This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.
CaringBridge from June 19, written by Travis:
“Praise God from whom all blessings flow. Praise Him all creatures here below. Praise Him above you heavenly hosts. Praise Father, Son, and Holy Ghost!” Amen. Alleluia!
As I led worship on this Holy Trinity Sunday and the “high festival” of Father’s Day we sang this wonderful song of the church. As I heard my Faith family singing with and from their hearts, I pictured the glorious vision of heaven and all of God’s children in Jesus singing praises, gathered around the throne of God, all in pure joy, peace, and perfect health! I must admit, at that moment I was filled with tears of sadness but floods of peace. Sadness in knowing that soon our Samantha will be leaving us here to go and be with Jesus. Sad, because we will miss her. But peace, and even overwhelming joy, in knowing that she will be perfectly healed, around the feet of Jesus and one day soon, as life in this world is short in the grand scheme of things, we will see her soon and join her in that wonderful, awesome eternal home of heaven.
Sammy gave me the best Father’s day ever. Being able to hold and love on her this day, getting that adorable card to “daddy on his first Father’s day” indeed from start to finish it was a blessed day. Even more blessed as I got to celebrate it with my wonderful wife, family and church!
Sammy had another rough night last night. Her breathing is becoming more labored as her secretions become harder to manage. Her head continues to swell and become softer. She is sleeping more and more and when she is awake it is harder to calm her down. All this we have been told by hospice is more and more part of the process of her journey towards heaven. Thank God for the gift of hospice and medicines. Last night and today we have been able to give her Ativan as needed to help calm her and relax her. As she becomes more lethargic and weak, her cries have become more like little squawks and squeaks, and we see those beautiful blue eyes less and less. Today was much of the same also as she still struggles with breathing and pain.
As we take peace and comfort in God’s Word, and Gospel, as the songs of praise and worship, old and new, echo in our hearts and minds, we become more fervent and strong in our prayer, “Come, Lord Jesus and rescue our Samantha!” For as much as we praise God and enjoy each and every day, moment, and second with her; as much as we know when her eyes close here in this world and open to see Jesus and Jonah, and heaven; we know that day will be bittersweet. There will be tears and joy. Sadness and laughter. Mourning and peace…all in the ultimate, triumphant cry of Easter that never ends: Christ is risen. He is risen indeed. Alleluia! Amen. God bless y’all and our love to each and every one of you.
Happy Father’s day to all you dads out there. What a precious gift God has blessed us with in our children and family. Praise Him forever and glory to His name!
CaringBridge from June 20, written by me:
Samantha had an ok night last night, although she makes some noise when she sleeps so it’s harder for us to sleep. This morning she was especially having a hard time, but we think it was partly because she pooped – this time it was all on her own, without anyone stimulating her. Of course it may also be due to the ativan she’s had a couple of doses of in the last few days. We’ve noticed that it really seems to relax everything in her body. She sleeps more and more, and when she is awake she often seems to be pretty uncomfortable. So we are thankful for when she has peaceful sleep.
Today Sammy’s nurse came back – her regular nurse got sick last week, so we haven’t seen Heather since last Monday. She gave Samantha a bath and changed her ng tube. Thankfully it all went without a hitch this time (since the last time the tube got changed, she aspirated). Her head has grown again. Each time the nurses come, they measure her head. It always grows a little. Now the circumference of her head is bigger than her 13-month old cousin. Her breathing is also slower these days, which we time occasionally.
Papa also returned today from Nebraska (my dad). We’re all just trying to spend as much time with Samantha as possible. So he has gotten “dibs” on holding her since he got back. Travis and I are doing our best to get through each day and night, but we’re getting tired. I think we came home living on adrenaline, assuming she wouldn’t be with us much longer. We just wanted to do everything possible for her and spend every second with her. Now that we’re heading into our fourth week of having her home, we’re getting pretty tired. I’ve managed to turn off my alarm in the middle of the night a few times and fallen back to sleep, missing her medicine times. So we’ve put my cell phone on his side of the bed. By the time I walk around the bed to turn it off, he is also awake (he sleeps more soundly than I do). We also try to sleep in when possible, although lately that’s been harder due to varying circumstances. We may have to do another couple of nights where we trade off giving each other a night off just to catch up on some sleep.
I will try to upload a couple of pictures of her with her “pigtails” that the nurse put into her hair after her bath today – so precious! Our little princess is such a gift. We thank God for every moment we get to spend with her.
CaringBridge from June 21, written by Travis:
Samantha’s days seem to be getting a little tougher for her. Her secretions are really increasing and causing her great trouble in breathing. She had a rough morning, an ok afternoon, and a rough evening, mostly with breathing. Sammy also had some minor seizure activity and also threw up at one point. Her pain seems to be increasing with cries as her head gets softer and softer, larger and larger. The nurses have told as that one of two things will progress at this point:
1) Her secretions will increase and, she will develop pneumonia, and begin to suffocate. That is scary! Thank God we have meds like Ativan that can help calm her down and stop the panic she has when she cannot get her breath. It is so hard to see this.
2) As the pressure and fluid increases in her head, as the soft spots grow, the brain stem will compress and she will peacefully fall asleep and not wake up.
It sounds harsh, but our prayer is that a peaceful sleep from this world will lead to a joyful eye opening in Heaven for Sammy- soon. Seeing her struggle and hurt is the hardest thing….knowing that the gift of Heaven and perfect healing in Jesus’ arms is already hers through the gift of Faith and God’s Baptismal waters truly bring us great hope and comfort. Our prayer is a strong cry to God that she will peacefully, joyfully fall asleep and wake up in Heaven!
Psalm 23 brings to me a lot of comfort. I’ve often preached about it and taught about it, but have been thinking a lot about it these last days. The Psalm brings us great comfort. Even when we walk through the dark valleys of life, Jesus is with us. He is holding our hand, giving us His peace, and even carrying us through when Steph and I just cannot take another step. He is good! Psalm 23 tells us that even in the valley of the shadow of death which to our human mind seems like an ultimate end, He, Jesus, is with us. Leading us! Holding us. Loving us! And because of the victory He gives us through His death and resurrection, through the gift of life that we have in the grace of our God, in the promise of our God’s Living, Divine, Word Jesus, the valley of the shadow of death is a gate to eternal life and victory! It not to be feared as we can face it with confidence in and through Christ. Even as our little Sammy fast approaches that valley, Jesus is with her! He is with us all!
Praise be to God for each and every moment we have with our little, precious, girl! Glory be to Jesus for the victory He gives us over sin, death, and the devil. May the Lord hear our prayer and have mercy on Sammy and bring her home soon to perfection! Amen. Alleluia! Amen.!
Next post coming tomorrow.