My 3-month-old child was diagnosed with a rare congenital heart defect last month.
We’re both from the same working-class family in western Kentucky, but my son is from the poorest part of the state.
The boy has a rare condition called congenital amaurosis, which causes a baby’s heart to beat abnormally.
That means his heart won’t pump as hard and his heart rate drops.
He also has severe breathing problems.
As a result, his heart is naturally slow.
In addition to being a poor child, I was also the most stressed.
But the doctors told me it was a good thing.
I was going to be able to get him the surgery at the same time my parents got married, which was also scheduled for the same week.
I had to go into labor on my own, and that’s when I knew something was wrong.
I asked the hospital staff if they could have a nurse come and take my son’s temperature.
I told them it was only a few degrees below normal.
But when I got home, I saw my son had a heart attack, so I didn’t go to the hospital that night.
I called 911 and told them what had happened.
I didn “want to be a burden” to my family, the nurse told me.
I went to the emergency room and spent two hours there.
The doctors told them that the baby’s condition was good, and they had a plan to fix it.
It was so bad I couldn’t even finish my first sentence.
But I had a lot of faith that something would work.
I thought my baby’s life would be saved, too.
But it wasn’t.
As the days passed, the heart defect worsened and my son developed pneumonia.
By the end of the week, my wife and I had lost hope.
I cried and cried.
We tried everything we could to make things better for our son.
I tried calling my daughter, my son, my sister, and my daughter’s boyfriend, but nothing seemed to help.
Eventually, we called my daughter and told her about what had gone on.
I felt like the whole world was going out to help me.
We talked about what I should do and how I should feel.
My daughter’s mother, who had been a nurse for more than 30 years, said, “I wish I could have helped you.”
We talked it through, and she said, If you had a baby who had a congenital defect, I would be the one who would help you get the surgery.
So she came to my house and helped me get the operation at the very same time we got married.
My wife was so proud of me.
It made her cry and she cried.
It wasn’t until weeks later, when I told my wife I wanted to start my own business that she realized what I was doing was wrong, but not in the way she thought.
She was shocked.
My business is not what I thought it would be.
My son was my priority.
The surgery and the hospital stay have cost me more than $200,000.
My sister and I still have not gotten over the grief.
I want to give a voice to my daughter.
She told me I’m lucky I had the support of my wife, my mom, my daughter (who had my surgery), and my sister.
I’m not ashamed of my decisions, but I feel bad for not having taken the time to understand what I had done.
The biggest obstacle I had with the surgery was the cost.
I spent about $15,000 on it.
Now that it’s gone, I’m looking at about $80,000 in medical bills, which I don’t think I will ever be able, financially, to cover.
The cost of the surgery has also affected my work.
My doctor said I should get more experience to better understand what goes on during heart surgeries.
I have a job as a certified nurse-midwife, but the company I work for has been closed for several months.
I work from home for a living, and I want more flexibility.
I’ve also lost my job and my family’s income.
I lost my home, which is now the property of my children, who are now going through college.
And my children have started school and are starting on their own, so they need help.
I can’t even begin to imagine what it’s like to go from a job that provides me with income to one where I have to pay for my child’s surgeries.
My goal is to help other parents and to give hope to those who are struggling.
As much as I wanted this surgery, I didn.
I wanted it so badly that I wanted the surgery to happen.
It took more than a year for my wife to understand that I was in trouble.
But she has always been supportive and caring, and it made my whole family feel like I was on their side.