For some reason lately things seem to be getting worse for me….I can’t really say why either. Maybe it is the gravity of the situation, maybe because now that the Holidays are over & the only thing ahead of us is the thoughts of Milan… I don’t know. I just know that at times I feel this indescribable pain that I don’t know how to break away from and to use words that my cousin just recently txted to me … I feel like everything is closing in on me.
I think when Eli got diagnosed I was numb and then with Ella I just felt determined…first determined to get as many smiles and laughs as I could out of them then determined to not give up and do whatever I could to try & save their life. I don’t think I ever felt angry or mad at God or questioned I just had to focus and not let anger get in the way. Why now is it different?? I do have an idea…
The unknown is not just about their disease and what the future holds but it is also about tomorrow and the worry that comes every day. I wake up every day with one main focus… to see how Eli gets out of bed…to see how he holds his spoon during breakfast. Does he have a tremor… is his speech the same…can he run up the steps like he usually does? These are just some of the things that run through my mind even before he leaves for school. I think I am just waiting for the other shoe to drop and it scares the shit out of me. God please don’t bring us this far with Eli for it to get worse now!
Some people know what they want to do when they are young or in high school…some people know that they want to go to college and be a career person. Me, well all I knew was that I wanted to be a mom and I knew that from a very early age. Kids were so important to me and I knew I wanted at least 3. (Until Eli came along that is…I could not end with a kid who cried and whined like him so I had to have another;) So….the thought of leaving Eric and Evan for such a long period of time is almost too much for me to bear. The thought of not being here to kiss them goodnight, pack a lunch, snuggle or make an amazing waffle and ice cream dessert just leaves this pit in my stomach. Not to mention baseball season…it may sound silly but I have coached all the boys in baseball (up to a certain point of course) and it is one of my greatest joys. I have met so many awesome kids and parents and I look forward to the summer days and nights at UPLL. It is like family there and it is also another thing that you just take for granted….another simple thing that I will miss out on this summer.
Sometimes I feel bad for feeling sad… I mean so many other parents have gone through the same thing, so many have gone through worse… I should be grateful right?? I am very grateful…grateful for the support and love of friends, family, teachers, neighbors, people who don’t even know us…we are blessed. Yet there is a but… I am terrified to watch my kids suffer, to watch from the sideline as they will be poked and prodded to hopefully save their life or maybe just prolong it. People ask me “Did you tell Eli yet? Do they know, how will you tell them” I can’t answer that and I will not even really let it cross my mind. I might never truly tell them the WHOLE TRUH… I mean why? What good can come of it? I will cross that bridge when we absolutely must!
There is a movie called Life is Beautiful…I did not see it but I remember many years ago when I saw pieces of it thinking that if anything ever tragic happened in my child’s life, I would do what this father did in this movie and shield my child/children as much as I could from the reality of the situation. Funny thing is, that was 16 years ago and I still remember thinking that when I saw the movie pre-views. As much as it pains me beyond belief that my precious Ella has this dreaded disease too there is positive that might just help us all in the next year. I am sure there will be a bond that as they get older (God willing) no one will ever be able to touch or understand. They can at least know that they are not alone in this and that their sibling has to go through the same treatment. I don’t have to say to Eli that he is alone and everyone else is fine. That might be a blessing and just might help them both through this. The day that I/we have to tell them that something is wrong with them is a day I don’t want to think about …how do you explain this to a 7 yr old let alone a 4-year-old? So I will let them enjoy life and not say anything until I absolutely have to. As of right now they think we are going to Milan on vacation. YAY VACATION IN MILAN!! Woo Hoo!!!! Eli is so so excited he will have no school!! Hey, I am trying to look and embrace the positives in all of this…that is one of them …for him anyway.
Tonight I go to sleep with one thing on my mind…something another MLD parent told me just tonight “ And remember there has to be a reason why you were chosen to lead the way on this journey. The world is too perfect for mistakes” Amen Kim! You rock and you turned me around tonight when I really needed it (along with some other angel friends) One step at a time… I have to keep telling myself that!! World closing in or not there is no choice … I must press on. Thank God for so many amazing people who help me do this on a daily basis. Xoxo