By Jaci Jackson

September 2, 2012


On April 7, 2010 our lives forever changed. When I went to pick up my son Sam from baseball practice I found my 3 month old baby Daniel limp and blue in his car seat. I immediately called 911.

Upon arriving at Children’s Hospital in Plano, I was told that our son was gravely ill and might not make it through the night. Daniel had what they call an Apparent Life Threatening Event. It would become the first of many. During our initial 35 day hospital stay, the doctors discovered that Daniel has pulmonary hypertension. There is no known cure for this disease.

On October 6, 2010 Daniel had surgery to have a central heart line placed so that he could receive a continuous IV medication, which is not a cure, but will hopefully improve his quality and duration of life. The next day it looked as though Daniel would be leaving this earth. The surgery itself had taken a severe toll on his fragile body. In a hospital room that was quiet and somber, my husband stroked our son’s head, telling him how proud he was of him, while one of the nurses at the head of the bed softly cried.

That morning I was stuck in traffic on the Dallas toll way that morning and knew how grave the situation was. I sat in my van, all alone, not moving, and asked the Lord…more screamed…“O God, what am I supposed to do?!” And in the quietness of my heart, the Lord said, “Sing.” I turned on the radio and did just that: I sang. From way down deep, I sang. I did not know if I was joining the angels in welcoming Daniel home or if I was singing to the walls of my own prison falling. Thankfully this day I was singing to Daniel miraculously surviving.

Then just 3 months later on January 12, 2011 it looked as though Daniel would be leaving this earth again. His heart was failing. And during this hospital stay we were visited by the palliative care team. Brent and I were asked where we wanted to have Daniel die – at home or in the hospital.

But thanks to the Lord Jesus, the prayers of His people, and the help of wonderful doctors that with no medical explanation, Daniel recovered! We have been given the gift of time and life! And we live life one day at a time.

I have held my baby 19 times stiff and lifeless. 19 ambulance rides, hospital rooms prepared for his passing, financial hardship, no known cure, the death of our son ever present, a continuous central heart IV with an IV medicine that can result in death if interrupted for more than 5 minutes. There has been more uncertainty, disappointments, and tragedy than I can share in this short story.

And yet I can say that by choosing to trust Jesus, to take Him at His Word, to cry out to Him, to ask others to cry out on our behalf, and to surrender to His will, God has made Romans 15:13 a reality in our home. It reads, “Now may the God of all hope fill you with all joy and peace in believing so that you abound in hope by the power of the Holy Spirit.” And the God of all hope has. Never have we had more reasons to be joyless and afraid. And yet in our heartache and brokenness, we truly do have joy and peace because we worship a faithful God. He is a God who holds all things together and according to Psalm 139, “ordained all of Daniel’s days before one of them came to be.” A God who tells us in Romans 8:18 that “the present sufferings are not worth comparing with the glory that will be revealed in us.” A God who promises to cause all things to work together for good (Rom. 8:28). A God who promises that his grace is sufficient. A God who promises to never leave us. A God who promises that one day there will be no more tears or suffering. A faithful God.

And I trust Him.

 Daniel is a sweet, sweet boy but is still very fragile. His disease seems to be advancing some and no one can tell us for sure how long he will be here. Please pray for him. Our battle is far from over, but we are going to keep trusting our Jesus. We thank Him for today as we hope and pray for many tomorrows.