Where do I begin… First of all I can’t express my gratitude enough for the food, messages, and calls from friends, family, and people I had never met offering comfort in this difficult time. I’m sorry I haven’t responded to everyone, but talking is not my strength, so it will take me some time to respond.
Secondly, I feel it is only fair to share the events that led to Benjamin gaining his first in line position at the gates of Heaven. Yesterday, Benjamin started with diarrhea. After only one diaper, he turned a little pale and his heart rate increased. After a few hours of trying to manage at home, we decided around 4pm that I would take him in for some fluids and we would return home a few hours later. After attempting fluids by IV for a few hours, Benjamin showed no signs of change. I kept a close eye on him, and started noticing his heart rate decreasing. Normally this would be a sign of improvement, but I was cautious. After a few minutes at an “improved” heart rate, the monitor started to alarm. I looked over assuming it was a high heart rate alarm and noticed his heart rate was low. Looking at Benjamin, I yelled at him and he didn’t respond. I started yelling for additional support. They started chest compressions and I started bagging. Looking up I saw his heart had stopped, but we continued. I continued bagging until another came in to relieve me. After an hour long attempt to revive Benjamin, he was officially gone. I know Benjamin passed away right in front of me, but I wanted all attempts made to save him.
I have always had a peek into Benjamin’s future, whether I realized it at the time or not, since he was in the womb and this was no different. Benjamin has struggled for the past few weeks, and I noticed after making a slide show for his birthday, just how progressive his diagnosis was. He hadn’t moved or smiled like he previously did, but because we were just so happy to have him, I barely noticed. I was so aware without realizing that an hour before he died, we had a talk. Never expecting that today would be the day, I told Benjamin, “Whenever you are tired of fighting, you just let me know. That is between you and God and it should be on y’all’s terms. We will be OK.” Never did I expect yesterday to be the day. We had gone in too many times in the same situation and been just fine. Benjamin just needed to hear, “We will be OK.”
Knowing we would probably lose Benjamin at an early age, I had always prayed for him to go peacefully…and he did. His heart just gradually slowed down and stopped. No struggling and no discomfort, and I thank God hourly for listening to my prayers.
After they finished trying to revive him, a priest came in to give him his last rites and to pray with us. The staff cleaned up Benjamin beautifully. He looked like an angel with flawless skin. His absence of movement was not far from his own ability so holding did not feel different at all. I did have them remove all tubes, cords, and lines. I had never held Benjamin before without his life lines. KC and I sat there for hours holding Benjamin, kissing him, trying to remember every part of him, crying, and consoling each other.
Today I woke up in a bit of a nightmare. Trying to figure out what to do, how to grieve, how not to second guess my decisions, how to be an example for the girls, how to console others, how to continue. We will continue to take a moment at a time and we appreciate all prayers for strength.
I try to keep this time more of a celebration of his life than a grieving of his death, but it his hard. I have to remind the girls that Benjamin is the lucky one in this situation, and that it’s ok to miss him.
I’m so happy knowing he spent his third birthday surrounded by family and friends that loved him dearly. He was truly a special kiddo and loved by so many. I thank him all the time for saving me and for making me a better person.
At this time, the funeral is set for 2pm on Friday at Jesus the Good Shepherd with the visitation before from 12-2pm. We are asking in lieu of flowers, that a donation be made in Benjamin’s honor to the Smiles Park in West Monroe, LA.