In honor of Mother’s Day, which always triggers memories of his last four days of life, this post is a reprint of the message I shared at the Celebration of Life for Timothy José Barnes….my son…a world changer.

In October 2008, as I sat rocking my newborn baby daughter who had been born with Down syndrome and a congenital heart defect, God first put it in my heart to adopt another baby with similar issues. Over time that leading became a call for our entire family.

From the moment we were contacted about “baby José,” I wanted nothing more than to bring him home and fill his life with love and opportunity. I remember sitting at the desk in my office looking out the window into our backyard. I could just see this sweet little boy running around chasing chickens and playing with his siblings. Sure, there would be hurdles to overcome—a heart surgery his first spring and certainly some developmental challenges, but nothing we couldn’t handle. We knew that he and the other kids would enrich each other’s lives so much and that he and Lydia could grow up together and be lifelong companions. That was our dream, and I believed it to be our call.

But as the days and weeks and months unfolded, nothing went according to plan. Surgeries, ventilators, trachs, and g-tubes came into the picture. I resisted all of them with a vengeance until it was obvious they were the only option. Still I was sure that the turning point was just around the corner. Each week I told the kids, if we can just make it through this week, he’ll come home, and everything will be better. Those weeks turned into months, and yet I clung to the call I believed God had placed on us, and I fought with all of my being to get Timothy home. I was certain that a home and a family were the things he needed most of all.

When Timothy finally did come home in May of last year, we quickly realized that he was a much more fragile baby than we thought. He almost lost his life on the floor of our family room. I had never before seen death hover over anyone, and it scared me. For the first time, I realized that what Timothy needed most could not be found in our home…that he had a lot more healing to do. This wrecked me for a while. I questioned God, asking why he would place this precious boy into a family who could not give him what he needed most—24-hour one-on-one medical care. It seemed like a mismatch—Timothy and his siblings were supposed to enrich each other’s lives, yet they couldn’t even live in the same home. It just didn’t make sense. At one point, I even told God that I was willing to let Timothy go if he had a better family for him…one that could give him the medical care he needed at home or could stay in the hospital with him all day every day. But God said, “No, he is yours, and you are his. Trust me.”

I finally accepted that, as much as I wanted otherwise, Timothy was not ready to be in our home… YET. This realization brought a new level of trust, calmness, and peace. I let go of my need to control every aspect of his care, and God filled the gap with countless medical providers and friends who cared for Timothy as if he was their very own. We were able to settle into a “new normal,” and we did our best to balance the needs of all of our children. We knew that Timothy was getting what he needed to come home to stay, and we tried to let go of the guilt of all that we were not able to give him. We trusted God’s perfect timing and walked patiently behind Him one week at a time.

Timothy began to make slow but steady progress. He grew. His lungs began to heal. He became more stable and so interactive. He loved to play wildly with his toys and amazed everyone with his impressive yoga poses. He blew kisses, made raspberries, and gave away big, toothy grins. My best memories of Thanksgiving and Christmas last year were the times we spent with him in the TCU altogether as a family. When I visited him in the evenings and on the weekends, we would sing songs together or cuddle or read stories. I would always rearrange his toys before I left and turn on his music. Somehow that made it easier to leave, thinking I had left behind surprises for him. This spring he finally came off the ventilator and was doing so well that his doctors agreed to attempt to wean his trach before sending him home. They began that process and things looked SO promising.

The call we received at 6:24 a.m. on Tuesday, May 14, came out of nowhere. He had been just fine the day before, just a little fever, which was commonplace for him. I had visited him the night before, and I knew he was coming down with something because he fell asleep almost as soon as I picked him up. I just enjoyed the time holding him because he is usually such a wiggle worm. In hindsight, I should have known something was more wrong than usual because when I put him under his play gym that he loved so much, he did not reach up and pull his monkey toy that plays music. He ALWAYS pulls the monkey toy. I should have known then, but I didn’t. Exactly 36 hours later, our sweet Timothy was gone. We were left reeling with questions of how and why this could have happened. He was so close to coming home and living out the dreams we had for him. How could this be?

I confess that my first thoughts were wrong thoughts…I wondered if God was punishing me for all of the ways I had sinned over the past year and a half. Stress brings out the best and worst in us, and I was heavy in the worst department, especially with my own dear husband. But we serve a forgiving and loving God, and “there is now no condemnation for those who are in Christ Jesus,” so I knew there had to be some other purpose.

Several days later God brought to mind a passage of scripture that I knew contained the answer. It is from Luke, Chapter 2, Verses 41-51:

‘Now his parents went to Jerusalem every year at the Feast of the Passover. And when he was twelve years old, they went up according to custom. And when the feast was ended, as they were returning, the boy Jesus stayed behind in Jerusalem. His parents did not know it, but supposing him to be in the group they went a day’s journey, but then they began to search for him among their relatives and acquaintances, and when they did not find him, they returned to Jerusalem, searching for him. After three days they found him in the temple, sitting among the teachers, listening to them and asking them questions. And all who heard him were amazed at his understanding and his answers. And when his parents saw him, they were astonished. And his mother said to him, ‘Son, why have you treated us so? Behold, your father and I have been searching for you in great distress.’ And he said to them, ‘Why were you looking for me? Did you not know that I must be about my Father’s business?’ And they did not understand the saying that he spoke to them. And he went down with them and came to Nazareth and was submissive to them. And his mother treasured up all these things in her heart.’

The dream we had for Timothy to come home and run in our yard and play with our kids and grow up to be Lydia’s life companion was a good dream, but it was too small for this little boy. He was a world changer, and to be a world changer, he needed to be out in the world rather than confined to a 3-acre lot in Chesapeake.

‘Son, why have you treated us so? Your father and I have tried everything in our power to bring you home, to love and raise you with your brother and your sisters and to give you the life your birth parents wanted you to have.’ And he said to them, ‘Why did you want me to come home? Did you not know that I must be about my Father’s business? There were doctors and nurses and therapists and janitors and old friends and new friends and complete strangers who I would have never met in the confines of our home. But my Father set me apart to touch their lives and hearts. He loved and spoke to others through me, and they are better for knowing me.’

And his mother treasured up all these things in her heart and realized that she was one of those people that Timothy’s heavenly Father loved and spoke to through him. And that yes, the road had been hard,and she had made plenty of mistakes along the way. And no, her dreams for him did not come true. But she wouldn’t change anything…even the hard parts. And he taught her many things that amazed her.

From his birth parents, she learned that sometimes the most loving thing you can do for someone is to let them go.

She learned that God can use the broken—even the very broken like herself—to do His work.

She discovered that we are called to do hard things, things we never wanted or expected to do— and that the harder the thing we are called to do, the more God meets us in the midst of it.

She learned that the least of these are indeed the greatest. And that those who care for the least of these—especially the medical community—are serving the Lord Himself.

And perhaps the most powerful lesson of all, she learned at the very end of his life as she reflected back on it in its entirety…She learned that no matter how many wounds we suffer, we still have the capacity for love and joy—we just have to choose to walk in them.

And then God told her that He had released ‘our brother Timothy’ from his call…that his work was done and it was time for him to run and play and dance and sing just as she always wanted him to do…only not in her physical home but in her eternal home.

“And his mother treasured up all these things in her heart”…and she knew that she would never be the same.  

Related post: Nothing Can Separate Us

The first time I met Frances, I was a (relatively) young mom of three who was in the process of having my faith slowly thawed out after many years of confusion and anger at the God I had concluded must exist but couldn’t possibly care about me.  Frances taught a discipleship Sunday School class at the church our family had recently started attending, and I don’t remember a word of what she said that first morning because I could not stop staring at her Bible.  The cover was tattered and the pages were filled with markings—highlights and underlines and notes scribbled in the margins of what seemed like every single page.  In my naïve state of awe, I vividly remember assuming that she must have lost her husband or a child or endured some terrible hardship to have spent that much time reading her Bible.

Frances went on to become a spiritual mentor to me during our years at that church and even after we moved away, until hardships in both of our lives stole our opportunities for long telephone conversations.  But I have never forgotten her Bible, despite accepting that my love for having multiple Bibles—one in my book bag, one in my church bag, one from when I was thirteen, one by my special chair…—means that I will likely never have a Bible quite like Frances’s.

But because of the testimony her Bible spoke to me that Sunday morning almost sixteen year ago and some internal vow I likely made to seek that kind of “relationship” with my Bible, I constantly write notes in all of my Bibles.  Sometimes they are from messages or sermons I hear, but more often they are notes about what God says to me individually through particular passages.  Often I will write people’s names and dates in the margins so that I will remember a word someone shared with me or that God gave me to share with someone else.  Frances taught me to do that all those years ago, and the older my memory gets, the more I appreciate it.

After Easter a few weeks ago, I was trying to determine what to do for a devotional since the one I had used for Lent was (technically) over (even though I somehow managed to not finish the last three days of it!?).  I felt the Lord leading me to spend some time reading through the margin notes in my most marked up copy of the Bible, the one I bought while Frances mentored me.  I had never done this in a deliberate, systematic way, and the experience captivated me!

First I realized that the name at the front of my Bible was no longer accurate, so I crossed through it and symbolically dated the corrected surname as I wrote it onto the page.  I saw my “cardboard testimony” from 2011:  “Once a hopeless sinner; now a hopeful sinner hidden in Christ.” Yep, still true!  I read a note I had written on the title page after taking a two-year Bethel Intensive Bible Training course with my pastor: “The Bible teaches what it means to teach.” (Bethel 2003-2005)  I read life-giving words of prophecy and encouragement that had been spoken over me throughout the decade and a half that I had used this Bible, including most of chapter 14 of the book of Exodus that I have written so much about these past few months.  I remembered people and events I had not thought of in many years and read their cards and notes that had meant so much to me that I had placed them into the pages of my Bible for safekeeping.

Eventually I stumbled upon a piece of notebook paper neatly folded and tucked into the Book of Ezekiel.  At the top of the page, I had written “For Mother’s Day 2015…”  As soon as I began to read, a flood of negative memories filled my mind.  I recalled sitting in my car by a lake, sobbing and scribbling my heart out to the Lord that Mother’s Day afternoon.  My marriage had slowly and quietly become a place of deep darkness, and the toxicity that resulted in both of us had finally started to spill out over the entire family.  Knowing my children were now experiencing the pain of our mistakes broke my mother’s heart.  Words like failure and poison and darkness and details I would never want anyone else to read filled the front and back of that single sheet of notebook paper.  As difficult as it was to read and remember that day, I am so grateful that I captured and saved my desperate outpourings. Near the end of the back page, I had written a prayer…”Come Holy Spirit, come!  Send angels to minister to my broken heart and to bind the wounds.  Fill me anew and let me focus my eyes upon you, and soften my heart toward those who have hurt me. Redeem my days, oh God.  Let them not be in vain.”  And alongside the prayer I had written this Scripture that the Lord had immediately shared in response:

“For this is what the Sovereign Lord says:  I myself will search for my sheep and look after them. As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep.  I will rescue them from all the places where they were scattered on a day of clouds and darkness.” (Ezekiel 34:11-12, NIV)

I then turned to that passage in my Bible and saw a note in the margin dated 12/16/12—just before Timothy’s first Christmas with us—a Christmas we spent in the Transitional Care Unit at the Children’s Hospital.  The note in the margin said, “I am the Lord’s precious and loved sheep and He will always care for me (vision in prayer time).”

The Lord had given me that vision two-and-a-half years before that miserable Mother’s Day in 2015.  I may not have known all that was to come—the death of a child, the adoption of twins, the destruction of a marriage, the unraveling of a family—but He knew, and He promised in advance to search for me and to look after me and to rescue me.  And He reminded me of that promise when the darkness became so thick that it overwhelmed me.

Turning page after page of my Bible, I could see so clearly how He has kept His promise to me and to my children. It may not have been in the ways I expected or even wanted, but He is faithfully walking me THROUGH (not around) the dark valley to a place of light and abundance.

1 Samuel 7 recounts the story of Samuel calling people to abandon their idols and false gods and return to the Lord with all their hearts.  He then sacrificed and interceded on behalf of the Israelites, and God delivered them mightily in a battle with the Philistines. Samuel responded by setting up a stone.  “He named it Ebenezer, saying, ‘Thus far has the Lord helped me.’” (1 Samuel 7:12, NIV)

As I flipped through my Old Testament notes, I realized that the value of capturing them isn’t just to remember the past.  It is so much more. Every time I remember His faithfulness, I lay an Ebenezer stone.  The stones not only represent the Lord’s provision in the past, they provide a place of sure footing for walking forward.  Some are boulder-size, representing major deliverance or miraculous provision.  Others are small but much-needed gifts of a timely word of simple truth spoken just when I needed it most.  No matter the size of the stones, I can stand on them, resting in His kept promises and gaining strength for that next step.  The path He has for me is not visible for miles ahead but is revealed one stepping stone at a time.

I call upon Him. He answers. I remember.  And another stone is laid, ready for my next step of faith.

“I will repay you for the years the locusts have eaten—the great locust and the young locust, the other locusts and the locust swarm—my great army that I sent among you.  You will have plenty to eat, until you are full, and you will praise the name of the Lord your God, who has worked wonders for you; never again will my people be shamed…And everyone who calls on the name of the Lord will be saved; for on Mount Zion and in Jerusalem there will be deliverance, as the Lord has said, among the survivors whom the Lord calls.” (Joel 25-26, 32, NIV)