Did I ever mention that? It just plain sucks... there is no other word for it. Yes, I know that there are so many cruel diseases and disorders out there... and none of them seem fair. But EB has to be one of the most horrible. I hate it with every ounce in me. I hate that my son and other babies have to suffer every day from something that has no cure. I hate that we have to live everyday knowing that this will be our life and his life and it will never go away. I hate that this disease takes the lives of beautiful and innocent babies. I hate that it consumes families and does not allow them to have a normal life. I hate that people out there don't realize the actual severity of the disease. I hate it's 87% mortality rate in the first year of life... it makes me cringe. I hate that my son will never have fingernails or toenails. I hate that he will spend his life wrapped up in gauze and we will never get to see his skin. I hate that he can't put food in his mouth because it hurts so bad. I hate that he is miserable unless he is on steroids or pain medicine. I hate that we can't go anywhere (out to eat, shopping, where ever..) because we have to suction him so much. I hate that we have to be so careful of people touching him or holding him because he might get normal baby stuff like a cold and it could be life threatening. I hate when he falls asleep on his side, that when he wakes up his ear gets stuck to the blanket and bleeds. I hate that every day I am peeling skin off of another part of his body. I hate that I have to feed my baby through a tube. I hate when he looks into my eyes and I know he is hurting and I can't do anything about it. I hate EB. I hate it. There.... I got that out.
We have been at my Mom and Dad's house all week. We are in the process of adding on another bathroom and living room to our little house. There was too much dust, so we had to get out. It took us 2 carloads FULL to get everything here. It's been a nice little get-away, and I've felt better because my mom and sister aren't traveling back and forth to Norco for this week! Tripp has been pretty miserable... on and off, but I'm pretty sure it's because he got off the steroids. I called the doctor mid-week and started him back on a low dose, but it's not working as well as starting him high and tapering him. So she is going to check back with us tomorrow and see how it's going. Hopefully we can start him at a higher dose and taper him again. Last night he finally slept a little better, but the 2 nights before were a nightmare. I was just plain worn-out. But then I kept thinking about if I didn't have him here and I didn't have to get up at night... I would be lost! That made it a lot easier, knowing that I live every second of my life for him... and what I do for him makes his life a tad bit easier. I just wish he could have a little pain relief sometimes. It's emotionally exhausting watching him hurt all the time. But on the other end, when he is on pain medicine and steroids, it's like the happiest moment of my life when he's happy and smiling. I'm just ready for him to be able to TELL me what's wrong. And maybe I can help better. It's hard knowing what's hurting when anything or everything could be hurting him. It just really stinks. But on the bright side, he could not be ANY cuter and ANY sweeter. And I just LOVE him with everything inside of me.
I'm sorry I've been slacking on the posting lately. I've been a little down in the dumps for several reasons. It's just really hard being so positive all the time when you just feel like you want to SCREAM! And I know I'm speaking for all the EB mom's out there. You try to be positive and thank God for all your blessings but sometimes you just want to say, "How in the world are WE lucky??" And it's so easy to think like that and to get down and out. But when I really stop and think. I really am blessed and I really do have a LOT to be thankful for. I could be doing this without my AWESOME family. And I could be doing this without all of the benefits that have been put on for Tripp. That has helped us TREMENDOUSLY. I don't think we could make it without having the money in his fund. Thank GOD for the people who have donated their money to help our son. THOSE are the things that make me say I am blessed. And even though everything about this disease is just horrible, at least we have people who LOVE us and care enough about us to actually know what we are having to go through. God bless the people who try and make our lives as stress-free as possible and God help those who try and add more stress to our lives. Because God knows we don't need that!
Thank you so much for all your continued love and support. It means the WORLD and it gets me through the day.
Tripp and Daddy
Tripp and Papa
Tripp and Aunt Lydia
Tripp and Grammy
Tripp and Nanny outside!