Today I celebrate 28 years of marriage today with my high school sweetheart. I love him so much. We had a nice celebration dinner, with our son. Seems like that is tradition with us. I recall two times that we didn't have our son with us one before he was born when I was carrying him and one after he was born. Soon it became a tradition for us to bring him with us. We make it a family event.
I spent most of the day downstairs. I was trying to do little things as I could. I did some dishes and put away the ones that went in the cupboards above the counter. I made lunch for us, then my husband came and he made soup to go with our lunch. After lunch he went back to work. I went to the living room to do some reading. It was kind of dim in there even though I had the window open. I reached to turn on the light in the living room; I felt something funny with my finger. I felt and sure enough I did something. I have to be careful with it now. I just buddy taped it to my other finger for now. I am not wanting to go in just to hear "Yup, a fracture. Let's splint, or Let's cast it." I didn't want to ruin the day for my husband so I didn't tell him what happened. I tend to do this often because with the ease of how easily it is for me or my son even to get injured doing the simplest of things. Sometimes I will hear my husband say "What??!!!! Again!!!!! What did you do???" I know he doesn't mean it, but sometimes just the tone of his voice or the look on his face looks like he's upset that I am hurt again. I move in my chair and I hear cracks in the spine more today and the shoulder blades. I am waiting for something to break. I have a feeling something is going to the way it sounds.
The life of OI is difficult. With what I just told you is typical of my day. I do something then I am afraid to say something because it seems never ending. I realize we all get hurt at times, but it's not pretty much a daily event with most people. The thoughts that go through our minds, are things like how much a burden we are on our families, our children. I feel that with some things that I have been through I haven't been the best Mother that I could be to our son. I had an issue with my chest that started before our son was born, but got worse by the time he reached the age of 2. I went through numerous doctors, hospital stays - weeks at a time, tests, more tests, surgical procedures to have them come up with their best saying, "I have nothing for you; I can't help you." These are not words that someone wants to hear. This continued for over a ten year period. I felt that I failed my husband as a wife, our son as a Mother. I know others and friends of mine would tell me differently. I really wish that I could have done so much more with him. I am healed from the chest issue God did amazing things with my life.
I have to say that our lives are different now that our son and I have been diagnosed with OI. We have to plan things and do things differently so that we don't fracture. I have to say this has been an adventure with lots of challenges. In some ways I am glad I didn't find out until later that I had OI. Why you ask is because I probably would have been identified as that overprotective parent that doesn't let their child do anything. Well, while I may have done some things as a child growing up that I wouldn't let my son do there are others that knowing that we have OI I still wouldn't let him do them. Yes, I did and some I did fracture and others I didn't, but still. I have to say that my finding out until later, as this disease is difficult to diagnose especially when it's not always obvious. My choices in what I let him do and what I don't are easier. I wish I could say that with his school. They are hyper-overprotective. They don't let our son use the stairs, touch or open doors, they make him use the elevator. The other challenge with the school is they don't allow him to carry his bag; feel it is too heavy for him. He does have an order with his IEP for double books. He's allowed to have a set at home and a set at school. The school had me come and pick up a book for him to have for one of his classes. This was not a good idea, but none of us knew it until it was too late. I was carrying his history book out to the car to take it home. The book didn't seem any heavier than most any other book I've carried. I guess for this day it was too heavy. I was walking out with a staff member and I felt a pull and a pop. I went over to the orthopedic on my way home; sure enough there was a fracture. I was upset, angry, frustrated....then it hit... how do I tell my husband that I fractured carrying a textbook???! How will he react??? I told him, he was a little upset, but he knew that this is something that happens. Well, our son's school found out and they overreacted with me too. Now I am not allowed to touch, open doors and I cannot use the stairs. I feel this is overkill, but until they get used to us we need to comply.
Well, I think I have gone on long enough.... have a good night everyone! Time for me to try to get upstairs to bed so I can get a head start on my day tomorrow by being rested to start. Let's hope waking up is easier tomorrow than it was today. Good night everyone!
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