I was looking at some old pics from months and years ago to put as my cover photo on our Facebook page. Thank you Facebook ‘On This Day’ reminder to show me pics of my kids from a year ago.
On This Day in 2015, I posted a pic of the twins. Callia had some itchy gums and was babbling to her brother about them. And Matthew babbled something back and put his hand in her mouth and started wiggling his fingers. It was one of the first and the cutest twinning interactions I saw. It was really cool.
I was thinking back at that time. Then I started thinking back at their birth. Then the pregnancy. Then two years ago from today when I was still on this pregnancy high when all was well, all was perfect and I knew nothing about something being gravely wrong.
The previous post I made called Sanctity of Life was from a mother who was in the same exact position as I was in while pregnant. I don’t know the diagnosis she was given, but I believe it was just as awful as ours. And she writes so beautifully and eloquently about the Grace that God bestowed upon her before, during and after her baby’s birth. Her baby ended up passing away 3 hours after being born.
Another mother I had the pleasure of meeting, her daughter had the same diagnosis as my son. Same issues during pregnancy and same problems in the NICU. Her baby Khloe passed away Saturday afternoon.
Khloe’s NICU stay was eerily similar to Matthew’s. Right down to their age of when their hearts began to give way to the fight. And I can’t help but wonder… what did I do different?
I am so grateful for the Lords miracles he made throughout my son’s life. It is hard to explain the miracles that occurred in the NICU. Miracles that no one could believe until they physically walked into our sons room. His heart was beating, his lungs began to clear, his dialysis solution went from red, to orange, to a brown tint and then to completely clear. I tend to compare it in my head from when Jesus turned water to wine. But in this case, the other way around.
Are we one of the “lucky ones”? Is there something our son did differently?
I don’t believe that our family or our faith is better or stronger or more favored than anyone else’s. I believe the Lord loves us all. However, I can’t help but believe that He has a greater plan for us….for our son…for me.
It breaks my heart knowing there are families out there who have had to let go of their child, like I did. But their child was never brought back.
I was told about something over a year ago called, “NICU guilt”. When you feel guilty that your child made it and others didn’t. Similar to survivors guilt. There is a pain in my chest that will never go away for these baby’s. And I feel that, because of this survivor’s guilt, I tend to not brag about my sons progress. I feel bad about it. I feel bad about saying how goos he is doing. But I also feel that I need to keep giving God all His Glory for all that He has done. My son IS A TRUE MIRACLE.
Thats where I’m at right now. I feel sad and grateful, excited and devastated, blessed and cursed all at the same time.
I will write more when more comes to mind. This hour long ride to the hospital with my son gives me time to get through my thoughts. Oftentimes I run out of time… just like now. lol
Blessings to u all.