The Eye of the beholder....

Hi everyone! So I thought I'd give LeAnne a bit of a break because she has been so busy and I'd try to update the blog. Yikes, this might be a little scary so hang in there. LeAnne is a wonderful writer and I love her posts. I've been so proud of her and how positive she has made each entry. It's almost like I'm reading about someone else and I think to my self, "wow! what an amazing family, and amazing young man!" I realize that it's my life and my children and then I feel very humbled at what wonderful young people I have living with me. In spite of living with me and their Dad all these years, they are turning out OK!;) As LeAnne mentioned, last week we, well mostly Jason, dealt with a horrible test that eliminated another part of Jason's digestive system, but the after effects of that test were the worst! I'm so glad that it is over, and if I never have to watch and experience what I went through that day with my son ever again, I'll be very grateful. We had another appointment this Monday for another test, this time the doctors were looking at Jason's small bowel. Not as bad as I was prepared for, so I'm so glad! Jason is such a trooper. He always has been. Even when he was ten and fighting cancer. He has such a strong desire to be healthy that he goes through what I feel are horrible things just to have the test results come back empty or within the 'normal' range and then in his Jason way, he'll say "OK, what's next?" My good friend is keeping pictures updated on Jason's Journey facebook page, and it's so typical of Jason that no matter how bad the nausea, or the stomach pains, he is always smiling, always trying to make it a good day. I love that about him. Today I'll be taking him in to see his GI doctor and we will be talking about what is next. These appointments always make me nervous and anxious because I never know what's going to happen, and after we talk, I always feel like I go home and come up with a hundred questions I wish I'd asked. It's so hard when this has been something that in a lot of ways he's been dealing with for so long. I feel like the doctors at times because I'm scratching my head most appointments thinking, "OK, so what do I do next? You'll give me these things to go home and do and then I'll end up with another problem to deal with." For instance, now Jason is dealing with horrible/severe constipation. He's so backed up that the doctor thinks that's what is making his nausea soo unbearable. But Jason will do like I ask him after we talk to the nurses about what he needs to take and drink. But it's hard to watch him gag and struggle to get things down. I know any parent out there reading this is with me when I say, as a parent if you could step in and take away something that you know is a horrible thing from your children you would without hesitation. Jason is still sleeping on a roll away bed up in mine and Aaron's room so that I can get up at 3AM and flush his feeding tube. I guess I'm a bit of a light sleeper, or maybe it's because I know my son is close by. But some nights I listen to him moan and groan from pain or discomfort and it still breaks my heart. I wish I could do more to help him. So today I made me a list of possible questions that I might have. A good suggestion from a good friend. :) We will let you know more as we find out things. You may wonder why I titled this post the way I did. I did have a good reason. I was thinking a lot about things, how crazy life has become, and as a mom and wife how my role in all of this has changed. I thought of that saying "Beauty is in the eye of the beholder". I guess it's because Jason has had playing in the morning music from 'Frozen' to 'Tangled' and even though he's a little off key, I love to hear him belt out those songs. One song in particular got me thinking about that saying. It's from 'Tangled' and it's the one called "I see the Light". I'd post a link for it, but I don't know how. But for any of you who have seen 'Tangled' it's the song that Rapunzel and Flynn sing to one another in the boat when they go to see the lights on her birthday. The words are beautiful and I know are used as a love song between these two characters. But I have found myself thinking about it in my own life. With verses like "All that time, never even knowing just how blind I've been. Standing here, it's oh so clear I'm where I'm meant to be..." You see since Jason got sick all those years ago, I have been fighting the life I have and been trying to make it "Normal". After Jason's surgery to remove the tumor and we were so grateful that it went better than they had prepared us for, one of the Oncology doctors pulled me aside and told me that no matter what happened I needed to keep things 'normal' for Jason and our family because if not it would never get back to that after this was all over. I tried and those that know me know how hard I tried to act and do things as if everything was normal. This is what everyone does right? We all have children go through near death experiences right? 11 year olds that have to re-learn walking, talking, caring for themselves, writing, speaking clearly etc. I know there were many mistakes I made through this time in our family's journey, and I know I'm starting to come to terms better with seeing what I need to do. As hard as it is, I see where I'm needed and it's not 'normal' right now, but I will do my best to help my children and husband so that it's our normal. This is the life Aaron and I always wanted. A home, and children, the good and the bad. But even when times are bad, we still seem to make the kids smile, or laugh, take for instance this past Sunday while I was helping Jason get ready for Church. I am no good at shaving a mans face, or helping with a tie. Not a skill I have. However in my way I helped Jason laugh because I don't know how to do those things. He sees in me just like I do in him someone that is trying to make the best out of a hard situation. Someone that is taking one day at a time and finding the beauty that is out there, even if it's not 'normal'. Maybe one day it will be but then again, this might just be our 'normal'. So it's taken me some time to see the beauty that is in this, and that's OK, at least I'm finally seeing it. It helps that I have great examples all around me. My Ward for instance and neighborhood, I'm surrounded by people that do hard things and keep smiling. I have friends that work full time and take care of their kids full time while husbands and Dads work full time too. These are hard things, and even on their bad days they keep smiling. There are at least 4 different families in my neighborhood that I can think of that have dealt with surgeries and illnesses and long term conditions and even death and they just keep plugging along. They are powerful examples to me and help me to keep looking at my day and to keep looking to Jason and his strength and to keep smiling. Last Christmas I got to see my cousin Jeff which for me would be the last time before he passed away from his battle with cancer. One thing he said to me when we were talking about Jason was, 'It doesn't matter what the journey holds, it only matters who Jason has with him'. It's true. It's not the journey, but the people and in my case, I'm so grateful to be surrounded by family and friends that love us and help us. I'm grateful they are patient with me and my struggles, but most of all I'm grateful for Jason, and my children who teach me to keep smiling, and to keep pushing through. At last I see the light. Thanks again everyone for your continued prayers and support. We love you! Jenn