A husband wants to be strong for his family. My husband wears the role of "provider" like a cloak. He feels the need to provide, and feels unworthy when he feels he is not hitting the mark. My husband is an amazing provider. At the moment he is blind to this. At this moment he looks at his cloak and sees a dull, dirty, brown cloak. Not the bright, colorful cloak that he wishes to display. Much like a male Peacock, displaying his feathers, showing that he will make an amazing mate, Joe is an amazing mate. He is a terrific father. He is my everything. He is in a dark, shadowy place at the moment, that doesn't allow the sun to shine on that bright cloak. Instead, he sees brown, plain, and dull. He needs some sunshine.
We followed all of the instructions that have been given to us, step by step, to get to the end result of my having the BCIR surgery. We knew that I would not be able to live forever with a bag adhered to me, when I am allergic to the adhesives, and am an active individual. In December I had my ileostomy surgery, as requested by the BCIR team, prior to my BCIR surgery. I spent 9 days in the hospital, and arrived home on December 23rd. Now it is just a matter of waiting 6 months, and then I would finally be able to have my final surgery. My dreams of being pain-free and device free were in reach.
December 25th was Christmas. December 26th was Joe's 45th Birthday. Happy family moments, even if I was in discomfort from major abdominal surgery. December 27th our whole world was turned upside-down once again. On December 27th Joe was informed that his position at work was being cut. He was being laid-off. Health insurance would end. Joe would need to find a new source for a paycheck, and health insurance. I am currently disabled.
Joe has been actively looking for work since. Every single day. Hundreds of applications, interviews, etc. Joe is always thinking about our future, and how he can provide for us. Joe is a diabetic, and I am an ostomate. We both need medical supplies every day. We were able to get Medicaid. My disability hearing is still many months away, so we have no income coming in. What a blow to a man!
To add insult to injury, the hospital where I must have my surgery will not take Medicaid. Joe feels that if I cannot have this surgery due to lack of insurance, he is at fault. He feels as if he is letting me down. He is not. I tell him over and over.
People have told me to reschedule. In any other scenario this seems like a great option. This surgery is one that I had to fight for. Originally the BCIR hospital could not see the worth in my flying from New York to Florida for this surgery. I argued my case. I explained my symptoms and issues. I reassured them that I was a great candidate. If I cancel, they can decide not to take on my case again. It is very disheartening. Joe knows all of this, and he finds himself panicking, searching for a new position. He is so capable, such a hard worker, he would be an asset to any business.
I attempt to reassure Joe, that all will be O.K. I try to keep his worries down, and his hopes high, even when I am losing hope. I tell him that living with the ostomy bag for the rest of my life wont kill me, and I could try having a different surgery here in Rochester, to remove my colon (it is just detached for now) and relieve myself of the spasms and colon pain. Joe sees the bleeding wounds. Joe sees the rashes. He sees me attempt to hide every wince. He knows there is pain. The pain I can deal with. My quality of life may be decreased, but I can wear a mask for my children, and husband in order to hide the discomfort. I can let them see the me that I want them to see.
I would cry out in private. I would wonder when my break would come. This seems too much weight to carry. At times I would feel sorry for myself, and then I would remember, so many have it worse. I wipe away the tears and put the smile back on my face. Life continues as it has.
The last few weeks I have been brought to my knees in a way that I never have before. Seeing my husband cry. Knowing that he feels responsible in some way, angers me. I makes me made at myself. Seeing him hurt, makes me feel guilty, and weak. I have tried to always build him up. He is my rock. I attempt to be his. My husband is hurting. This is not fair to him. I do not want the surgery for me. I want the surgery for my children, for my family. I want the surgery for my husband. I have known how his past has hurt him, and I have vowed to protect him, to help heal him, and to provide him with additional strength. I am now sucking the strength from him. I feel responsible for his pain.
I hit my knees and pray. I research. I work hard for an answer. How will I be able to have this much needed and wanted surgery? How will I find the strength for my husband if I do not have the surgery? How do I heal what is happening in my home? Why did I have to be so broken. My broken self is now infecting my husband, and weakening him. I feel the pain wash over me, and I pray for answers. I try to stay strong. I try to be everyone's rock. Lately I feel like sand, slipping through the cracks.