We all have those defining moments in our lives that stand out from the rest. I will never forget the day that changed my life, the day I was told my son, my first born child, would most likely die.
My beautiful baby boy Alex, was born with a very serious congenital heart defect. We were not aware of the problem until he was five days old. There were signs that something wasn’t right, but the medical staff thought it was possibly an infection. The strange thing is, the day after he was born, I looked at him and knew in my heart something wasn’t right. Before any symptoms were presented, my motherly instinct kicked in.
Alex went through many tests. Several days later we were told by a team of cardiologists that our son was very sick and needed heart surgery immediately. My husband and I sat in despair as we were told that our precious child had a slim chance of surviving, and if he did, he would not lead a normal life. We were devastated.
My milk was starting to come in that night at the hospital. I remember feeling how sore my breasts were and how I wished I could just hold and feed my baby like the other mom’s down the hall. My baby was being transported to another hospital, the one he never left….
Alexander lived for 22 days. He went through over eight hours of heart surgery and was put on ECHMO, which is a kind of life support that works for the heart (similar to a bypass machine). He fought hard, but the ECHMO took it’s toll on his little body and it started to slowly die.
He was baptized in the hospital while in the PICU, and then I got baptized two days later. I held his little hand while I was being baptized by the chaplain in his room. All of a sudden, he raised his hand and pulled mine up with it. It was incredible, as he hardly moved at all. I believe he was aware of what was going on, and that one of his purposes in his short little life was to make sure I was baptized.
Shortly after that day, I held my son as they removed him from the machines that were keeping him alive, yet killing him at the same time. I held him as he passed away and didn’t let go for hours. I would put him down on the bed, and he looked so tiny. I knew I had to go, but I went back and held him many more times. He was hooked up to machines almost his entire life, and I never got the joy or feeling of holding my baby. I just held him and looked at his beautiful face without the tubes. I smelled his tiny head that had a little bit of dark curly hair.
When I left the hospital, I remember looking up at his window. The light was still on in his room…. Then we drove away, to a home with an empty nursery, and a family with broken hearts and empty arms.
If you have lost a child, just know that the pain will not be as intense as it is in those first hours, days, weeks and months. The first year is almost unbearable, but it does get easier to live with. We as bereaved parents have no choice BUT to live with it. The best thing we can do is talk about our child and our experiences, and share them with others who are suffering the greatest loss in the world.
I wish you comfort and peace.
These two books I have written may be of help to you.
Click on the covers for further details.
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