In the spring of 2009, our family received the wonderful surprise: We would be welcoming a fifth baby into our family! A few months later, we found out together that this new baby was a little boy. However, before we ever went to the ultrasound, my mommy's heart knew this baby was Daniel. A name the Lord put on my heart long before I ever found out I was having him.
We welcomed him into the world early on the morning of January 6th, 2010. And it was love at first sight, for all of us!
Daniel was a true celebrity in our home. From the first moments he was awake, to the final moments before I put him to bed, his big brothers and sisters loved-on him. The morning chorus sounded every single day as he woke up. “Daniel! Daniel! Daniel!”
As sweet as all of this was, my heart was troubled. I often held Daniel and just wept. I wondered aloud to my husband and to friends if I had “baby blues.” In hindsight, I think the tears were a part of God’s grace preparing my heart for what was about to change all of our lives forever.
The evening of April 7th, I had all my kids in the van and we were headed to pick up my son Sam from baseball practice. On the way to the field, Daniel, who was now 3 months old, started to cry. I talked to him and told him, “Hey buddy, as soon as we get to the field I will take you out and feed you!” I sang, I made silly noises, I continued to talk to him on the short five-minute drive.
When we got to field, I went to get him out of the car seat, and to my horror, he was blue as a blueberry all over! I got him out as quick as I could, turned him over to pat his back, and he fell limp in my arms. I grabbed my cellphone and dialled 911.
From there everything became slow motion.
I remember the ambulance ride that seemed to take forever getting to Children’s Hospital. I remember the doctors telling me “If he survives . . . ”, “We do not know what’s wrong, but your baby is gravely ill . . . ”, “Is there anyone we should call . . . ?”, “Most likely he has permanent brain damage . . . "
Praise God, Daniel did survive that night and he did not have permanent brain damage! We would spend the next 35 days at Children’s Hospital and it was during this stay that we found out Daniel had Pulmonary Hypertension. As time went on, it became clear that there was no known reason for his disease. There was also no cure.
There is so much I could say about these years and the precious boy that Daniel was. Today I want to share part of his story that happened in the last weeks of his life and the weeks that followed his death.
March 11th, 2016 Daniel was admitted to the hospital for the first time since 2012. The few weeks that would follow would become some of the most painful and horrific I have ever experienced. We would never again bring him home.
But Daniel . . . How evident God's grace was in his short 6 years of life!
Amidst Daniel's suffering and the horror of blue spells, pokes, and tests, his love for life filled those hospital walls. He had smiles and lollipops to share with everyone. He brought his headbands and weights to the hospital and impressed the nurses with his upper body strength. He pushed the limits with his "poopy" and "wee-wee" talk, ironically now one of our favourite memories. He comforted others "Boo-boo's" and showed concern for their equipment and machine beeps in common areas. He had a tent bed filled with his favourite animals, games, and toys. He made sure the diffuser with his favourite oils was going and it made the halls of our wing of the hospital smell extra minty! He bought a new pair of socks and sticker packs every time we visited the gift shop. He watched adoringly as his family played baseball in the courtyard of the Children's hospital. He asked everyone who visited to play "Mem-Rie" (memory). He smiled through his pain. He let his light shine.
One of the nights that I came home to sleep, I spent a few hours in prayer on our kitchen floor. I cried. I wept. I begged God for His help. I professed my love for Him. I thanked Him for who He is and for letting me be mom to five precious kids. I asked for Him to give us answers. I asked Him for more time. I asked Him to let us bring our sweet Daniel home again. I poured my heart out to Him. I cried until I had no more tears. As I got up and sat down on our couch Psalm 34:4 was whispered to my heart,
"I sought the LORD and He answered me, and He delivered me from all my fears."
Audibly I said, "Okay?"
Because it made no sense. As I was crying and praying and calling out to the LORD I was not feeling scared, fearful or anxious. Instead, I was feeling sad, weary, and brokenhearted.
It was not until after Daniel died that this response was made clear to me.
Regularly throughout Daniel's short six years of life, I asked the Lord that he would let me live one day longer than Daniel. I worried about who would care for him like me. Other prayers said regularly were for his line to not break, his pump not to malfunction in the middle of the night without me knowing (as an interruption could result in death), for emergencies to only happen where we could get help quickly, for kids his age to be kind to him, and on and on the list went.
All of my fears had to do with Daniel's living. There was no fear in him dying. I knew where he was going; he loved Jesus.
I am currently again reading "Hudson Taylor's Spiritual Secret." I first read most of this book when Daniel was alive. Since his passing, I have not found more kindred words to what my own heart is feeling than in the words penned by Hudson Taylor to his mother after his 8-year-old daughter Gracie passed away,
"Our dear little Gracie! How we miss her sweet voice in the morning, one of the finest sounds to greet us when we woke, and through the day and at eventide! As I take the walks I used to take with her tripping figure at my side, the thought comes anew like a throb of agony, "Is it possible that I shall nevermore feel the pressure of that little hand . . . nevermore see the sparkle of those bright eyes?" And yet she is not lost. I would not have her back again . . .
"I think I never saw anything so perfect as the remains of that dear child. The long, silken eyelashes under finely arched brows; the nose so delicately chiseled; the mouth, small and sweetly expressive; the purity of white features . . . all deeply impressed on heart and memory. Then her sweet little Chinese jacket, and little hands folded over her bosom, holding a single flower--oh it was passing fair, and so hard to close forever from our sight!
"Pray for us. At times, I seem overwhelmed with internal and external trials . . . But He said, 'I will never leave thee, nor forsake thee,' and 'My strength is made perfect in weakness.' So be it."
The words and description are different for my beloved Daniel, but the heart of love and missing and trust in the Lord is the same.
Later in the pages of the book, they lose a son too. Amidst many words, Hudson Taylor wrote,
"About 2 of our little ones I have no anxiety. They rest in Jesus' bosom."
Daniel now too rests in Jesus' bosom. This is what I mean by I had no fear in Daniel's dying. I am confident of where Daniel now lives. I am sure this is why the Lord spoke the words of this Psalm to my heart in the weeks before Daniel died. My fears for Daniel are gone. I just miss him. Terribly. I feel the "throb of agony" that Hudson Taylor spoke of whenever I think of not seeing that sweet smile, not hearing Daniel's precious laugh, not holding him close, not kissing those precious cheeks, not watching those beautiful brown eyes dance with joy and mischief.
But one day . . . One day there will be a great reunion! And as Hudson Taylor wrote about his Gracie, I would not have him back. The Lord was so kind and merciful to Daniel, for He is far better off now. The children I have anxiety over are the ones who are living!
Later in Psalm 34, verse 18 reads,
"The LORD is near to the broken hearted and saves those who are crushed in spirit."
I trust that these words are true. My feelings go up and down, my emotions roll like the tide, but I trust in the sufficiency of His grace, I trust that He is near. I trust that He will never leave or forsake me. I also believe these words of Hudson Taylor:
“It does not matter how great the pressure is. What really matters is where the pressure lies -- whether it comes between you and God, or whether it presses you nearer His heart.”
Oh, that I would be pressed nearer His heart!
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Jaci I remember the early years of you rushing to children’s with Daniel. I remember all of ST praying for a miracle. But how beautiful it is to see he Lord pressing you closer to him even through this!