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Enigma


The young boy enters the burn clinic with some apprehension. He is here again to have his bandages removed from his latest surgery. Walking over to the table he jumps up and begins removing his own bandages. As I put on the gloves and assist, very little since he is doing it mostly alone, with the removal. The nurse soon walks in with the Physicians Asst who was present for his last surgery. The nurse begins cleaning his open wound covered with integra. There seems to be more “stuff” to clean this time as it is almost completely healed, but I am assured it is not infection, but rather just some discharge that is normal. We discuss his visit in a few more days for the same thing to see if we can skip that visit and I can clean and re-wrap the wound from home. The 5 hours of driving is wearing but I would gladly do it again if needed. The issue is his Dad wants to work that day and not drive us. I can drive us too if needed, I just try to avoid it in the last few years on roads that have massive traffic and travel at 70-80 mph. I get high levels of anxiety as I grow older driving in those conditions. The staff agrees I can do the job from home and makes sure I have everything I need, including a pair of new scissors to cut the foam covering the opening. His surgery will be next week on Wednesday, and he will have large donor sites of skin taken to cover this opening in his abdomen and right side. His Dad asks about the staples that have always been used for these surgeries in the past. They have caused a great deal of pain when they are removed to Christopher. The nurse tells us they now use a new product that is like a glue to adhere the new skin, so no new staples will be applied. The staples in now that have held the new integra in place will be removed during surgery. All really good news for us and Christopher!

As the nurse is cleaning the wound with a long q-tip she gets too far down in the opening and Chris protests at the pain. I react immediately but the nurse has already stopped. I don’t now how to stop being the tiger circling and protecting my young. I still feel his pain long after his has subsided. I am so connected to him that I am often on this high alert status and have never really been able to stop feeling that way. Not since his accident. I don’t remember how it felt to be “normal”, since this has been my new normal for 13 years now. I recognize it as over reactive, even annoying at times to others. I just don’t know how to stop doing it. It has its rewards in a sense I suppose. Hospital staff and others are very careful after dealing with me. They will not upset him or hurt him without there being some kind of fallout. I am truly trying to let him speak out for himself now. I encourage him to communicate and tell the medical staff what he feels and ask questions for himself. But all the while if he cries out I jump. If he complains I handle it. If someone doesn’t talk to him kindly I speak up. I have been his advocate for so many years when so many have ignored him or talked down to him or been unkind that I just may always be this way.

An advocate is necessary for all patients wherever they are. Consider if instead of just visiting someone in the hospital or a facility we all became a little bit involved, even if our role isn’t immediate relative or spouse. How much better could their care be, how much more attention and kindness could we eek out of professionals? Could we sit by for just one more hour and talk with their immediate family to find a few suggestions that might help, or offer to bring something that might make a tiny difference in their day? I’ve been to the hospital to visit my Grandpa years ago, when he was sitting in a recliner next to his hospital bed with a portable oxygen tank connected via nasal cannula. And I found that the tank was empty. I was an EMT for 10 years so I know a bit about that. I another time visited him in an ICU where he was connected to oxygen and my Mother started to put Vicks under his nose, and I stopped her. That is very dangerous for someone on oxygen. These little things that we can all do for our loved ones that can make a difference. Just by being there. Paying attention. Caring. And being an advocate.

As we go on through Christopher’s journey I hope to teach him increasingly to be his own advocate. That doesn’t mean I won’t be, it just will teach him to be too. That is one of the greatest lessons he will learn as a burn survivor. And one day, if he is called upon to advocate for another, he will be great at it.

Sometimes the people we cant imagine doing things do things we cant imagine. Be that person…….be an enigma.

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The Bridge


I was, just a few days ago, mentally standing in the grass. It was lush and green and just long enough to wonder if anyone was responsible for it being mowed. I faced a bridge that I could imagine as I wished, for the entire picture in my mind was for me to imagine after all, wasn’t it. So the bridge was brown with posts and a handrail on each side. Not because the water was deep, it wasn’t. It actually ran over a babbling brook with a clear stream running over rocks. Quite beautiful really. The bridge arched in the middle gradually going up then back down again before reaching the other side. Yet here I stood. Not moving forward and not retreating. No other person or living thing was in my view. But I did have a clear impression that to the left side of me were a few large green trees with smooth rocks at the base. I felt quite comfortable where I was. I didn’t feel a need or an urgency to proceed. So there I stood, alone, looking at my bridge.

I prefer my own comfort zone. I tend not to move out of it unless I am shoved, hard, from behind. While standing at my bridge, just such a shove occurred just as it would if someone were standing behind me and decided to push me with all their might. My shove happened in the from of a group text. It went like this: I have some bad news regarding Jimmy which I just found out, today: 1. Renal failure 2. Exploratory surgery 3. Mass in bladder……..and so on. Jimmy is my oldest of three brothers. Not one of my favorites growing up, if I am to be honest. But in years since I have been first the brunt of his anger, when he hit me in the face while serving in the Army, because one of my comments upset him. Then he grew up and married, had 2 sons and was usually quite easy to get along with. Although I didn’t see him often, there were no more unpleasant interactions after he was in the service. In fact a few times he was there for me to confide in at a moments notice. All these things come back to me over the past few days as I wonder if he will live through this. And if so, for what quality of life he can expect from here on in.

What was the shove you wonder? Well we all have a choice when such a message is given to us. Act in word, don’t act (which is an action), or act in action. There is a big difference to me. We often hear “prayers” or “thinking of you”. That is acting in word. Action means to become involved though doesn’t it? Visit my brother in Indianapolis, talk with his wife, go further and be tested in case a kidney donation is needed. See the difference? The shove I felt was because I did not immediately consider not acting or acting only in word. I have pondered those options since then. My son, who is the subject of my beginning this blog, requires a bandage change in Indianapolis from his surgery August 6th to apply integra to an open area on his mid area going around to his back on the right side. I have the perfect opportunity to check in at the hospital my brother is at. Part of me wants to stay in my comfort zone. And not cross the bridge to what is on the other side. Heartache, confronting what is happening, offering part of myself that is now on a thin thread with my sons surgeries, the next coming up on August 28th.

Were I laying there would Jim come to be by me? I want to think yes. If I wanted him there when Chris went through all his surgeries and appointments would he be there? I say yes, because he did go to Indy while Chris was in a coma. He did stay with me a few days. He did try to be my brother in action. So while it brings me to tears to confront it….I’ll cross the bridge. I haven’t thought before what it took out of him to go to Indy all those years ago and be strong for me. I don’t think I showed proper appreciation. I am always so caught in my own survival to get through what I am getting through. When someone shows up and give you themself without asking for anything in return how easy is it forget they were there and keep moving on? To forget to be thankful and feel the blessing.

So Jimmy, my brother, I as your sister am coming to you. Hold on and be all you can be for now. Leave the worry and prayers, the decisions and aid to others for now. Heal your body and respond to medical treatment and all that is around you. Because if you weren’t appreciated enough before you are now. Because I can cross the bridge for you. Because you are loved and deserve it. Blessed Be

Here we go again


I have compared the pictures of people from years ago to today. When I viewed it as a slideshow it became increasingly clear to me that we all have to have a story. We all have to progress through the story, and age and change as we do. If our bodies and minds were forever the same our stories wouldn’t change much. And the natural progression through what we call life has to happen. We can’t be forever in the same part of our story or there would never be a new story to tell. There must be room for more stories. This thing we choose to call life? Its a story we tell.

My story for the past many years, 13 to be exact, has revolved around another story. If I tell my story the other story has a stronger foundation, more details and weight behind it. There will come a day, I am sure, when the other story will be told from his standpoint. And it will be a new story based on the foundation of his story that I have lived.

This Tuesday August 20, 2019, it weighs heavily on my mind that yet another surgery is pending for the 28th of this month. My mind wanders back to the countless surgeries and heartbreaking moments that brought me here. I wonder had he not survived what would my life have been like? For we are inexplicably intertwined in the deepest and most profound way. Was I selfish to pull so hard for him to live? Did I do right by him? Where will he be when I die? Because one fight will lead to another. From focusing so completely on him to walk, to run, to live as normally as possible I have had to acknowledge that his story has proceeded to the point of puberty. Where more needs are presented and must be met. The ability for him to stand straight and walk normally I fought so hard for is again an issue as he has grown into a beautiful and loving teenager. That fight was for then, the same fight is reintroduced for now. His high school years are just beginning, and his are as a home schooled teen. There are challenges to meet to succeed. And succeed is the only option to me, to help him live the best life possible. There is the fear of him starting to drive over the next year. An added challenge being his hearing loss of 50%.

Priorities rule alot of my decisions. Today only what will benefit him the most? Schooling. Yesterday? Driving for 5 hours to a dr appt in Indianapolis, then schooling at home. His story is achieving and accomplishing things that very few humans in our world will ever be challenged with. How do I keep his spirits up, when can we afford to break and enjoy a movie or a meal out? How do I show him that people care about him and how hard he struggles? These are all my thoughts and part of my story. And I will write them down so he has a foundation to build on. So one day he can read and understand. So he remembers some of what we went through. And mostly so he will always know that to go on and be whole and happy was my only goal.

His surgery August 28th will be to graft over the integra that took very well from his Aug 6th surgery. He will have large areas of donor sites and he will need weeks to heal, then months to feel well. Then to proceed to another area. I have checked and rewrapped his bandages here the last few weeks. I have monitored his pain and overseen his physical therapy at home. I had fundraisers so I can be with him all day and available for his twice weekly Indy appts. And I enrolled him in home schooling for 9th grade so he doesnt miss out on all his credits this semester. I have arranged for him to go out for dinner and to a movie, to have family visit and to spend time doing normal things aside of a hospital and school. I feel it has been successful so far and I fervently pray we can get through all these surgeries and challenges together as we have so many times before.

But while I reached out I didn’t do this alone. The response of our community to help him by donating, the couple of cards he received with encouraging notes to him, the sharing of his story that everyone else took part in has become a part of my story. I am not alone. I am lifted up and as such so is he. I am floating on a cloud of good intentions and best wishes. If I peek over the edge I might fall. But faith keeps me from doing so. My Hearts Hope sustains me and keeps me going and I do not look for a way out or around it. Because this is my story. And how my story ends will be the middle of his story.

The Days Before


Avon

Friday we received our call from Riley Hospital for the surgery details. Over the weekend sleep was very hard to come by. Last night I went between almost falling asleep to being awake and not being able to turn my mind off. At one point I hid behind a door and tossed objects at Chris who was playing on his laptop. It was about 12:30 am. He thought I was sleeping and couldn’t see me hidden behind a door, so eventually he got freaked out. He picked up a curtain rod and headed towards where I was hiding. Before he reached me I couldn’t help it I started cracking up. He responded with, “Oh my God Mom!!” Well it was good for a laugh anyway.

I haven’t cleaned the bathrooms or the bedroom he will use yet so that leaves it for today, the last day we have before this…

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www.facebook.com/371591633477893/posts/390271131609943


I am deeply touched by the outpouring of love from so many people who have known me in my high school years, and who have never met me or my son. Somewhere deep inside they care for others who have never before touched their lives. They aren’t just compelled to type in the word “prayers” and click the send button. I am talking about the ones who will take out 10 minutes of their day to share a story to as many people as they can. They will donate whether its $500 or $20. They will offer a kindness card to be sent to the child having surgery. They give something of themself to share and help someone else. http://www.avon.com/fundraiser/christopher

Those are the people who aren’t just touched by a story. They want to touch the people IN the story. They want to give back the compassion and caring it took to write the story and be vulnerable enough to put it out there in the public eye.

Christopher didn’t ask for his life to change on August 6, 2006. He didn’t ask for the shunning and bullying he has endured. The loss of hearing and excruciating pain he has endured. He hasn’t asked for no friends in his life, or difficulty learning because he has so much else to deal with. And he didn’t ask for his community or family to support him while he deals with all of it. No, he never asked for anything. I am. I am his advocate, his Mother, his protector, his support and driver and decision maker and teacher. I am asking, for his benefit, for every single person to reach out to HIM. To share with him a small token of caring and supporthttps://www.facebook.com/donate/207079590196404/?fundraiser_source=external_url

.

I usually do it all alone. Sometimes it takes a village to raise a child. I’m asking for our village to help with this child so I can be there for him. So our loss of income for a couple of months doesn’t over ride what it will take out of me to do that. I need that stress to be removed before his surgery and focus on him. Can you help me do that? Will you help me help my son? Please donate what you can. And know we never forget and always appreciate every single one of you. Blessed Be


Avon

https://www.facebook.com/donate/207079590196404/?fundraiser_source=external_url

This child now requires extensive surgeries as he grows in his teen years. He will require 3 phases, beginning with a 2-3 month regrafting and restructuring of his chest and abdominal wall. Please find it in your heart to donate, no matter the amount, and very importantlly share with as many famiy and friends as you are able to. Make a difference. Thank you for your support from Christopher and his family. Blessed Be

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