Tag Archives: Gideon

Christmas 2022

It’s hard to believe this is our 9th Christmas with Gideon. After his diagnosis, I never thought we’d get one Christmas with him; but here we are celebrating the birth of Christ for the ninth time with our little man!

I’m not gonna lie. This Christmas was rough. Kevin and I were up till 1:30 am getting all the things ready. Like usual, we waited until the last minute to assemble ride toys & electronics. But it’s never been that big of a deal…. until this year. Unfortunately for Kevin, Nya’s ride toy might as well have come from IKEA. Kevin spent hours building that thing from the ground up. Meanwhile, the new electronics proved my age and left me feeling uneducated.

Why do we do this to ourselves?

We laughed while saying all these things should come with a disclaimer on the box that says, “Estimated assembly time- several hours.. Do not attempt on Christmas Eve!”

We were asleep for just over an hour when Gideon woke up with a dirty diaper. Did he go back to sleep? Nope. Not until 6:30 am. The word exhausted doesn’t even begin to describe us at this point.

Of course our other children were up around 8 am. Praise God for Laynie! She made the littles Christmas pancakes (red and green with whipped cream and sprinkles), giving us an additional hour of sleep. God knew we needed her first in the birth order! Could you imagine if Josiah was our oldest!? Lol.

Christmas 2022 was the first Christmas we opened presents without Gideon present. He slept till noon and we felt bad making the other kids wait for him. Plus, he still doesn’t grasp the concept of opening a gift. He hates the feeling of paper and would much rather just be held. So it worked out.

Nevertheless, guilt (and fear) hit me hard as I watched my babies open their gifts while Gideon slept in. It was a visual reminder of what Christmas will look like one day, when Gideon is gone. It’s not a thought that enters my mind as much anymore because Gideon continues to defy the odds. But every now and then, especially when deprived of sleep, my mind goes there and I have to remind myself of the promises of our God.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light & momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen but what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18

“You keep him in perfect peace whose mind is stayed on you because he trusts you.” Isaiah 26:3

“For this world is not our permanent home; we are looking forward to a home yet to come.” Hebrews 13:14

The truth is that none of us are promised tomorrow. Even though I may think Gideon’s life is shorter than most, any one of my children could be called home first. It’s why we love big every day. It’s why we seek reconciliation and forgiveness quickly. It’s why we make the most of Jesus as well as every single moment we have, whether it’s a holiday or not.

Jesus is the reason for the hope that we have.

Lord, teach us to number our days that we may gain a heart of wisdom. -Psalm 90:12

Happy 7th Birthday Gideon

These photos were taken almost exactly 7 years apart. It’s almost like he’s got a secret that he’s holding onto. Maybe he’s been laughing all along because he knows something we don’t.

Happy 7th birthday Gideon!!

You were 7 months old when the doctors told us you had less than a year to live. Then once you made it to a year, they gave you a 77% chance of living until to school age.

Somewhere along the way we realized that you will write your own story and we will love you and celebrate you every day until Jesus calls you home.

So happy 7th birthday Gideon. You’ve done more to impact others in your first 7 years of life than I could ever hope to do if given 77. ♥️

Looking forward to celebrating you today and then again in a few more days at Great Wolf Lodge!

Gideon had a good day

Yesterday, Gideon had a good day.

His intake increased and he even fed himself a Pediasure bottle! He also pooped four times yesterday! TMI? I don’t care. Also he was awake more yesterday than he’s been in a long time. It is a beautiful thing to see those bright blue eyes shine.

We will see the hospice nurse sometime today and I can’t wait to tell her how much better he’s doing. Nurse Kathy is the best. She’s the one who introduced us to my new favorite word for a diaper blowout. Are you ready for this?

Poonami

(poo+tsunami =poonami)

You’re welcome.

Anyways, as I was looking over my calendar this week, it hit me. We still have a lot going on as a family. Life doesn’t just stop because someone we love is on hospice. Laynie will still go to her sewing class and volleyball. She and Josiah will still do school work. Josiah still needs to work on his potty training (Jesus help me!). Nya will still go to her 15 month check up. And Gideon still has all his needs plus a few extras now.

My point in rambling our schedule, is this: We are going to keep doing life, and we’re going to do hospice too. Life is not going to look the same as it did before; but we’re going to do it like we always have. We’re going to love each other fiercely, we’re going to make time & allowances for big emotions, and we are going to walk this out (for better or for worse) in a way that glorifies our merciful Creator.

God has been extremely gracious, faithful and sustaining to us over the years. That won’t change for us. Even if the healing (this side of Heaven) doesn’t come.

“…shall we accept only good from God, but never adversity?..” Job 2:10