A day at a time...

I know there have been a lot of questions about things. It's OK to ask. I try to cover things on the blog, but lately my entries take 6-8 hours to complete- some days it's a sentence at a time between all the other stuff. I write when I am stressed and when I can. Phil inherited this gene that makes him buy things when he's stressed(better than the gene for cancer). And since he loves me so much, he buys technological things for me. Of course I "let" him use them, but they are "mine". When Lily was diagnosed with a tumor- I got a laptop- he did get an amazing deal on it and I love it. It made doing research a lot more portable and I can hold 2-3 kids while "researching". When the diagnosis went from bad to worse- I (we) got blackberry phones which are even more amazing and now I understand why people are glued to them. If you have the means, I highly recommend one, they are so choice. So I can blog via phone at the hospital, when Lil naps and I am not running to the bathroom or grabbing a bite to eat- I type. I put the phone by the window and it sends the messages when it can find a signal. It's a way to vent, be positive, and helps me remember. My memory sucks these days. I used to keep journals, this is just a little more public. And now there will be all this evidence when they finally commit me. One of the hard things when you are going through this is to answer the same question over and over. The blog keeps those who care informed and saves me (and Phil and my mom) from making a billion calls. I find time because it helps me. I won't always be positive, but blogging helps me to be. If you have questions you can ask in the comment section. I can answer when I get a chance.



The next big question is how we do it? I was highly irresponsible and fell asleep the day they were handing out lots in life. This is what was left. If the good outweighs the bad- either I have had some killer times or I am gonna- that's for me to know! We do it because we have to. We don't choose our parents, they choose us. My parents gave me the gifts that will help me get through this, I will do the same for my children. I got to choose my partner and I married my best friend. He knows me sometimes better than I know myself and usually vice versa. We cram in communication between bites of dinner and doing chores. When I am tired, he takes over so I can go to bed at 8 and I get up at 2am so he doesn't have to. When we are both exhausted, we muddle through together. There have been days when he had to work and when the little ones actually fell asleep and I cried so hard I literally passed out in bed. And when I came to, it was all still there except that now I was late to pick up the kids from school. SO that's when our family and friends come in and help pick up the pieces. All I had to do was make a phone call and the kids were taken care of. I don't like it when people have to pick up the pieces for me. I have never been the socialite, or a party girl. There's more to life for me than the superficial so I have a few, close friends. I surround myself with people of quality, not quantity. I have friends who have been through it and seen it all with me. Friends that have earned family status. Situations like this also expedite the extensive screening process I have and acquaintances either fall by the wayside or are promoted to friend status- kinda like a battlefield promotion. And for those of you who know you have earned friend status and are having a hard time coping with all this- I understand. It sucks. Call or email when you can. If all you can do is pray, pray. It helps. I know so many have said they don't know how or what to say or do. I understand. It's OK to do nothing. It's Ok to do something. If it's from the heart, I will understand and appreciate it. If all you can do to help is make your own life easier and better, that's OK. Pain is temporary, love is forever even if it is only the memory of love. So here's some ground rules.



Be yourself. I'm pretty good at understanding human nature and I'm getting better at telling people when they bug me.



If you want to call or email, do it. Believe it or not I can choose to answer my phone or not- I can even turn it off when I need to.



Call First. Even if you just happen to be passing by in front of my house or at the hospital- please do not come by unannounced. We have to be vigilant about Lily's rest and germs.



Be patient. We are prioritizing the best we can. If I don't get back to you right away, I will as soon as I can. I may have forgotten, a reminder is OK- but we are impossibly busy and doing the best we can in the order that is best for us and Lily.



Be flexible. If you aren't sure, ask. We have a calendar, but we are keeping it in pencil.



No Sickies. Sick humor allowed, sick people not. If you or yours have even a sniffle or sneeze, reschedule a visit. Even a cold could put Lily in the hospital. Even if anyone in your house has been sick. We won't be doing big parties this season for that reason. It's not that we have gone into hiding...I've never been a germaphobe...now it's being imposed on me.



It's funny how much semantics can bug a person when they are stressed. Sometimes everything anyone says or does will be wrong. I had a tough time getting it all done before Lily "got sick." We want to be "normal" but our "normal" right now is no where near what anyone would consider normal. So treating us like nothing is going on will bug us. On the other hand treating us like we are porcelain dolls will drive us insane too. See the conundrum? Everyone has been amazingly generous and helpful. Phil and I are humbled at the support we have been given. We are truly grateful for it all. We are both very independent and have prided ourselves on being able to get through many tough times without having to ask for help. Asking for help is excruciating, but we are learning. For those who know us so well and are trying to anticipate our needs and help accordingly, thank you so much. Thank you for doing. The prayers, food, gifts, cleaning, all of it- has been an amazing help and lets me focus on the important things right now- and that's my family. It helps me find the time to blog and heal the little stress wounds. Thank you.



The girls' message for the day: When it pours grab the umbrella and dance.