Sometimes explaining EB and/or my life it’s exhausting. People that truly ought to know better, surprise me with their selfishness, with their eagerness to let me know “they have it bad too”, even though, when the chips are down, they wouldn’t trade their life nor their child with mine in a million years.
It’s called empathy. It’s called listening, TRULY listening without feeling the need to compare or feel the need to put your 2c in. It’s sad when people that go through the trouble of asking me about my life don’t really want to listen, they only ask to make conversation and try to relate, even though that can’t possibly be done, unless you have a kid with RDEB as well.
Yes, it’s hard to work full time and needing to leave work to pick up your teenagers from school. Guess what? I used to work full time and then I had to take care of a child with EB on top of it. Don’t put me down for not working right now. I work, believe me, I work.
This morning I woke up at 7am, fixed Connor his lunch and took him to school. That was the easy part. I just spent the past 45 minutes just getting Nicky ready for the day. He’s not going anywhere, mind you, he needs his body tending to before I take him to his computer. I unplug him from his pump, take off his hand splint, change bandages around waist and his bottom, get him dressed, give him all kinds of medications and make sure he’s comfortable. I will leave in a bit to go to the pharmacy to pick up several prescriptions and pick up some groceries. Connor gets off at 1pm today so I need to make sure I am at his school by then to get him. I will then take him home and make sure he does his homework. Truly, anything with Connor is easy to do, and it’s getting easier as he’s getting older. This is not the case with Nicky. It seems as if he’s getting more and more dependent on me. During the day Nicky will need things. Medications, bandages fall off, he’s thirsty, hungry, etc. After I make dinner it’s time for bandages. I spend the next couple of hours looking at things on my son I don’t want to look at. Taking off bloody or infected bandages that look disgusting and seeing him in pain is something I will never get used to nor enjoy doing.
I never wanted to be a nurse. I am not the nurse type, but I am in full blown nursing mode with him because he’s my child and even though he’s 19, I know he’ll never be independent and he’s OK with that because he knows he can rely on me to take care of him. Then there is the 45 minute night routine to get him to bed. Making sure his teeth are clean, taking care of BM, putting on his hand splint, turn on his fans, get his pump ready, plug him hin, change bandages as he needs them etc.
So, when you tell me you have it bad too because you have to leave work to pick up your teenagers from school… Please.
I read somewhere that comparison is the thief of joy. It really is. Don’t ruin this moment when I tell you about my day by telling me you have it “bad too”. This does not mean you cannot tell me how much you hate leaving work to pick up your (healthy) kids from school. You can. I get it, it sucks! Just don’t compare your life to mine. Don’t tell me you know how I feel because “you have it bad too”. It’s insulting. I would gladly work full time if that meant my son was a healthy teenager. Get a clue.
I don’t mean to sound like I am complaining about my life. Despite it all I am quite grateful for everything. I adore my kids and my husband and I feel thankful for the little things. I hate EB though and the pain my son is in, and I don’t appreciate being compared to others. At a young age I loved listening to people and learning from others without feeling the need to relate nor compare. I probably started doing that because I was compared endlessly at school and with others growing up. I wish people would do that to me. It’s rare. Most people are not listeners, they are talkers. Growing up people would tell me how “quiet” I was, but the truth was that I was intensly listening and learning and I chuckled when I came across the quote that stated that quiet people have the loudest minds. So true! My mind is so freaking loud!
The Dalai Lama said it best: “When you talk, you are only repeating what you already know
Love & Light,