Just a big unique crazy family consisting of twenty individuals and three dogs! It's a day by day kinda BIG!
Sunday, December 18, 2016
"Snowed in"
I'm not sure where it went but we persevered through another year. It feels like two years of our life vanished while pressing through day by day. It's like this snow we're getting. We can go places minimally and sometimes we are just snowed in. From one day to the next we don't know. It's become acceptable to a degree. We have been told that some of us are more likely suffering from PTSD (Post traumatic stress disorder) I won't get into details but it completely makes sense. I remember being told by a physician that it's very common and especially for the family members witnessing. Then if the medical aftermath continues (like ours has) every day becomes worrisome. We are always in flight against high winds for survival. I often fear that our children will only remember the illness and not what we once were or what we still continue to try to be. Christmas 2016 we have no outside lights up. We decorated less. Summer 2016 we couldn't camp. Of course we made the best of what our life is and we continue to do so but for us, it's only 50%. We aren't in celebration mode for 2017. Our fight forward continues. For the past year and a half we were advised not to speak or share anymore of what happened because we were seeking a legal law suit. To date, after investigations, interviews and reports our lawyer has told us we have no case unless we can find a specialist to state that if Gerald received the appropriate care within that emergency time frame (because it was proven there was a breech of care) would have it made a difference? So far no specialist can provide this. A year ago we were going to go to the news. They were very interested in our story however we halted due to the fact it could be detrimental to our case. Now closing 2016, moving into 2017 Gerald continues to have more medical complications then last Christmas and not one apology for sending us away not once but four times from emergency departments being septic. Three weeks in ICU. Three months hospitalisation. Operations. Septic again once discharged. IV meds up until Christmas of 2015. Now damaged with serious ongoing medical issues where we are told, "We don't know" "We have never heard of this before" "You will have to be referred on" Then while we wait, referral after referral with no medical support we wonder if he will awake with his two feet on the ground every day and we should remain quiet. Press on. Be hopeful, and be positive. We are. That's the thing.....we are and we are very patient without expressing what it's really like day to day. Anyhow it's just a cheated feeling and with all the unknowns we feel it's terminal with no positive answers. Only if he had the proper rehabilitation and a pain medication that would enhance his quality of life at least. Christmas is six days away. We are completely prepared however it doesn't feel the same. Gerald has been so sick for three weeks and counting, while adding his frustration, it's hard to be joyful. Christmas holidays..?..we would have loved to go up to Mt. Washington but like camping, it's to hard physically. That leaves us breaking up as a family and frankly, I'm tired of leaving the sick behind. The weirdest part for me is seeing men my husband's age and older healthy. I often get glanced at because I think I'm caught watching these guys walk, and physically able to do anything....like run. It puts me back into perspective on how much damage has been done. Then it just resurfaces on how pissed off I really am on how we were treated with no justice. I know....I have to find peace with this however hard when I'm reminded daily with a compromised husband. A father that can't ride a bike with his kids. Daily frustrations due to chronic pain and physical complications. A different family then we once were. So this is why I haven't been able to write as I once did. Well......yet another block - writing. I honestly feel like a three year old wanting to have a tantrum sometimes. During our last appointment I was so excited because we were seeing a internist/cardiologist and I thought for sure (after months of waiting) that he would have the answers. He referred us on. Without swearing up a storm, we left just as fucked up as we were back in 2015 when he was septic. Now we wait. Again. Whew! I'm glad I wrote all of that off of my chest and hopefully it was understood properly due to the fact there's not much sleep happening around here. So normally during this time "on my blog" I post a reflection of the previous year. I think this post gives an appropriate reflection adding that we made it another year with several fun and positive opportunities given our health challenges. Now in a matter of days or it's even over by now, "It's Christmas" I truly hope every one enjoys or enjoyed their family and friends during this magical time of year. Even through loss and challenges, embrace who's around you. Concluding, we don't know what tomorrow brings. None of us do. It's so important to be real with each other, even if it's me writing like this. Foremost as I have always written, love, accept and try not to judge. And if you can, give.
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