Government Cheese. Part One
Please note: I wrote this about a month ago, and am finally comfortable sharing it. As beautiful as our children are, parenthood has been more difficult, more complicated than I ever expected.
I am most humbled this week as I apply for government assistance for the first time in my life. I pay my taxes. I work. I've paid my dues and what do I have to show for my efforts? Government cheese. This is a long story and may take me several days to explain, so please bear with me...
Once upon a time a nice young professional couple decided to have a child. They were blessed with one of the smarted, most angelic, and most humorous child a couple could ask for, but it came at a price...
For those of you who don't know, Jackson, my son, was born with evidence of a cerebral vascular incident. A stroke likely occurred during the third trimester of our pregnancy and completely occluded the posterior branch of his right middle cerebral artery. Please note the distribution on the following image. This amounted to nearly 10-15% of Jackson's brain. Not a small chunk.
We did not know this for some time. Jackson made it to nearly a year before we started wondering why he was left hand dominant already. This is developmentally unusual, but not totally obvious. In the retro spectrometer, I feel like we should have known. I am observant. I am a physician. I am a father. I missed it completely, but looking at old pictures he had the left hand contracture, torticollis, and possible facial droop that should have tipped me off.
Truth be told, even our own pediatrician didn't really catch on, as Jackson is a wonderfully interactive and bright child (he takes after his father) and compensates incredibly well. The past year or so has been filled with doctor’s appointments, cardiologists, ophthalmologists, pediatric intensivists, a neurologist, physical therapy and occupational therapy. We (I use the royal sense, but truthfully it has been Jana more than I) have taken Jackson to therapy up to five times a week over the past year, and have been fortunate to have been reasonably well insured, to a point.
Not to draw pity or attention to our financial status, but I feel it is pertinent in telling the story. Just to break down our financial situation...I am a medical resident. If I were paid hourly, I'd be better off picking apples. This is part of my training and I am not upset with what I earn. Many people earn far less than I. Jana is a pharmacist, but due to our impending delivery (twins, yes, twins) her abdominal girth has made it difficult for her to continue working the part time job she held at the hospital. We have been fortunate that throughout all of our adult/married lives, one of us has had a job while the other was in school/training. This has allowed us to be less than frugal at times, particularly prior to the birth of our son Jackson. We have always paid our bills, I paid off my initial (undergrad) set of student loans, and Jana has paid off her undergrad and graduate student loans as well.
The complicating factor has been Jackson. We are happy that I have a job which provides insurance, but amazingly, despite the fact that I work for a hospital (and a Catholic mission hospital at that), we have fairly mediocre insurance. Again, not to complain, we are thankful for what we have. Jackson's medical condition, however, has required significant resources and his physical and occupation therapy was covered for much of the past year until we met the end of our benefit. What did that mean to us? We have had to assume full responsibility of his therapy bills. Now, we have cut down on the frequency, but to give you an idea, if we continued at the initial number of sessions per week (usually about 4) our monthly PT/OT bills alone would be in excess of $3200. More than my salary, more than our mortgage, more than our allegedly financially secure positions in life (I'm a physician for Pete's sake) could handle.
We are truly blessed with family who has helped us, and with some creative financing, deferments, belt tightening, etc, we are doing okay. The twins have pushed us into an entirely different realm, however, and now we qualify for Denali Kid Care (the state Medicaid program which covers pregnant women and children) as well as WIC, the program for Women Infants and Children, which insures that this demographic has adequate nutrition.
Thus bringing us to government cheese…
Once upon a time a nice young professional couple decided to have a child. They were blessed with one of the smarted, most angelic, and most humorous child a couple could ask for, but it came at a price...
For those of you who don't know, Jackson, my son, was born with evidence of a cerebral vascular incident. A stroke likely occurred during the third trimester of our pregnancy and completely occluded the posterior branch of his right middle cerebral artery. Please note the distribution on the following image. This amounted to nearly 10-15% of Jackson's brain. Not a small chunk.
We did not know this for some time. Jackson made it to nearly a year before we started wondering why he was left hand dominant already. This is developmentally unusual, but not totally obvious. In the retro spectrometer, I feel like we should have known. I am observant. I am a physician. I am a father. I missed it completely, but looking at old pictures he had the left hand contracture, torticollis, and possible facial droop that should have tipped me off.
Truth be told, even our own pediatrician didn't really catch on, as Jackson is a wonderfully interactive and bright child (he takes after his father) and compensates incredibly well. The past year or so has been filled with doctor’s appointments, cardiologists, ophthalmologists, pediatric intensivists, a neurologist, physical therapy and occupational therapy. We (I use the royal sense, but truthfully it has been Jana more than I) have taken Jackson to therapy up to five times a week over the past year, and have been fortunate to have been reasonably well insured, to a point.
Not to draw pity or attention to our financial status, but I feel it is pertinent in telling the story. Just to break down our financial situation...I am a medical resident. If I were paid hourly, I'd be better off picking apples. This is part of my training and I am not upset with what I earn. Many people earn far less than I. Jana is a pharmacist, but due to our impending delivery (twins, yes, twins) her abdominal girth has made it difficult for her to continue working the part time job she held at the hospital. We have been fortunate that throughout all of our adult/married lives, one of us has had a job while the other was in school/training. This has allowed us to be less than frugal at times, particularly prior to the birth of our son Jackson. We have always paid our bills, I paid off my initial (undergrad) set of student loans, and Jana has paid off her undergrad and graduate student loans as well.
The complicating factor has been Jackson. We are happy that I have a job which provides insurance, but amazingly, despite the fact that I work for a hospital (and a Catholic mission hospital at that), we have fairly mediocre insurance. Again, not to complain, we are thankful for what we have. Jackson's medical condition, however, has required significant resources and his physical and occupation therapy was covered for much of the past year until we met the end of our benefit. What did that mean to us? We have had to assume full responsibility of his therapy bills. Now, we have cut down on the frequency, but to give you an idea, if we continued at the initial number of sessions per week (usually about 4) our monthly PT/OT bills alone would be in excess of $3200. More than my salary, more than our mortgage, more than our allegedly financially secure positions in life (I'm a physician for Pete's sake) could handle.
We are truly blessed with family who has helped us, and with some creative financing, deferments, belt tightening, etc, we are doing okay. The twins have pushed us into an entirely different realm, however, and now we qualify for Denali Kid Care (the state Medicaid program which covers pregnant women and children) as well as WIC, the program for Women Infants and Children, which insures that this demographic has adequate nutrition.
Thus bringing us to government cheese…
posted by rob at 12:13 AM
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