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.

Looks like I actually got ahead of the calendar, so we are back to one post per day. I will still be combining posts from a few days, especially since towards the end of Samantha’s life, the posts got shorter. We spent more time focusing on being present with her. In addition, as she slipped away, there was less and less to share with friends and family. We are headed into the final weeks now.

CaringBridge from June 13, written by Travis:

Amen…come Lord Jesus!  The nurse came to visit Sammy today.  Her system is gradually shutting down.  Her breathing continues to be strained, she remains very sleepy and lethargic, and she remains very weak.  One way in which Steph and I see this is in her diaper changes.  She no longer has the strength to fuss and cry.  We are also seeing her tone tighten and she is beginning to keep her back arched more each day. As her pain meds continue to increase, as secretions worsen, and as she just is more and more uncomfortable, this great prayer from Revelation becomes more and more powerful!

Now, don’t get us wrong.  Stephanie, our family, and I love each and every moment we have with our little, precious Sammy.  We cherish every time she opens her big blue eyes, which is becoming less and less.  We love to smell that baby smell and play with those little tiny toes and fingers!  But as much as we love her, we know that Jesus loves her even more.  More than any of us put together.  We also know that as each day passes and Sammy’s health continues to decline, that the most powerful miracle, the greatest healing, the most awesome gift would be the victory of eternal life with Jesus in Heaven!

For us in our human wisdom, its hard to think about, to accept it, and sometimes it bring thoughts and feelings of guilt…like we really want our daughter to die?  And then we come back to those Words of Jesus, spoken in so many powerful ways in His Word, that He is life….eternal life.  That He is even now preparing a mansion for each of us in Heaven so that we can be where He is.  As we stop to ponder on, reflect upon, and pray over His Words, these promises, we know that truly the desire for healing, life, and Heaven for Sammy is truly the best gift, reward, and healing she can ever, ever have!

So we come back to the great prayer St. John shares with us in Revelation:  Come, Lord Jesus.  Come quickly and ransom your people!  Take us to be with you forever!  Bring us your healing, your hope, and your life!  Grant to us healing, victory, and eternal peace and praise!  Come, Lord Jesus!  Amen. Alleluia!

CaringBridge from June 14, written by me:

She pooped! We are celebrating this small victory. Oh, my, it is funny how much we worry about these things. My sister, who has four kids, worked her magic and got her to poop. We were watching America’s Got Talent tonight and joking that Allison should go on next year with her amazing talent of making babies poop – we have to find the little things to laugh and smile about!

Meanwhile, up until that Sammy was having a rough day. Last night she didn’t want to lay in her crib, so Travis got up with her for a few hours to lay with her on his chest on the couch. This afternoon she had a seizure that was about 2 1/2 minutes in length – we have to time them because if they last more than 4 minutes we have to give her medication and call the nurse. She also threw up earlier, so the on-call nurse arranged for another nausea medication. But she seems to be resting so much more comfortably since she filled her diaper this evening. The nurse who stopped by this weekend did tell us that her bowels were probably pressing up on her diaphragm which would restrict her breathing. We hope she will sleep better tonight.

If she doesn’t, we will be calling on some of you who volunteered to help us at night, just to be willing to hold her. She prefers to be held, and who can blame her? I know that if I were in her position, I would feel safer knowing that someone is there. Babies know that by being held close.

I want to make sure I highlight one more group of medical professionals here: Dr. Chang and all the folks at Turtle Creek Medical here in town. Samantha went there for her pediatric care before she got sick. Dr. Chang was always so sweet with her, gently checking her out and answering all of our questions. He saw her twice when she first got sick and recommended that we take her to the ER in the hospital where she was born rather than the local hospital, because they don’t have a NICU here in town. I am sure that as much as we were shocked by her rapid decline that first day in the hospital, he was more. She seemed like she was gassy or colicky and her bloodwork was fine. What is so awful about her disease (and perhaps a blessing because we can’t second-guess ourselves or our early choices) is that it wouldn’t have made a difference if they had caught it earlier. They caught it early and started the antibiotics, but the disease progression is what destroyed her brain.

Thank you all again for walking this journey with us. The nurse comes tomorrow and we hope to celebrate Aunt Allison’s birthday with her as well.

CaringBridge from June 15, written by Travis:

Sammy had a visit from the nurse today. She continues to decline in health. Her respiration is down, well below normal she is now at 10 resp./min. She continues to eat less and is having increased seizure activity. She had a very sleepy day today hardly opening her eyes much at all. We sure missed seeing those beautiful blue eyes today! She is also becoming increasingly lethargic each day.

She is a little fighter. We pray our Lord to send His angels to be with her and to lead her home soon to perfect health and life. We joke all the time where she gets her fight and stubbornness from (as her mom and I are both type A, first borns…!)

In all this we take shelter and peace in the Words of Nahum 1:7, “The Lord is good. A refuge in times of trouble. He cares for those who trust in Him.” Back while I was in the seminary, right after Steph and I were married, I had several surgeries. The dean of students visited and often shared this passage with us. If you go to Nahum and read it in context, it is a lot like life! In Nahum there is trouble, battles, trials, and turmoil. But in this passage, v.7, we see the clear Gospel, mercy, and grace of our God! We know that he is walking with us, holding us, and providing for us a shelter in His love and care each and every moment of each and every day! Even when we don’t “feel” it, even when we don’t want to talk to Him, He is there, with us, holding us and caring for us. Why? Because He is always faithful and His love is never ending! He pours all this out on us in His Son Jesus as He lavishes His unconditional love and grace on us each day!

Another way in which God blesses us is and provides for us peace and refuge in the love and care and prayers you share with us. It means so much to know that you are sharing in the life and story of Sammy as we praise God for her life. Your prayers, concerns, and comments share with us the love of Jesus as He uses us in so many ways. Thank you! Thank you all so much! Join us in praising our God for “He is good. A refuge in times of trouble. He cares for those who trust in Him!”

From our hearts and our family to yours with love, peace, and joy…. May God bless you and be with you!

Next post coming tomorrow.