Today, we learned Charlie has an extra chromosome, Trisomy 21, or Downs Syndrome. It was no doubt a sobering moment. Debbie and I now know the incredible calling we have as parents. We get to love and serve this child like we have no other. We consider it a privilege to have this calling, it seems right.
Had I written his genetic code, I would have left that extra chromosome out. However, God wrote that code long before me. To compare my will (did I tell you I am a sinner? Romans 3:23) with God’s will (among all things good, God is love 1 John 4:8) is like comparing a grape to the sun. It’s sweet and all, but shrivels up when held close. God determined this for Charlie, and God is infinitely good. Who am I? I am undeserving of God’s mercy and blessing.
This is not about me, my bride, or even Charlie. I am excited to learn how God will make Himself known through Charlie. Charlie is a warrior, he has been fighting since his last day in the womb. God will use Charlie for good, I am eager to learn what good that will be.
I remember whispering to him and kissing his little head after we entered the Childrens ER in Parker. I said ‘You fight Charlie, you fight! Don’t give up, Jesus will help you, trust Him, Jesus will help you’. We asked God to help him, and He did. There must have been 15 people in that tiny room, working in unison, using their God given talents to bring Charlie back to life. God helped Him, and is helping him now. I did not lie to my precious son, God is faithful
One doctor told me privately that if I wanted them to stop, to just let her know. I was quite taken that stopping was an option, but asked her to please give him every possible opportunity to live. She was invigorated, and went right back in to the battle. This is the flight team that performed CPR on Charlie and brought him to Childrens Aurora. They are briefing the NICU and Surgical team here.
Charlie is no accident or mistake, but a fearfully and wonderfully made soul, still made in the image of God. He is worth fighting for.
So, it is a privilege to have such a soul in our care. His siblings are so excited about their baby brother, it is as though they feel blessed by the news. A few days ago, I mentioned to my eldest son, David that we had requested this genetic test to know best how to care for Charlie. When I mentioned it could well be positive, he said something like “I think it would be good Dad, it would strengthen our family and help us to love each other more”. This is a testimony to you families we know with such a one in their families.
The nurse just turned off Charlie’s epinephrine (blood pressure med) pump about 20 minutes ago. Another battle down, he is handling it fine, his heart is maintaining pressure. Also his infection is “way down”. Earlier today, his O2 was reduced, other meds reduced, Drain tubes and stitched were removed, and one of many IV ports removed. God is answereing our prayer, He is healing.
One friend just said ” Hey bro, that kid is not going to have a lack of people loving him. It is going to be overwhelming!!!” We are humbled by the amount of love that has been shown to us. “But God shows His love for us in that while we were yet sinners, Christ died for us” Romans 5:8. You have been as Christ to us. My family and I are grateful.