My husband and caregiver

     I've had a few different topics on my heart to write about lately, but this one seemed to be the right one for tonight. As I sit here listening to my lil man and big man wrestling around getting ready for bed I can't help but smile and realize how lucky I am to have a husband here with me helping in everyway he knows how. It is so easy when you're sick to constant focus on your own pain, your own exhaustion, your own depression after bad news, your own fears, and often forget about the person taking care of you. I've spent most of the day rolling this topic over and over in my head trying to see all of this from Josh's perspective.
     Most people know our story, how he helped me out of the darkness of my eating disorder and self harm and was there every step of the way as I began the long road to recovery. As my recovery from anorexia and self harm was becoming pretty firm the gastroparesis reared its ugly head causing me to get sicker. We had only been together a few months before I stopped tolerating tube feeds. He sat in the ER with me more times than I can count listening to the surgeons telling us it was the disease progressing and they couldn't do anything about it. When I ended up with swine flu he practically carried me to the ER because we didn't have a car so we had to find buses to get everywhere back then. I was put in isolation and a PICC line placed to start TPN.  At this point Josh learned everything from dressing changes to setting up the infusion. At this point I was sure he was going to head for the hills because it wasn't like we were married, he didn't have to sign on to take care of a sick woman. His love never faltered though even on days when I wanted to give up he was there smiling and spiking another two liter bag of TPN.
     After a month insurance decided that they weren't going to pay for IV nutrition anymore because I had become more stable. Josh watched as I began to crash again, getting so weak I couldn't even walk to the bathroom or shower without his help. During that time I selfishly could only think of how this disease was unfair and throwing myself little pity parties not even thinking about the man who was devoting his every moment to take care of me, giving up his whole life to clean up puke, spending nights sleeping on the floor of the emergency room, and holding me while watching a chick flick rather than going out on the town. He did it without complaining and he became my voice as I got weaker. He argued with doctors and Medicaid all the while dealing with my childish "why me" crap. He would just remind me that we were like Johnny and June and would get through it together, and when I thought he was done with me he proved me wrong by getting down on one knee in our bedroom asking me to marry him. A few days after we got engaged my IV nutrition was approved long term, we were moving into a nice place where his kids (I consider them mine too) could stay with us, and though I was still sick we were doing much better and facing every challenge that came our way together. We had no idea where life was headed.
     When you are on IV nutrition with a central line it is only a matter of time before you will get a line infection, we do everything possible to prevent it, but sometimes it just happens. I was admitted to the hospital with a line infection on Mother's Day leaving daddy to take care of three kids on his own, which went well except during nap time our sneaky middle boy buzzed our beautiful little girls hair. We noticed over the next few weeks after I got out of the hospital that I was extra tired and seemingly  more nauseous which we attributed to side effects from the antibiotics and iron infusions I was having at the time. The symptoms were kind of weird to me so at my next doctor visit I told her that it just didn't feel right and since I hadn't had a normal period in so long I thought maybe we should check. She actually said it would be a waste of time because I can't get pregnant with how serious my disease progressed. I got a phone call when I walked into our house being told I was pregnant. It was a miracle and a huge bomb I dropped on Josh because he has called me on his way home to check about the appointment and I wouldn't tell him anything, so he thought I had to go back to the hospital. I still wish I hadn't been in shock myself because a picture of his reaction would have been great to have.
     We went to the OB and found out that we were roughly eight weeks along which meant that I was pregnant when they had removed my port in the OR and replaced with a PICC. The next part of this is what changed our lives. They sat us down in the office and strongly suggested we terminate the pregnancy because my body would not be able to support the baby for nine months either I would die, the baby would die, or we both would. My first reaction was anger without even looking at Josh or considering the fact that if I died I would be leaving him with a newborn and no help, but I couldn't believe that they wanted me to kill a miracle that God gave me. The docs switched from speaking to me to Josh saying he was the one who would have to convince me or he could lose me. Neither one of us would budge...this baby was coming in nine months or it was in God's hands. At 11 weeks pregnant they did surgery to put another j tube in because it was less of a risk than my line. I had a very hard time with the surgery leaving Josh once again completely in caregiver mode. I was put on bedrest, he was cleaning out vomit bins, and so much more. He did it all for nine months to help make sure Damien and I would be ok. He has only recently told me how scared he was during that time period esp since we were told that the pregnancy would most likely make my disease worse, but we faced it together like everything else and on February 17, 2011 Firefly came into this world weighing in at six pounds ten ounces and perfectly healthy. The pregnancy had taken a toll on my body, that we now know was not temporary as we had hoped.
     It has been almost three years since our miracle came in this world and I can say that neither of us regret the choice to allow our miracle to happen because he makes us smile even in some of our darkest moments. Seeing now what the years of being sick have done to Josh I can see that my disease has not only impacted me. Yes, I'm the one that goes through the pain and has lost my quality of life, but he has to watch the woman he fell in love with slip away and there is very little he can do to stop it. I hear him on the phone with doctors, lawyers, and anyone who will listen to try and get me better care. He holds me when I cry about being scared of dying while holding himself together thinking he can't lose his butterfly because no matter how much we've argued over the years we have always been meant for each other there are no other puzzle pieces out there that would match what we have. I've watched him in pain still doing everything for me driving over a hundred miles round trip to doctor's appointments, pushing me in my wheelchair, forcing me to wear my masks, keeping nurses up on the fact that my wt is never to be told or discussed with me, and that doesn't include the multiple ER trips after he has been working all day and just wants to rest.
     It is tough being sick, but I think those of us who are sick need to realize that it can be just as tough on the people who take care of us, love us, and fight for us. My husband has shown me what true love is, caring for me all these years when he could have left at any moment and found a woman who isn't broken and sick. He has stayed when I've pushed him away, closed myself off to the world because I wanted to feel sorry for myself. Living with someone who gets overly exhausted just taking a bath is rough. We are both still young, young enough to be going to concerts and enjoying life with our son. We still have a great family, but it breaks my heart that when we go do things together my son rides on my lap in the wheelchair. He doesn't know the difference because he doesn't know mommy as anything but being a sick mommy, and he is the best little boy about it never messing with anything he isn't suppose to medical supply wise. I think the main reason I wrote this is to remind myself and if anyone else that reads this how important it is to stop and think about the people in your life. My husband gave up his own needs to fight for me, he has devoted himself to being a wonderful father and saving my life. You know a man truly loves you when you accidently dump a whole cup of stomach contents on him while he is sleeping and he doesn't get angry. Think about who is there for you when you open your eyes after surgery, holds your hand during painful procedures, and remember that watching you in pain and being helpless to stop it hurts them too. I  love my husband for giving me his heart and always putting his family over himself, there aren't a lot of people who do that these days. We've lived through some tough times not just me being sick and we always pull through together and I know that with him in my corner I have a really good chance at winning this fight.