THIS POST IS WAY OUT OF ORDER. I FOUND IT IN MY SAVED DRAFTS AND DECIDED NOT TO WASTE IT. JUST DON'T FORGET AS YOU READ, SPRING AND SUMMER HAVE ALREADY PASSED. THE POST BEFORE THIS ONE IS THE NEWEST UPDATE TO LIFE WITH MEAGHAN.
Spring has sprung so why not have a cool afternoon snack outside! Or get the bubbles out. After school or between baseball games, these are some of our favorite things to do. I'm quite pleased with myself for getting the giant bubble picture the way I did. It could be better quality but for the mom who relies on her iPhone I think it's cool. After all we've been through it makes me happy just to see Meaghan outside doing "normal" stuff. She looks good, right? No, you're right, she looks great! Months and months of disciplined medication and therapy regimens put color in her cheeks and more "meat" on her bones. Meaghan knows that it is important for her to keep up the hard work of staying healthy if she wants to enjoy more days like these.
One of Meaghan's favorite things is what we call "Tube Free Friday". A couple months ago I mentioned that her nutritionist made Meaghan a deal. If Meaghan tried really hard to eat regular meals and keep her weight up, she could have one day every other week off of her feeding tube. While I wish I could say that Meaghan is eating better, that would be a lie. Once in a while she'll eat a lot or willingly try something new. Mostly, she barely does enough to keep a bird alive. But, the nightly tube feedings are doing the trick still and her weight continues to climb. So every other week Meaghan gets to choose where she will spend her "Tube Free Friday". Since her feeding tube set up is in her room and she's always "stuck" there on it, she never spends a tube free night in her own room. Until last week she would sleep on an air mattress in her brothers room. She and Jonathan loved it, Jimmy, not so much. This time when she asked if she and Jonathan could sleep on the sofa bed in the basement I thought, "No way, you'll never stay down there" but I said, "Sure" anyway. Believe it or not, they did stay there ALL night. She can't wait to do it again, she even said she's going to eat better so maybe she can have a "Tube Free Friday" every week.
What made Meaghan the happiest recently was so simple. She started school after Spring Break by riding the school bus. All the rest of her little life she watched Jimmy get on the school bus and dreamt of the day she would too. I spend my days thinking of the big things. Will the scientists working on a cure for CF find it for Meaghan soon enough? Will she live long enough to go to college, fall in love, get married, start a family and bury me? She dreams of riding the bus to school. Going on a school trip to the zoo next week is as long range as her thinking is. Isn't that GREAT! I read this yesterday and I think it's so awesome, I have to say it out loud to myself when I start thinking my way instead of Meaghan's way. "EVERY DAY IS A GIFT, THAT'S WHY THEY CALL IT THE PRESENT''
Yesterday I spent some time with my boys. Jimmy is out of school for Spring Break this week. It's awesome because my boys are GREAT and I don't really get a lot of time to spend with them alone. We packed a picnic lunch and headed to the park. We had our baseball gear and basketballs. Enough to keep us busy for hours, then the rain started. Oh well, it was just a drizzle so we stayed and played anyway. I was blown away by the interaction between Jimmy and Jonathan. At home it seems that they can not help but aggravate each other. But on the field, court and playground yesterday they were best friends and it reminded me that I am the luckiest mom in the world. 
