Well, here we are again, forever and a day since I posted last. I am not much of a reader or a writer and just never feel I have anything witty or wise to sjare so I just don’t get on here and post. That is unless I feel something noteworthy has happen. So guess what…something noteworthy has happen. Now mind you for most folks it is nothing earth shattering by any means but in my world it’s pretty big news.
Today after work Tricia and I took dinner to Stacy and her two boys. Like I said, most of you may not find this as very big news, but to us it was. See Stacy is Brianna’s mom and Brianna is a 9 year old girl with GBS and is currently in the hospital. She has been fiting with GBS since Feb 9th. She has been in the hospital most of the time since then and her family is fighting through it all. Shawn is her dad and he has been up at the hospital with her since the start, there were even nights he slept on the hospital floor just to be there for his little girl. There are nights when Shawn would go home and Stacy would stay and for anyone that has tried to live in a hospital when you’re not the one being cared for it ain’t easy. It was the least we could do for a family that is going through all that they are to take them a simple dinner and let them know we are here to help anyway we can. Shawn has work, Stacy has school and then they have 2 boys at home that need love and attention and that is a lot to juggle even if you didn’t have a sick little girl in the hospital.
I think what bothers me the most is the lack of information out there. For the first month in a half they had no clue what was truely going on. Brianna is set to come home on Wed (and I hope to meet her soon after that)
and this is going to add a whole new level of challenges to life. Brianna will be returning to school part time and she will have out patient physical therapy 4 days a week to help her learn to walk again among many other things. Life with GBS is not easy for anyone involved. The family will learn how to help her when she is at home and how to do things without the aid of the hospilat staff. It’s no fun at all but after meeting Stacy I’m sure they can do it and we plan to help when we can.
The part I find so frustrating here is the difficulty to get connected with new GBS patients. I just happen upon here story from a post a saw on Facebook. I have been trying for 4 years now to find someone local that I could meet and share with and this is the first. Now I will admit I have not done much to get out there and find me some GBS folks but there is only so much you can do now days. It is just so frustrating at times. Please pop over and read her story and share it with others. The more that hear and learn the better it might be for the next family hit with this syndrom. Https://www.facebook.com/BriannaRameyGBS
Please keep Brianna and her family in your prayers. While your add it please include me and the various issues I face with GBS and my aorta. And lastly please include my mom. She must undergo a mitral valve replacement and soon.
Thank you for reading…
Saved ny the blood,