Living with SED 2


This is part II of my ongoing series – Living with SED. To see what came before – see Part I.


We seemed to sail through the first two years the boys lived with us – things weren’t bad, but they really weren’t all that good either. I grew resentful, and tired.
Let me explain a little about that first, so you don’t go thinking I’m just one of those moms…
In 2005 my other half injured his back, at the time we lived in North Carolina. I was offered a job in Georgia in July, and we moved here at that time. Once we relocated, I worked about 60 hours a week during tax season from December until April. After a year or two I moved up, took a salary position, and worked 60-80 hours a week, all year long. Through all of this, Shawn was in so much pain and on so many pain killers that it was hard for him to do  much. He was able to prepare light meals, do some laundry, and help with homework and stuff, but that was about it – the bulk of everything was on my shoulders.
The year after the boys came to live with us, Shawn was admitted to Miami Jewish Hospital’s Rosomoff Pain Clinic. This was after two surgeries – the first a simple discectomy, the second a more radical full fusion from S1 to L4. Neither of them worked and we were looking at a 95% disability rating. Until his insurance company decided to try Rosomoff… and sent him down there for a month. During that month I did it all – laundry, dishes, cooking, cleaning, getting kids up and ready, weekend stuff, everything fell to me. Of course I had a sitter, and worked fewer hours at work, and more at home. But it wasn’t easy, and again my best friend, bless her heart, saved my butt more than once.
They flew me to Miami to attend his “graduation” from the therapy program, and we flew home together at the end of his stay. It was summer break and we were doing OK… but I was exhausted.


Things moved along and the summer turned to fall, the kids returned to school. Fall turned to winter and Christmas. It was during this time that I was gripped with an unshakable bout of pneumonia. I was deathly sick and in bed until almost April. I worked about six hours a day during the entire illness. At one point, the doctor threatened to hospitalize me to keep me from working. During all this time, I was also trying very hard to maintain the house, while my dear other half, who had been bedridden up to this time, continued to stay by my side. Let me repeat – I was in bed, and he was by my side. Continuously. He didn’t do laundry, cook, or clean except minimally. I was still trying to put in a full 40 at work and do the minimum to keep the family going on my own. Now, to give him credit so you don’t all think I’m insane… He tried, he really, really tried. But when he got home from the hospital, I pretty much stopped doing most things. I left him with the chore of laundry, and didn’t give him firm ideas of how it was done – so when a size L ladies sweater turned into a 2T sweater because he dried it instead of blocking it – I would lose it. Not that it was his fault, but that it happened to begin with. I loved that sweater! But the little things added up to big things, and because I was so sick, and on so many medications, my mental facilities were not what the normally are – and I became resentful.
When I got back on my feet – minimally, I returned to the workplace, leaving him with EVERYTHING to do at  home, because by the time I got home, I was exhausted from trying to work sick. It was unfair to him, and the children, but I wasn’t thinking clearly – months of mass doses of steroids will do that to a person.
So, in February I decided to strike out on my own. For 5 miserable months we lived in separate houses. In March, Daniel had a mass meltdown at school. He threw himself away… literally, and they could not retrieve him from the garbage can. He just wouldn’t let go and get out. By law, they were required to report this to the Crisis Intervention Team at his doctors office. Daniel was swept away in an ambulance and taken to the hospital for evaluation. The doctors did the evaluation, and decided he needed to be hospitalized for stabilization… I felt guilty… very, very guilty. So much so that I tried calling him every day – and every day he hung up on me saying I didn’t want him. I cried myself to sleep at night as I realized that my decision to be “stress free” had caused this child so much heartache and pain.
By May I had realized the errors of my ways, and that I was truly, madly, deeply in love with their dad… and I didn’t WANT to live without them in my life. So I began the process of repairing our relationship.
Daniels hospitalization didn’t last long, and he was returned to his dad, a Zombie… by an orderly – without any medical advise from the staff of the facility… just – here’s your son… have a nice life. It was then that we understood the lack of appropriate care for our child, and we began to take steps to help him.


This is part II of an on going series about Living with SED – stay tuned for part III.

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