I was driving to pick up our son Sam, who was just seven, from baseball practice. Daniel was three months old at this time. On the way to pick Sam up, he started to cry. Up to this point in his life, I am not sure he had ever been left to cry for more than a few seconds before someone had picked him up. On this particular night, he had to "cry it out" as we took the short drive to pick up Sam.
Babies should be able to cry.
I talked to him the whole way to the field, telling him I would feed him as soon as we got there. Abby was two years old and was babbling to him too. I noticed as we were driving that his cry had changed. I thought he was just getting sleepy. I was wrong. When I parked and opened the sliding van door, there was my precious baby boy blue as a blueberry in his car seat. He was blue and lifeless.
I quickly got him out of his car seat thinking he may have spit up and aspirated as we were driving. So I turned him over to pat his back, but as I did his whole body fell forward, limp as a noodle. I grabbed my cell phone and dialed 911 all the while thinking about the scene that was about to be made.
When the ambulance arrived, they immediately hooked him to oxygen. The coaches wife (whom I had not yet met) was already in my van telling me she had my other kids. Brent was 40 miles away at the pharmacy he was working at that night. Even with the oxygen, Daniel stayed a blueish-grey tint the entire ride to the hospital and the EMT's were somber and quiet while working.
I prayed. As we drove down the stretch of road to arrive at Children's Hospital, I imagined the spiritual battle happening for Daniel's life. The initial doctors that saw Daniel told me they did not expect him to survive the night. They also told me that if he did, he would probably have severe brain damage due to the lack of oxygen he experienced.
Again, babies should be able to cry without dying.
We know now, that Daniel had his first PH crisis. Thankfully both of the initial things I was told did not come true. Daniel did survive that night and he did not have permanent brain damage. We would stay another 35 days at Children's Hospital and learn that Daniel had an extremely rare disease called idiopathic primary pulmonary hypertension. This would become the first of many hospital stays, ambulance rides, helicopter rides and emergencies.
Every year after this initial crisis, our family has celebrated Daniel's life on April 7th. We have bought a rainbow cake, presents for ALL the kids (because they are the best big brothers and sisters ever) and usually had some sort of dance party per Daniel's request. When Daniel died on April 1, 2016, Brent and I knew that his funeral/celebration of life would be on April 7th. God and His sovereignty are undeniable themes in Daniel's short life.
One day I plan to write out his whole story, but today I want to share about this April 7th.
Rainbows have also been a theme through Daniel's life. If you have read this blog, followed Daniel's caringbridge (https://www.caringbridge.org/visit/danieljames/journal) or spent any time with us you know how rainbows have been something the Lord has given us in the most difficult of times. Today was no exception.
Yesterday was April 7th. Our kids all had a variety of activities. Brent and I have talked a lot about how as years go forward we are going to have to be more flexible as far as when we get to celebrate events like this as a family. The first anniversary after his death, we started a tradition of releasing balloons at his grave. We knew with the schedule this year that yesterday would have been rushed, so instead we planned for the balloon release today.
Yesterday we still celebrated with a rainbow cake, sunflower cookies and Abby made a beautiful canvas of Daniel. We all shared a favorite memory or two...we have a million...and then ate cake together before we went separate ways for the rest of the day.
Today we picked up our rainbow balloons and struggled in the wind to get them all cut and held tightly for our release. Before we started struggling with the balloons, we gathered around his grave with beautiful new flowers and prayed.
I thanked God that Daniel's life fulfilled what God wants for all of us. To bring Him glory. I prayed that despite the pain and suffering, I am thankful for the example that Daniel was to us of perseverance. I thanked God for Daniel's love for Jesus. I thanked Him for how he shared about the "boo-boo's" Jesus took and how he often spontaneously praised the Lord. I thanked the Lord that even all of Daniel's favorite songs were about the hope he had of a future. "Home" by Philip Phillips was the only one that didn't speak specific about Jesus, but was one of Daniel's last words and is the place he is now. Home. I thanked God that the words we were about to play of "My Beloved", (Daniel's favorite song when he died) have totally come true in his life. Then through tears I asked the Lord if he could just let Daniel know we were letting all these balloons go for him.
Cue balloon struggle! :)
"My Beloved" playing we all lined up with our balloons. Brent was recording (with his phone...so I do not have that here)...and we let the 72 rainbow colored balloons go. Every year I want more, but the kids said we need more people to do more.
We watched.
And then I saw it. We were so focused on watching the balloons that none of us noticed it at first. When I saw it I squealed. A real squeal. And then burst into tears.
A rainbow.
Again and again and again a rainbow. As I look back at the other photos, it was there when we released the balloons I just didn't notice it until after. Although it seemed to get brighter after.
It never ceases to completely amaze me. Moments like these His grace is so overwhelming. And I am so thankful. I am thankful for HOPE. You see, the part of the story of today I did not yet share is how our family kind of started to unravel before we got to Daniel's grave. Little irritations, impatience...they often start to spread like wildfire on these days and anniversaries. So today, before we had prayed graveside, I had gathered my family around Daniel's grave and reminded them that we have an enemy. An enemy who hates that even in death we are here to celebrate and praise our King Jesus because of the HOPE we have in Him. He hates the light. He hates that Jesus is even bigger than death and that we believe this to be true. He hates that we are here with our hearts filled with hope. Think about this I said, be kind to one another. Build each other up and extend the grace to each other we all so desperately need. Do not the let enemy tear our family apart.
Part of Brent's prayer had been about us "continuing to march on"...a rainbow at the end of this time spent together was a huge encouragement to our hurting hearts...a huge encouragement to "march on". And a huge moment that brought our family closer. I pray my kids will not forget the faithfulness of our Father.
Thank you Jesus for the hope we have in you.
I love you Daniel! I hope you got to see the balloons. If you had been with us, I can hear you laughing as they filled the sky.
"I will praise you, LORD, with all my heart; I will tell of all the marvelous things you have done." Psalm 9:1
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