over what loomed before Him, I suppose we can, too.
Thankfully, we are not in an eminent place just yet, and who knows how many more years we have with our precious gift. Many, we hope. But our hope isn't in her longevity or in the strength of our hearts; our hope is in Him.
Hope comes from remembering a paralyzed man who lay by the pool for 38 years, wishing for a miracle. It comes in Jesus telling Lazarus to come out from the tomb, in blind eyes being opened, in deaf ears hearing a baby's cry, and withered hands once again holding a loved one.
We've come to realize hope doesn't only exist in earthly healing. It sprouts like newly watered winter rye as far as the eyes can see in the promises of a loving God. It flows from the side of the selfless Son of God, who gave everything so we might live. It abounds in the realization that there are worse things than dying, thanks to the resurrection of Jesus.
The day will likely come when we once again relinquish the temporary earthly custody given us over one of our children to their eternal Creator. On that day there'll be no need to weep for us or for her (though the thought of it gives life to a familiar lump in my throat).
For now, we will cherish each and every hug, slobber-laden kiss, painful poke in the eye, the rolling laughter that follows, every crooked smile, and pointless midnight belly laugh. For now, she continues to enrich our lives beyond measure, and for that we are eternally grateful.
These may be the times that try men's souls, but these are also the times that redeem them.
4 Comments
As a family, we read this over breakfast, were encouraged by your faithfulness, and prayed for your comfort and continued testimony. We love you guys.
We love you all, too
Continued prayers for all of you and this precious girl. I remember when she was born and all that you have gone through over the years, the tears and the joy when she accomplished things you were told she never would. This year is the graduation for her and my Launa. We pray for comfort and guidance and for finding joy in every passing day bestowed on this earth for her. We love y’all.
What a year!