A rough night, and a tribute to our favorite doctor

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 Post from June 12, written by me:

Samantha had a really rough night last night – she seemed to be in pain off and on and had trouble settling down after feedings. We are allowed to give her one to two mg of morphine every 4 hours, and I was giving her one. This morning I started giving her two every 4 hours, and it seems to have made a real difference in her comfort level. On the downside, she hasn’t had a bowel movement since the nurse stimulated her on Friday when she was here. Since she’s on the maximum stool softener allowed, there isn’t much else we can do for her. We’re trying to hold her semi-upright as much as possible, which is a delicate balancing act between keeping her comfortable so that her bowels aren’t pushing up and she can’t urp up her stomach contents (which is all from laying flat) and not having her so vertical that the weight of her head hurts her. So she spends a lot of time laying on our chests as we recline partway.

She came to church this morning and got to see a whole bunch of people, some of whom got to hold her. I wish I had taken pictures, but I forget to pull my phone out for those photo ops. After church we went to our community clubhouse for brunch, and then everyone scattered. Samantha and I came home, Allison and my mom took my nieces to a birthday party (after they had gone swimming during brunch at a member’s house), and Travis and my dad went to pick up Mark at the hospital. That’s right, Mark is home! His surgery went well and he is now in the recovery phase. We are going to take Samantha down to see him later.

It seems like more should have happened today, but really at least for Samantha and I it was a day of rest – resting in worship with our church family, resting at home, resting in the knowledge that God is holding onto us. I have to say, the songs in church this morning carried a lot more meaning because of our situation than they normally would. And celebrating Pentecost with the Word being read in five different languages was wonderful – especially since I had never heard two of them before!

My husband reminded me of another health care professional that I need to mention here and thank – Dr. Pacheco. If Samantha hadn’t gotten worse with her brain damage, Dr. Pacheco was going to be her primary care physician. She is an immunologist who is part of a clinic for children with special medical needs. The clinic is 24 hour and is studying the affects of having access to round-the-clock care, if it cuts down on hospital stays when kids don’t have to go to the emergency room, etc. Anyway, Dr. Pacheco was a blessing to us in so many ways while Sammy was in the hospital. She stopped by daily to check on us, sometimes for medical needs, sometimes for what she called “social visits.” She’s called and emailed since we came home, too. One of those side disappointments (as in, smaller than the big one of losing our little girl) in this situation is that we won’t get the opportunity to see her on a regular basis. She is a beautiful soul with a sharp sense of humor and a caring that extends to staying long hours at the hospital out of love for her patients. One day when we had some concerns about Sammy’s symptoms that weren’t being addressed by others, we ran into her at lunch and mentioned them to her. She got on her phone immediately and ordered tests and followed up. We probably missed her more than anyone when we were at HealthBridge. In addition, this past week when Mark was in the hospital, she visited him! How many doctors will reach out to an entire family like that? She is a blessing.

CaringBridge post from later on June 12, written by Travis:

Samantha is having another very rough night. We notice more strain in breathing and she seems to be more uncomfortable with each passing day. As I, Travis, sat and held her tonight while we fed her through her NG tube, gave her meds, and then tried to cuddle and calm her, I realized something so powerful, “How sweet the Name of Jesus sounds in a believer’s ear! It soothes all sorrow, heals all wounds, and drives away all fear.” How true, the words of this hymn!

Earlier tonight Steph and I were walking down to see Aunt Allison and Uncle Mark (about a block away) to welcome Mark home and we passed our new neighbors. They said hello and asked what we were holding and how old she was. We answered and kept walking….

Often throughout the days people will say, “You are so strong.” “Wish I had your faith.” “How are y’all doing this?” At times it is easy to let myself feel guilty, or to feel numb, or to feel bad that I do have some sense of peace. But tonight, tonight as I lay holding Sammy, calming her, telling her its ok, ok to go on to heaven. Its ok to go see Jesus! Say hi to your brother Jonah for mommy and daddy, I suddenly realized the power and greatness of God making His grace sufficient for us! Giving us His strength in our weakness!

Through out our almost 10 years of marriage, the sicknesses, surgeries, pains, losses, and now this… the power of Jesus’ name has become, well, has become our foundation and our very rock! The answer to all these questions, the ability to lovingly walk with our baby and enjoy and celebrate every moment we have with her is simply Jesus. It is all about faith like a child. As Sammy looks to us for love, comfort, meds, foods, and all that she needs, so to do we look to Jesus. To His cross, and His empty tomb. And then together, as a family, we celebrate, even in the midst of pain and the sorrows of this world: life, joy, victory!

Call it simplistic, but it is Jesus! How sweet that name. How precious indeed. When I look at Sammy I know she has been marked with the redeeming cross of Jesus in her baptism and He lives in her. When I gaze into the eyes of my wife with tears, I see the love of Jesus alive in her! When I feel I cannot move another step, preach another sermon, answer one more question, Oh! How! Sweet! the name of Jesus sounds!

You see, the greatest thank you in all of this, the highest praise, the name that needs mentioned the most is Jesus. For without Him, I am nothing. A worm of a man…. But with Him, we are heirs to the eternal kingdom of our Father in Heaven….so is Sammy, Steph, Jonah….. “Oh how sweet the name of Jesus sounds!”

I love you Steph and I love you my Sammy! I thank our Jesus for you!

Fernando Ortega, “Give Me Jesus”

In the morning, when I rise

In the morning, when I rise, give me Jesus

Give me Jesus,

You can have all this world,

But give me Jesus

When I am alone

When I am alone, give me Jesus

Give me Jesus,

You can have all this world,

But give me Jesus