I was asked once why I do not use my personal blog to talk about my son or EB, as others do. The answer is a very personal one and a respectful one. I want to keep everything separate. My life is such a roller coaster right now, and has been for nearly two decades, that if I don’t keep my thoughts straight, I might lose my mind.
I keep a blog about Nicky, where on occasion I always talk about my husband’s health at Caringbridge (http://www.caringbridge.org/visit/nickyz), and I talk endlessly about EB at my Blog at the EB Info World website (http://blog.ebinfoworld.com/). I even keep a blog about my photography and graphic design (http://blog.sleepingangel.com/). But this Blog is about me. The person that plays the role of caregiver, mom, nurse, student, cook, and of course there is the cleaning, the laundry, the grocery shopping, mom’s taxi… and the list goes on.
Connor kisses daddy after he was allowed to visit him at the hospital after his first stroke
Just the other day I picked up some prescriptions at Target and the gal who rang me up, who knows I am going to school, knows about Nicky, knows about my husband etc, made me feel… how shall I say this… “lazy”, when I told her I was not “working” right now. I left and I was mad that she made me feel that way. If there is ONE THING I am not is… lazy.
I worked at this particular location for 4 years part-time while I also took College classes and took care of Nicky and everything else. It was the most I could do, working more would have meant I needed to hire some sort of Nurse to take care of Nicky at least and a housekeeper as well. Nicky, even though now a teenager, was far from being independent. He needed and still needs help in getting dressed, walk, going to the bathroom, even getting anything out of the refrigerator is an impossibility. It was tough for me to be able to juggle everything, but I made do. Sure, the house could have been cleaner and more organized, but there is only one of me. Then, my husband had a stroke.
In the beginning, things were rough. I was taking two college classes at the time and luckily the professors were more than accommodating in helping me with my work and to help me keep up with the curriculum. At times I had to skip classes, and they were willing to teach me the lesson in the lab separately. A God sent. Work though, was another story. I ended up requesting a leave of absence after I got a call from the Doctors at the hospital wanting me to do this and that. I already had a full schedule taking Nicky to CHLA every other week for iron infusions, dentist appointments etc, plus hours spent daily changing bandages, there was no way I could have juggled everything with my husband being in the hospital for 3 weeks by myself, and I wanted to make sure I could visit him in the hospital daily, and later rehab as well.
When he came home from the hospital, Greg was in a wheelchair. If he wanted to get from point A to point B in the house, I had to get him in the wheelchair and get him there. I had to help him shower, get dressed and everything else everyone takes for granted. The great thing about Greg was that despite it all, he was determined to get better. Within 8 weeks he was walking with his brace and was able to shower and dress himself, and was even able to get back to work. Within 12 weeks, he could walk without his brace around the house and was making gigantic leaps in his recovery. It was wonderful, I was so proud of him. I went back to work after an 8 week leave of absence and things looked good.
Nicky getting an iron infusion at CHLA in his wheelchair, waiting for a bed to open
When I started the spring semester at the college in 2010, I decided to take 3 classes, one of which was my nemesis, Math. I figured that the faster I could get this degree the better off and happier we could all be. This degree legitimizes my work and my passion and it’s something I can do from home and is flexible.
Just a few weeks in, my husband had an hemorrhagic stroke, caused by the Cumadin he was taking, which was wildly horribly monitored apparently. The details of what happened next are some of the most gruesome of my life in every respect. All the progress my husband had made was completely gone, and he was worse off than he had been after the first stroke. We were desperately alone, not a single soul came to visit and my husband fell into depression. Why work so hard in rehabilitation if all the hard work can just be taken away like that, in an instant?
A month after his second stroke, trying to juggle work, school, Nicky’s bandage changes and countless needs, Connor was only 6 years old and still needed me a great deal, Greg was home trying to rehabilitate himself, and I was going out of my mind. I remember clearly one day driving to school, sobbing uncontrollably, not being able to stop. I started crying so hard I felt out of breath, as if I was having some sort of attack and at the time I thought I was on the brink of a nervous breakdown. I don’t want to minimize how I felt, because I don’t remember a time in my life that I felt more overwhelmed, stressed, burned out and depressed as I was at this very moment. When I could no longer breathe I immediately pulled over and stopped the car. I knew that either I was going to force myself to come down or I would have to drive myself to the hospital. I sat in the car sobbing for about ten minutes, calmed myself down and made it to school with the determination that ‘something had to give’. I was unwilling to drop out of my classes, I had waited too long and sacrificed too much to give up on College now, the question was if I could manage without the money I was earning at Target.
Yes, I could cut coupons, try to make money from my websites, maybe sell Avon, I NEEDED to do something that did not require me getting out of the house to do it. I was too badly needed at home. I would have had to quit anyway soon, since at the time I was planning to have Nicky get the Bone Marrow Transplant (which later we decided against), so it seemed the most ‘sane’ thing to do. After all, if *I* got sick, who would take care of Nicky, Greg, Connor?
Nicky and I after his hand surgery this past January
For anyone who might think I am lazy, please, let’s exchange places for one day. Only one day, and then we’ll talk. When I used to work as a manager for Domino’s Pizza I often worked between 60-90 hours a week for… years… lazy, right? Once I get my degree (hopefully by next May) I’ll most likely get a part-time job in my field and do more work from home. I know I need to keep my mind active and busy, I need that for my sanity, but I can’t compromise my family’s health and well being at this time. Maybe in the future my time will be more mine, but for the next decade or so, it will most likely not be. It’s OK, my family is the most important thing in the world for me and I will do what I have to.
Thank You for not calling me lazy!
