The question everyone wants to ask, has asked and then immediately felt bad or has wondered and decided not to ask. "How are you?" I'll spare you all the agony of asking or contemplating asking. I'm just a good friend like that. =)
I am all over the place. Today has been a relatively bad day so usually I wouldn't be sharing...but, I feel like I'm more honest when I'm raw and hurting. I have a lot of feelings and thoughts that I'm not comfortable sharing yet. I have my moments of total panic, heartache, sadness, defeat, anger, physical illness and even entitlement. I'm sure all of these things are normal. The fact that they are doesn't make me feel any better or any more normal for that matter. I feel like our family, our situation, our lives and our losses are totally unique. I know that isn't true but, it feels that way. It makes me really, truly heartsick to acknowledge that SO many other families have traveled a path quite similar to ours.
Normally, next week we'd be doing an MRI to check on the tumors...this has been our schedule for the past 2 years now. I think my body is preparing for it even though it's not happening this time around. Another peds brain tumor parent shared a similar feeling a few weeks ago. I totally understand what he was saying now. At the moment my emotions are all over the place. One minute I'm fine...the next, watch out. I'm a mess.
For, the most part though I am doing well. We are focusing on having FUN. There is no point in wasting days away being sad and trying to anticipate the future. Hadley makes it very easy to live in the now and enjoy every moment of it. In my quiet moments though, I am often scared, sad, lonely, etc.
The boys have a healthy grasp on what is happening. They know that Hadley's tumors are growing and that she will eventually die. They understand, as much as they can, what it means to die. I do purposely allow myself sad moments with them so that they understand that it is OK and normal and encouraged to express their feelings. One area that we do need to work on is encouraging people to shower them with love and kindness. Hadley is getting 'spoiled' from all directions. Everybody wants to help make magic for her (rightly so). But, we do need to remember that the boys are only 4 and 6 and need a little extra 'loves' during this too. So, we are going to try and make one on one 'date' times for the boys with Brandon and I.
Overall...I feel like we are all living well. We are making the most of the days we have. There is a lot of pain below the surface...but, we're dealing with it as we can.
Thanks for checking in on us. Please make sure to visit Hadley's site for pics and more detailed day to day type updates. www.HadleyFox.com