I planned on writing in this blog all the time, charting new stories as I started a new life after the loss of my wife and then my remarriage and the birth of our daughter. But as with a lot of things - hardship and struggles come and derail even the most put together person. And thus my last post inaugurating this blog was from 2017 and now it is 2025.
Let me explain the gap as best I can. Our daughter was born at 23 weeks of gestation, what is today called a micro-preemie. So premature that they told us she may not survive the first 24 hours. So premature that they told us there was a good chance she would have heart developmental issues or a heart defect. So premature they told us she may have detached retinas and be blind her whole life. So premature that they told us there was a possibility of brain bleeds and/or cerebral palsy. She spent the first 5 months of her life in the NICU, and we spent those first months suffering with all the possibilities that might come....each more horrific to consider than the one previously told to us.
In the end we are eternally grateful that none of these things came to pass. She survived, her heart was fine, her eyes and eyesight were fine, no brain bleeds or cerebral palsy. We were blessed with a tiny little girl who was healthy. Except......she wasn't. Almost immediately it was clear that there was some things wrong. When you think of prematurity you think of these above worst case scenarios, nobody thinks about the "secondary" systems like digestion or development. And so almost from the beginning she would vomit anything and everything given to her. Breastfeeding, didn't work. Formula, didn't work. The doctors had to insert a Nasal Gastro tube through her nose into her belly directly and only then could we feed her. But even then she was vomiting constantly. And each time we had to change the NG tube it was like waterboarding your baby - screaming due to the discomfort of it, making sure you got it down into her belly and not into her lungs. And so we struggled with this from the time we took her home from the hospital until she was 1 year-old - at that time at the behest of her doctor she had her first surgery to install a Mic-Key button. A hole with a plug directly through her stomach and her belly, allowing us to pump or use syringes to feed her directly into her stomach.
And this is how we grew her from ages 1 through 5 years we had a feeding pump that fed her in the night, and we used syringes to feed her in the day. Moving from formula into pureed regular food over time. Any attempt to feed her orally was a complete failure. Even with this Mic-Key button she was vomiting anywhere from 10 to 15 times in the day - we actually carried a bucket around with us for years. When she was 5 years old she began to slowly eat small portions, anything large would cause her to vomit. By the time she was almost 6 we were able to get the Mic-Key button removed. She was eating, with some difficulty, but eating!
Then another hardship came to visit. We discovered in Kindergarten and 1st grade that she is "developmentally delayed". We were concerned and had her evaluated for autism, and were told thankfully that she was not. But it was clear to us and the doctors that while she was 6. years old....she was developmentally more like 4 years old. And this new challenge continues. She is now 8 years old, but developmentally is more like 6 years old. The local elementary school is great and has her on an IEP and work with her well. She is a happy, bubbly, mischievous little girl but we worry about her a lot since she is always behind the other children. And as they age the innocence of this world (which never lasted long to begin with) will fade.....but will remain for her longer. This can be a blessing, but also can be quite dangerous.
As if this wasn't all enough, during the same period I was alerted to some outstanding medical bills belonging to my late wife that I was unaware of - apparently in the last year of my wife's life she had tried to deal with them unbeknownst to me but hadn't been able to. And so I suddenly found myself in possession of a huge medical debt that I wasn't aware of, at a time when I had just invested money in a neighborhood cafe. Sufficed to say I had to damage myself financially to pay it off and once the COVID pandemic started the cafe failed as well.
Why am I telling this tale of woe? I think it is to show that I came through hell dealing with my wife's cancer and sickness and ultimate death. I rebuilt my life and moved forward and found love again and started a new and beautiful family. But the hardships of this life never stopped, there are always bad things happening to us or to those around us all the time. We are buffeted by the winds of this world and sometimes the wind never seems to stop blowing.
I have learned one important lesson through all of these hardships - sickness, death, love, premature birth, years of struggle with our daughter's health.........it is that we have no control. We live with an illusion of control in our lives. It is necessary to build that illusion and feed it, it is the only way to be comfortable and not live every day in a state of anxiety. Nevertheless we actually have no control, our lives can end or irreparably change in any moment. Embracing the lack of control is terrifying, but necessary to move forward. We as humans do it every time we start something new. But the true strength is in knowing all along that you are powerless before the furies of life - know it, and then decide to move forward anyway.
