Daily Dose of Sultnpapper 08/13/18> I remember it like it was yesterday…08/13/04.
Friday August 13th...
There are certain dates and times in a person’s life that just never fade away and are recalled with exact detail. One week prior to 08/13/04 we were celebrating the birth of our new baby girl that ya’ll know from the daily dose as Blondie. The celebration was being over shadowed by what would take place on Friday the 13th of August in 2004.
At 9:33 PM on August 13,2004 Blondie’s grandmother and Mrs. Papper’s mother passed away after some serious complications from blood clots that were in her legs and had moved into her lungs. She had been hospitalized for about 10 days and so while we had a new baby to celebrate, we also had a death staring us in the face at the same time.
Ehlers--Danlos...
We would later come to find out that “Mammaw”, as she was called, had been the first of the wife’s side of the family to have a disease that is known as Ehlers Danlos syndrome. There are several variations of EDS, one of which has to do with the vascular system of the body. One thing that doctors have come to realize that wasn’t known at the time was that for some reason a lot of medicines that EDS patients will end up taking have exactly the opposite effect as those medicines would have on people without EDS.
Medicine doesn't work like normal...
This would be the exact case with Mammaw, the blood thinners that she was being given actually were causing blood clots throughout her body, sounds crazy but it is what happened. Mammaw was in her early seventies and another abnormality she had was her heart was backwards in her chest, her cardiologist said he had only seen that condition in one other patient besides her, so I’m thinking that is a pretty rare occurrence. Since she was in her seventies, and not in the best health to begin with there wasn’t any heroic last ditch experimental stuff that would be tried or even asked to be tried. She had led a pretty full life and it was her time to pass on to the other side.
It was time...
The decision to move her from the hospital back to her home was made the evening before, so a hospital bed and hospice could be arranged before she was moved back home. Everything was in place by 10:00 AM that Friday morning and the ambulance took her from the hospital back to her place in the country. By 11:30 that morning she was resting at home, heavily sedated and unconscious. She did have a peaceful look about her, but who knows what was really going on in her mind if anything. The hours dragged on but at 9:33 PM she took her last breath, and by midnight her body was on the way to the funeral home. The sheriff had to come “investigate” the death.
Credit is due...
I have to give it to my wife, despite having just giving birth a week earlier and the emotions of that experience she was the only blood relative of Mammaw that actually could hold herself together. When it came time to make the arrangements with the funeral home she had to do it all, it was just to “stressful” for her older sister and brother to deal with and her father was a total wreck as well.
My wife’s father never dreamed he would outlive Mammaw and he had spent the last fifty plus years of his life with her waiting on him hand and foot so he really was in a state of shock.
Early morning coffee...
A lot of men don’t really care much for their “mother in laws” but I have to say that Mammaw and I got along pretty well for the most part. She always was an early riser and so a lot of times I would stop by early for a cup of coffee in the mornings and just visit with her. She was always up to speed with what was taking place in the community so I was able to stay well informed.
Short changed for sure...
I wish that she had been with us longer so she could have met Blondie and then Shortie. Mammaw did a real good job of spoiling her other grand kids and that is something that our girls never got to experience, the boys got a little taste of it, but neither of the girls did.
It is a genetic thing...
There has been a lot more research done in the Ehlers- Danlos Syndrome but it is still relatively unknown to most people and even some doctors. I might say that we have our hands full with it since the wife, the two girls, and the youngest boy all have the EDS. We also see signs of it in some of the nieces and nephews and their parent, but not to the severity that my kids and wife have so, “it is all in our heads” according to them. Someday I need to do a daily dose just on EDS, I need to make a note of that.
So here we are...
So each August 13th is a sad day around here as we remember the Mammaw and try and pass on some of the good memories of her to the girls. I thank you for reading this daily dose, this one is surely intended for my “future” readers and so it needed to have its place in the block chain.
Have a great day and enjoy the last of summer before school starts.
Until next time,
@sultnpapper
Congratulations! This post has been chosen as one of the daily Whistle Stops for The STEEM Engine!
You can see your post's place along the track here: The Daily Whistle Stops, Issue 227 (8/15/18)
The STEEM Engine is an initiative dedicated to promoting meaningful engagement across Steemit. Find out more about us and join us today.
The pain of loss remain is never erased by time. We hope it is, but my experience says otherwise. My thoughts and prayers are with you as you remember someone worth remembering.
Thanks Nate, I agree that time never does erase it. Thanks for the thoughts and prayers. Your kind words are very much appreciated.
i have never heard of that ailment. May the future find it cured! May memories of Mammah nourish your day.
Thanks friend. We are involved with a research program at Baylor College of Medicine that is studying the disease and working to identify what causes it. They are looking at the DNA of several families that have folks with it trying to determine a commonality among them. Once they can establish that then they can look at the finding a cause and hopefully a cure in the future.
Thoughts with you and the family the memory of those we have lost comes down strong on us often
Thanks Jay, it sure does come down strong. Especially when it is so close to both the girls birthdays, Shortie's birthday is on Thursday this week and Blondie's was last Monday.
@sultnpapper IT must be such an emotional roller coaster fo you all
Ahhhh, my friend. I get it, I have a couple of those 'sad days' on my calendar every year. One in particular that I take mostly off and just wallow in it.
Not really much for me to say except to clink coffee cups with you and raise mine in respect for your MIL. May she rest in peace.
Thanks Tom, I have the coffee cup in hand this morning. Salute to Mammaw. Thanks for understanding and the kind words.
So sorry for your loss, especially the girls' loss, @sultnpapper. By keeping her memories alive, you giving the girls a glimpse of who she was and what she meant to the family. You never forget them and the hole they leave in your life is always there.
Thanks Ceci. That's all we can do is keep the memories alive and pass them on. She was a good lady and it is a big hole she left. Appreciate you very much.
I've never heard of EDS, must be quite a concern for your family to have it! It's strange that the blood thinning meds does the opposite! I look forward to reading more about it Mr Papper.
Dates like these are always sad, thinking of you and your family!
It is quite concerning for sure, in the kids right now the primary issue is bones that go in and out of place for no reason at all. Well, there is a reason, they have EDS, one of the many complications is that their muscle tissue doesn't stick to their bones and so there really isn't a lot of support around the joints.
There are some days that you could never tell there is anything wrong with them and there are other days when Shortie needs a cane just to be able to walk to the bathroom because her knees and ankles give out so much.
Braces do help some but they are just very uncomfortable to say the least.
When Shortie describes her condition to people she says,"you know how you have glue that holds your muscle's to your bones, right, well the glue I got when I was born was defective."
I wish I could get my wife to write about it, she has it and deals with it first hand and she also has to help the kids learn to deal with it. I am going to work on her to write it and I'll throw my two cents worth on top of it.
There are people who have it that literally cannot get out of bed and that are on feeding tubes, it can be that severe.
We can only hope that the Baylor College of Medicine study that is currently ongoing will help shed some light on it and as a family we are all involved in that study except Blondie, she refused to have her blood drawn that day for anything.
Gosh mr Papper, so it can be a real debilitating condition, Shorty's description is very good!
I checked now and saw there's an EDS Society as well.
Really hope your family do not have severe complications as a result; would be good to hear about this condition from mrs Papper's point of view!
There certainly is an EDS Society and it is a good source of information. It seems like it is a progressive type of condition that gets worse over time. My wife had the same symptoms as a child as the kids do but back when she was a kid people would always accuse her of "faking" that she was ill to get out of doing stuff and going to school.
Her pediatrician and then family doctors new something was wrong but could never put a handle on it. It has a long history dating way back but because it affected so few people it was not widely know and not heavily pursued in terms of research. Things have changed and there is more and more research being done but no cure has been discovered so it mainly revolves right now on symptom / pain management .
I gave seen with my own eyes though that it is getting progressively worse with my wife in the 26 years since we met. So when she says the the kids are going through the exact same things that she did as a child that is scary on what they have to look forward too unless something changes.
That must be a huge concern for both of you, especially Mrs Papper as she knows exactly what it feeks like! Gosh, and then I complain about a little hayfever!
It surely is.
Now, that is a tough situation, indeed, with a birth and a death coming almost at the same time.😕
Your talking about EDS also reminds me of a story I need to write about — a condition that my father had, which caused his blindness, decreased kidney function, and other problems. I think by writing about these rare conditions, we can help other people whose doctors might have difficulty diagnosing them.
The more people are aware of things the better off everyone is, especially rare conditions, so you should surely write about it.
That was definitely a rough time for us and continues to be each year, it is decreasing I'll admit but it is so close that it isn't as joyful as most birthdays could be and especially since Shortie's birthday is the 16th of August.
That's a very sad story, though good that she passed peacefully and with her family around her. I've never heard of EDS. And I've never heard of a heart being round the wrong way. She must have been a strong woman to get through life with those ailments.
She was one tough cookie and raised up on the farm so she knew about working in the fields and taking care of the animals. She never was diagnosed with EDS, but she had several of the symptoms, my wife and kids have been diagnosed and are part of an ongoing study at the Baylor College of Medicine. There is no question in our minds though when you look at the extended families and who has symptoms and who doesn't that it came from her side of the family, none of my wife's aunts or uncles or cousins from her dad's side of the family have any signs of it.
Goodness. It must be very worrying for you, but it's great that they are helping with research into the condition.
It is because we never really know what to expect or when things may start turning downward. We stand to gain from any research so why not be a part of it is our thinking on that.