While spending the weekend at his dad’s, Nicky sent me a video on my phone, showing me how the little plastic cover for his g-tube had broken off. He could still “close it”, but it would not last long. I told him that we could change his tube today when his daddy brought him back and he said OK, but I am still reeling from seeing the video of my angel with yet, another obstacle.
For those that never had to change a g-tube, let’s just say it’s 100% gross and very painful. I am no nurse, I never wanted to be a nurse and just to think I had to learn to do this kind of stuff makes me queasy. The first time that I had to do it I was beside myself-the whole story of that day is in my book. In the 16 years since Nicky got his g-tube in March 2000 I’ve had to replace it myself a dozen times or so, maybe more, and it’s never easy. I need to make sure he’s very medicated and relaxed because when he tighten the muscles of his stomach it makes it harder. So I usually have the Doctor do it when he’s under anesthesia for a throat dilatation.
It’s always something.
That’s what sends me in despair at times more than others, when things pile up on top of each other. When on top of him having wounds in places hard to wrap which become huge issues, he develops other things, such as colds, corneal abrasions, or when he gets a particular painful wounds on his hands or his shoulder. He is also allergic to “something”, which makes his nose go constantly. There are times where his care becomes so overwhelming I may be doing a pharmacy run to pick up a ton of meds when I am seriously tempted in buying a whole box of “Double Stuff Oreo cookies” and sit in the car while I finish them all.
My psychiatrist today asked me: why don’t you?
Because I don’t want to soothe myself with food. Because I know I will feel guilty afterwards. Because I know I will feel like “crap” after eating a whole box of Oreos, so much so my body will revolt. I try so hard to treat my body like my temple, eat good exercise etc. But he told me I didn’t need to get a whole box… “How about one of those little packages? You need to let the pressure off somehow”.
He may have a point. But the larger issue remains that I *MUST* remain stable and capable to take care of my family, I can’t just lose it with food or alcohol binges. It’s just not me. It’s not who I am. So he told me to make sure I take tons of time for *me*, which I do, and he nodded in approval. He was very happy that I go to the gym, that I take a bath twice a week for a couple of hours to read, he’s happy I get a massage and a manicure once a month and to keep at it, so why do I feel guilty about it? It’s exhausting. It’s mentally exhausting. He upped my Lexapro and hopefully that will take care of my moments of despair. He also said I truly need to spend more time with friends-but not just any friend, the “right” friend. The friend that will listen, understand, have tons of things in common and I can have fun with. I do have many EB mom friends here in California so my resolution is to spend more time with them.
The truth is, I love my Nicky just the way he is, I just want the EB to disappear. He has the most loving soul I’ve ever met. He’s the sweetest boy ever. I am just trying to make it through the day and be strong for him, and sometimes it’s hard. It’s hard to be a cheerleader and motivator after nearly 20 years and it’s hard to keep it together, but I don’t have a choice. I must fight because my son needs me to fight. I keep going because I am all he has, and aside his dad, nobody else will fight for him. I learned to put my own needs and wants aside because I value the life of my child much more than my own. So this is why I feel guilty for taking on my guilty pleasures at times. I can’t change that. It is what it is. I just gotta remember that when mamma is happy, everyone is happy, most of all Nicky.
To all EB moms out there… let’s get together <3
Love & Light,
