What do you do when you think you are done digging for strength, done trying to think everything will be ok and when you are so angry that you can’t even properly place all of the emotions that you are feeling? You absolutely have NO choice and you keep digging deeper… through the fear, anger, sadness and frustration you just look for that something … maybe you did not know you had it…maybe it only comes out when you so desperately need it and maybe you really don’t have it but as you pretend, you start to believe the face behind that false bravery and you hope that maybe that is the person you will turn into.
I never imagined that I would have so many challenges from so early on in my life…having so many times where I had to dig deep to love, to forgive and to accept that there were many things that I just could not change. Every time I went through a new challenge I would think…ok what did I learn from that and how can it make me a better person. I do wonder how two robberies in three months in two different homes can actually help me learn something but I am just trying to think there has to be a reason there. I am (soon to be was) a very sensitive person but as I have witnessed in the last almost year, life changes you. For me it’s a good thing to not be so sensitive anymore…why was I ever so worried what anyone thought of me, my feelings or my goofy fun times with my kids when I definitely don’t act my age. (I will break and say that my Eric needs to learn to chill out) I think I embarrassed him more than once on the train in Milan and he was so concerned about what people thought. Gosh, I hope I can teach him that these things are so unimportant in the grand scheme of things.
From challenges come growth, change and a lot of swear words. As today is our 36th day in the hospital (Although I should not say OUR because it is only Eli’s 36th day here) the language barrier might be one of the biggest challenges here, so… I am hoping to know more Italian when I come back with Ella in a few short months. We have ordered a few wrong meals, gotten some mean faces and spent quite a bit of extra time trying to figure out how to flush a toilet. We have tried to figure out the grocery stores, the subway/bus and even more importantly the hours that things are open here. It is not like America where so many people are overworked and never take a break. Sundays are a day of rest (along with most stores taking a break every day for an hour or two in the middle of the day) It is definitely a lifestyle that would not take much to get used to. On to the biggest challenge I could ever imagine…the hospital!
It is interesting how I thought that chemotherapy would be the biggest challenge …putting that poison into my child hoping it will allow for new marrow to grow and hopefully save his life or prolong it. I thought he would be sick and have all the nasty side effects that I had dreaded since the thought of chemo entered my mind. From the first to the last infusion it was hard to watch but aside from some nausea it was not too bad. (The anti-seizure drugs I would like to forget as he was so mean) About 10 days after chemo the mouth pain started with one sore and a sore throat. UGH… I had hoped he would stay clear from mucositis but no matter how many mouthwashes we made him do he still got it… although I know it could have been much worse. He stopped eating completely and the sores got worse covering the whole inside of his mouth. A side effect from this is a constant drool. For about five days the drool would just pour out and whoever was with him would be wiping his mouth every two minutes. He could not swallow and he could not spit. My heart was broken for him. He was on liquid nutrition and not talking from the pain. As his sores slowly started to get better they started weaning him off of the nutrition so he could eat. This is by far the biggest job anyone has who is with him. Every ML of liquid has to be written down, every tinkle has to be saved to make sure he is getting enough fluid. Eli has always been my picky eater, my challenging child and my unbelievable stubborn little man. The qualities may serve him well as he gets older but here… not so much! Every five to ten minutes you put a cup up to his mouth where he drinks maybe a sip to only put it back down. You fight with him over the next hour to get maybe 75ML’s down (if we are lucky). Food has the same effect on Eli…it comes in the room and he is not hungry…you pick a piece of chicken apart for him to eat five bites over an hour all the while being angry because he just does not want to eat. He can have pizza now once a week and that has been a huge help!! You watch him, beg him to eat, then he gets on the scale and you watch the numbers praying that he has not lost any more weight. Just tonight as I was trying to get him to eat he started yelling at me that this is my entire fault. I am the one who made him come here and I am the one who thought that he was weak and needed to get stronger by coming to Milan and getting lots of needles. Yes some tell me be grateful he can show me his true feelings and I am but it is not easy. When I need it I take a break and have a little OR BIG cry in the bathroom and just keep on keeping on.
I don’t think any of us see ourselves for who we truly are or maybe we don’t want to believe we can be so much better than what we are. I never in a million years thought that I needed to contemplate life more than I did before MLD …yes I was one of THOSE people…always wondering what my plan was, why I was here, knowing that my main goal was how can I make a difference in the life of children. Now I sit in the hospital and contemplate once again but this time there is silence…I feel nothing… I feel like God is a distant memory of when I believed that he gave me these amazing children to let them feel so much love and so much happiness from their mother…and to let me break the cycle of my own sorrow and demons from my years growing up.
As the sadness sometimes is so much to bear…being so far from home and watching Eli be so brave when there is nothing I can do. Worrying about going through this with Ella…living here again…being away from the boys. I feel alone but maybe it is ME that is shutting myself off from God. Right as I was about to publish this blog I got an e-mail from a friend that made me realize God won’t let me go that far from him without trying to bring me back in where I need to be. Thank you Alyssa for showing me that God is still here and he showed me tonight through you… I guess I will keep digging.