It has been one week since life started to change for me.
Last Wednesday, I received a call from my brother.
"Have you talked to Mom?" he said.
My heart sank. I knew by the tone of his voice that something was wrong. As you'll read below, my sister's new baby has had quite a struggle since his birth two months ago. I immediately thought of him, but prayed that I was wrong.
"They took Johnathan to the hospital, he's not breathing."
Oh no, I thought...I didn't want to be right.
Over the course of the night and the following morning, I sobbed more than I ever have, to the point that I made myself sick. I was so confused. I didn't understand how God could be watching what was going on. It became clear that Johnathan was going to die. How could this be happening?
Thursday afternoon, during the one o'clock hour, I was in the car driving to New York, praying that I would be there before he breathed his last, when my mom called and told me that he was gone. My sister's sweet baby was gone. She was living my worst nightmare.
I was only 30 minutes into the nine hour hike to NY. The rest of the ride was incredibly emotional. I can't believe I made it there. I cried the whole way. Emily and Levi were in the backseat, silent. Emily was sweet enough to understand. Greg was home with Avery and Kaleb. Not even his touch could soothe the ache inside of me this time, so it didn't matter that he wasn't there.
When I arrived at my mother's house, I clung to Dan, Cherie's husband, without any words that could help him. When my sister came out of the bathroom, I just held her and cried, "I'm sorry, I'm sorry..." over and over. She is my little sister and I'm supposed to help her. I'm supposed to make her pain lessen. But I couldn't. All I could do was cry.
Over the next four days, I saw God pour himself into Cherie and her husband Dan with an intensity that was nothing less than His grace and the answer to many prayers. Their pain wasn't gone, but they trusted that God hadn't forgotten them. They said goodbye to their own child, and amidst the pain, I saw them love my children just as much as ever, if not more. They were proof that God's grace is sufficient.
I have learned so much from my sister. I will never look at her the same way.
I will never look at my children the same way.
I will never look at God's sovereignty the same way.
At Johnathan's funeral, my brother Aaron read a letter that my sister wrote with her husband. I have included it in this post. Be ready to shed some tears...
I love you Johnathan. You have changed me...
Today we write this letter not only to say goodbye to our son, but to honor his memory. To truly understand the impact my son has had in our lives you must know his story from the beginning:
When I learned that I was pregnant with Johnathan we were overjoyed that God had chosen us to be the temporary keepers of a beautiful child. A sense of pride rushed over us like we had never known before.
Within one month God had begun to test our faith and teach us that we were going to have to trust Him. I began to see signs of a miscarriage at nine weeks and was ordered to stay on complete bed rest for an entire month. After many tests, and medications, we went into the doctor’s office to find that this tiny life was still fighting. We then had a few wonderful months with no other complications and got to watch our son grow bigger each week.
What a precious gift to witness God molding little ears, a nose, arms, legs, fingers, and toes. We were so grateful that our little baby was forming right before our eyes. At 18 weeks we went into the doctors for an ultrasound to find out the sex of our baby; it was a boy. A son! We were going to have a son!
Just as quickly as our joy came, the rain did as well. A dark cloud hovered over when our doctor told us there was a problem. She was concerned with some fluid she was seeing on his brain. She couldn’t tell us anything indefinitely, but I saw several specialists and had many tests done. I was bounced between three different hospitals trying to determine what was happening. After weeks of not knowing, we spoke to a Neurosurgeon at Vanderbuilt Hospital. He diagnosed our son with Congenital Hydrocephalus.
There was a connector in his brain that did not develop correctly and would not allow his spinal fluid to flow out of his brain cavities properly. He told us the cavities would keep getting bigger and bigger compressing his brain which could cause possible mental retardation or complete brain death. The outcome was very grim. The doctor also told us that if the baby survived at all it would be a miracle, and if he did survive he would most likely have severe genetic defects. There was another possibility that his brain could also be so severely damaged and that he may need machines to stay alive.
After about a month Dan and I decided that we needed family around to make it through what we were sure was going to be a very difficult time.
When we first came home and went to Women and Children’s Hospital the prognosis was still the same. However, the doctor’s were a little more optimistic. We knew he would need surgery right after birth to place a device called a shunt in one of his brain cavities so that the spinal fluid could be bypassed into his belly where it would be absorbed and discarded.
We had also consulted with the Neonatal Specialist about what we could expect in the delivery room. He said that he did not anticipate any additional problems but that there was a possibility Johnathan would never be able to start breathing on his own.
On August 7, 2008 our most precious gift was given to us. He was born via c-section at 2:50pm; weighing 8lbs, 13oz; measuring 20 inches long. When they first pulled him out, to our relief, he let out a big cry. When the doctor’s were done checking him, they wrapped him up and handed him to my husband where he was so content to finally be in Daddy’s arms.
The very next day, they took Johnathan into surgery to place his shunt. It took three hours and when the doctor came out; he told us everything had gone well. I let out five months worth of tears that had been building up from not knowing whether my son would live or die.
Johnathan was in the hospital for 13 days where he defied all odds and exceeded all expectations. Finally, they let us take him home.
Johnathan thrived being in his own home. He ate well and began growing. He was hitting all of his expected milestones. The most wonderful thing was that once his shunt was in place, my son was perfectly healthy. There was no retardation whatsoever; he was a normal two month old infant. He had shown the doctors and nurses that there is a great physician that can take better care of us that any earthly doctor ever could.
It was exactly eight wonderful weeks that we were given with our precious miracle. On October 1, 2008 my mother went to wake Johnathan up from his nap. When she found him he was not breathing. We rushed him to the hospital where they were able restart his heart; but it was too late.
After 12 hours and several tests Johnathan was declared brain dead. He was in a coma and only machines and medicine were keeping him alive.
We asked Pastor Sam to come and be us, and to also dedicate our son to the Lord. Then, we all said goodbye and took him off life support. They placed my beautiful son in my arms where he slowly took his last few breaths, and passed from my arms into the arms of Jesus. The last thing I whispered to Johnathan was that “I promise to tell your story for the rest of my life.” So that people may know Christ and His “beautiful grace”.
We were given 56 days with Johnathan before Jesus decided to take him home.
We do not dwell on the time we have lost, but are blessed for the time we were given. We loved our son more than anything in this world, but it was time for us to let him go. My husband and I would ask one thing of all of you here with us today: Please stop making excuses and open your hearts to the one who can heal them. Life is to short and you never know which day may be your last.
For us, even though God’s answer was no, Johnathan; whose name means “given by God”, had a life full of purpose and meaning. We may not understand why all of this had to happen, but if one person comes to know Christ through the testimony of Johnathan’s life…then that is enough for us to let him go.
Parents, Grandparents, Aunts, Uncles, family and friends: go home today and hug your children, be grateful and never take advantage. Help them to fulfill the purpose of their lives, and more importantly, love them with every fiber of your being.
Every time you think of our Johnathan remember that his life stood for God’s beautiful grace.