I actually spent the better part of today forgetting that Hannah was sick with this horrible disease. We had a fun “family” day and went to a pizza place that we like that has carnival games with it. We used to go there about once a month or so. We did the same pizza buffet, sat in the same seating room that had a huge wall-size screen movie (Blue Hawaii – Elvis), and we played in the same carnival area and games. Hannah slept in her stroller, and the kids, Daddy, and I took our normal seats at a table we often sit at.
After that, we had a fun shopping trip at our favorite store, Target. Little Girl A was so excited because she got three headbands and ANOTHER purse (all for $7, gotta love clearances!). Let me tell ya, she has more purses than I do! She is SUCH the girly girl. Big Boy E got another Sudoku book in the dollar area. He just loves puzzles.
We left at 10:30 AM and came home around 3:00 PM. With the exception of the ride home at the end when Daddy and I did talk about it, I don’t think I spent more than 20 minutes thinking about Hannah’s situation during that time. I just really enjoyed having all my family with me and having such a great day. Back to the old ways, you know, Big Boy E and Little Girl A trying to get each other in trouble one minute and then loving each other the next.
Even tonight before and during dinner, I find myself doing an “oh yeah that’s right” when something regarding Hannah’s situation pops into my head. Of course, after the kids got into bed, the first thing I do is jump onto the computer to do some more research (check out my Gaucher’s subpages).
When I slow down and have time to think, I do find myself gravitating towards this. But my family, especially Big Boy E and Little Girl A, are a welcome distraction, and I can’t wait to have more family time together. Perhaps this does get easier over time, especially now that we know what we are dealing with, knowing there is more time than we thought, and especially since she doesn’t have any symptoms (other than her huge spleen and liver that she has had since birth so we are used to that). I just see her smiling and laughing face and her hitting her developmental milestones (granted, slower than most, but she is still hitting them – better late than never!).
Or maybe this is going to be an “up and down” progress instead of “time heals the wound” process. Damn, I feel like I’m in unchartered territory here. It is almost like an “ignorance is bliss” feeling. If I don’t think about it, maybe it isn’t real. But I do know that once we start in with the specialists, the treatments, the research, and the other therapies, it will all be smack dab back in my face.
Thank God for my kids and my husband. They truly do make me happy.
I am sooo glad that you had a “reprieve” day! For ALL of you! I’ll bet the other kids enjoyed having a day without anxiety or worry too, just like the adults. Maybe you’ll have to schedule one day a week where you do this, for all of your sake. Everyone needs time off from worry, work, etc. I’m glad you had yesterday. 🙂
Carrie- Days like these are absolutely terrific arn’t they??? All of the appointments with specialists, therapists, blood work, treatments become your ‘norm’ after a while. You’re going to look back at the pre-diagnosed days’ and be like “What in the world did I do then?”. lol 🙂 I’m so glad you guys had a good day. We love Target too 🙂
In our experience so far, we’ve found that these days where all seems normal do come more and more frequently. Or, as I’ve written about in my blog, “normal” just becomes redefined. Hannah’s special needs will become a part of your every day life, and you’ll adjust. It won’t be “easier”, but it will be “more normal”, if that makes any sense. People who just meet Connor, or who are just learning of his history and future often tell me “I don’t know how you get by, I don’t know how you make it all seem so easy.” Well, we just do. And so will you, in time. Hug!
It’s great to have a “normal” day. It helps to rejuvenate the energy and spirit of who you are. Also, your entire family continues to make wonderful memories while bonding and loving each other.
I am so glad you had that and I hope you have many more.
Congratulations. As people said, dealing with everything is getting normal for your family and no family is really “normal” anyway. There is always something to deal with and sometimes you have to kick it to the curb and just have fun. As my grandmother would have said, “If you can’t change it, you’ll have to live with it.” That’s all you are doing and enjoying yourself and family along the way.
You are so brave and have been through so much. No one can live in that heightened state of arousal forever and it isn’t good for any of you (including Hannah). Your family needs the opportunity to spend time together doing fun, happy, family things.
I am glad to hear you gave yourself a bit of a day off. Thinking of you.