You might have sensed from our last lengthy post on August 23 that our spirits understood a little more than our minds comprehended at the time. God was preparing us, as Ben stated in that post, but my heart was so heavy I couldn’t even write the post. People around me could sense the quietness and heaviness in my spirit though we had no clue that God would work the timeline of Philip’s passing as quickly as He did. In our minds, after we made the changes, we thought the progression downward for Philip would take a month or even a couple months. In hindsight, we are so thankful that he was spared those weeks of decline.
Our family representative at the Children’s Center was ok’d to give us the contact information for the other family in Oklahoma whose children were/are affected by NCL. This was given at our Tuesday, August 21 meeting; my husband called their mother on Thursday, August 23. We already knew that in February, their daughter had passed away from NCL2 at The Children’s Center. They spoke at length that Thursday about her passing and events revolving around it, including The Children’s Center and their compassionate care during the passing of their child. Little did Ben know that in less than 24 hours we would be experiencing that same level of care in the passing of Philip. Oh, the grace of the Lord!
Since most of the adjustments we had made for Philip’s care had started Thursday morning, I went over to TCC that evening to see how Philip was doing. I thought our friend, Lisa, was going to TCC on Thursday afternoon, but instead she arrived just a few minutes after I did. From that time on, with her nursing experience, she guided us and answered a lot of questions through the last hours of Philip’s life. Through her medical knowledge and understanding, we quickly realized that things were changing faster than we had thought. God certainly knew when all these decisions needed to be made to allow Philip to go home to heaven without a long, drawn out time frame. Oh, the grace of the Lord!
Through previous blog posts you can read some of the timed updates as they happened, but by Friday morning, Philip’s little body was beginning to shut down. Ben and I were both with Philip from about 2 am Friday morning through the rest of the day. Later Friday morning, the staff at TCC offered for us to move Philip to a large, private room on the other side of the floor. This turned out to be such a blessing because, from that time on, friends and family were almost constantly with us. That large room made such a difference in all of us being together during that time. Throughout the day on Friday, we began to remind Philip about all the things that weren’t in heaven—suctioning, feeding tubes, seizures, AFOs, haircuts, baths. Our minds were turning to freedom for Philip.
There were times through all of these events that Ben and I were able to be alone with Philip. I had held him for the last time back in the spring, knowing that it agitated him so much. But I laid beside him on Friday and grieved the loss of our firstborn. That was a precious time. Thankfully, he was comfortable through it all. By Friday evening, we were just waiting for the Lord to allow him to go. There was nothing else we were doing to prolong his life here. Many waited with us until 10 pm when most decided to go home. Ben even decided it was best for him to go be with Ethan and Joy at home and get some rest himself until I would call letting him know that some indicators of end-of-life changes were beginning to take place. He wanted me to stay, and we asked my sister, Angie, to stay with me. I slept for a couple of hours until midnight while Angie sat with Philip. Not much changed in those hours. Then Angie got some sleep until 2 am or so. I remember thinking through those two hours how peacefully Philip was sleeping. It seemed like a true, natural, Philip sleep. He was breathing at a perfect rate, and even his ragged breathing had quieted so much. He was so calm. I marveled at how he was sleeping so peacefully, even though his body was shutting down. Oh, the grace of the Lord!!
When the nurse came to administer some medicines at 2:30, she noticed he had a blowout diaper. That had been Philip’s normal for years, but I felt so bad that we had to clean him up at that time when he was sleeping so peacefully. While the nurse and I were cleaning him up, I began to know something was different. We decided to reposition him, because he had been on his left side all day but when we went to turn him, his shirt was soaked from laying on it, so we needed to change it. Everything about that moment in time was letting me know that Philip’s last minutes were close. I had never been around anyone during the few minutes prior to death, but with Philip I just knew. Oh, the grace of the Lord!!
After we had repositioned Philip, and gotten him comfortable again, he began a different breathing pattern--what I now know as ‘agonal’ breathing. He was not moving much air in those gasping breaths, but those breaths are the only things I can look back on as uncomfortable for me at the time. The nurse noted the change and went to call the doctor. I called Ben, and Angie stepped out of the room for a minute. When I looked down, I noticed there was a long pause between breaths. I stepped out to the doorway to let the departing nurse know that he wasn’t breathing. When I turned around, I could clearly see Philip’s face as I approached the bed. He took a couple more breaths that were spaced out, then I saw his eyes open briefly (though they had been closed all day), and as he closed his eyes, he took one more breath. I knew then that he was gone and I stood by his bed, taking it all in. I was alone (humanly speaking) with Philip when he took his last breath but it was a beautiful, peaceful thing—one of the precious things I will always treasure. My sister returned to the room within seconds of that last breath and I said, “He’s gone.” She looked at her watch and it said 3:00 am. The nurse returned seconds after Angie stepped back in the room and listened to Philip and immediately went to go call the doctor. I assured her that I understood that she couldn’t say anything, but also that I knew he was gone. It was then that I looked at my sister through my tears and said, “He’s free, Angie!” as full realization dawned. She said through her tears, “I just wonder what he is doing RIGHT NOW!” Ben did not make it in time and I was worried about that but when he arrived just minutes later he assured me that it was okay. We stood in the room by ourselves for several minutes and wept. But I believe they were halfway tears of joy for our sweet boy. No more pain, no more seizures, no more medicine, no more suffering. Just free, and whole, and perfect, and the best part—with Jesus! Oh, the gift of the Lord!!!!
The doctor arrived and Philip was officially pronounced dead at 3:44 am. Then, we waited until the funeral home personnel arrived. My brother-in-law arrived and the four of us sat there and talked about Philip—some sweet memories and about how everything had happened as we knew God had intended. TCC staff offered for us to come back later in the day to gather the things in the room but Ben decided we could just do it then as we waited. It took little effort to gather all the things and put them onto a cart. After they took him away, we made our way home. I was sooooo tired and slept for several hours.
These are the things I realized after I woke up on Saturday morning. First and most important to me, the Lord reminded me that my greatest fear for the last 3 years was that I would be alone with Philip when he passed. I was "alone" with him and it was beautiful, God thus showing me that His grace is greater than my greatest fears. He was teaching me through the very moment of Philip’s death. How personal! Second, I was thankful for my husband’s direction in those early morning hours. It would have been very hard to go back to that room to gather up the things and have final memories different than the ones we had established by God’s grace at Philip’s peaceful passing. Third, The Children’s Center gave us a wonderful gift to help us with the grief associated with Philip’s death. Because they had cared for him for 9 months, we could return home that day and our routine at home did not have to change—no room full of Philip’s things and the bed where he had lain hours earlier, no major shift in timing and routine care. They allowed us to grieve those things in December when Philip moved to TCC and thus made the sorrow at his passing easier. I am thankful for all of those things. We’re also thankful for the family and friends who loved him almost as much as we did and walked those last hours with us, whether they were actually present or not. What a shared burden! We’re thankful for more prayers than we will ever know lifted to God for us. We will also never know the difference they have made in how we function every day, especially these last two weeks.
Our church family immediately began to care for and comfort us. From that Saturday to now, we have received food most every day, many days enough to feed our extended family of almost 60 while they were here. What a blessing! The love, encouragement, prayers, and hugs have strengthened and supported us in a way that we could never have imagined.
There are even more little details that we can see as we look back. This leaves us with little doubt that God was in control through every step—as we knew He would be. Oh, the grace of the Lord!!!!!!!!
I love this song! Let me leave you with it today.
All Along
Lyrics for All Along by Jennifer LaMountain
Time just drifts away
And I look back on the years
With memories of happiness and bitter tears
Through it all there is a common thread
Which cannot be ignored
You were there making me to be Your servant, Lord
Chorus
All along Your hand has been guiding me
Shaping my life to be a beautiful song
All along You've led me through
Things that You knew would make me strong
Your love has been there all along
Every joy and pain Had a reason of its own
Now I realize that I was not alone
The changing seasons of my life
Were not left up to chance
Lord, I know You were working to fulfill your plan
Tomorrow when I turn around
And look back at today
I will understand Your purpose
And my thankful heart will say
All along Your hand has been guiding me
Shaping my life to be a beautiful song
All along You've led me through
Things that You knew would make me strong
Your love has been there all along.