What I want you to know about five

What I want you to know about yourself at five...
Oh where to begin. Well, you are all boy. You wander groggy-eyed and grumpy out of your room each morning, and within three minutes you go from my sleepy snuggle bug to full speed awesomeness. You love to run. You love to jump. You love to sing.
You're tough. I mean like wrestle a 6'5" cop kinda tough. Although to be fair, you have been known to holler for you mom when Daddy's got you pinned. Then as soon as he lets you up, you do the Angry Bird holler and run right back for more.
You love to talk. Sometimes when you get super excited your voice gets pretty high. Hence the nickname Beaker. You have so much to say about so many things so often, it just gets hard to fit it all into one breath.
You are smart. I'm fairly sure you are going to be smarter than me. Hence you shouldn't read this until you're an adult.
 You're my little gps while we're driving, and I'll be darned if you're not right most of the time. You're memory is amazing. When I can't find my keys, you're the first person I ask. You can locate anything at any time with the notable exception of your shoes. You can never find both shoes at the same time.

You believe that the world should be fair. When someone is being picked on, you have no fear I mean no.fear. of standing up for others. I've seen you do this with friends and most especially your sister. And although it has gotten you and I in some sticky situations more than once, it is one of the things about you that I am most proud of. It reminds of your Dad.
I believe that is what I would call being not only compassionate but also brave.
You're strong willed. The smart and the strong willed make for some challenging moments, but I cannot wait to see you use that as you grow up. I listen to you and think that one day no one will ever be able to stop this kid from whatever he sets his mind too.
You love. I mean wrestle people to the ground and hug them til it hurts love. Write letters to people and give away your toys to people kind of love. We were all very blessed by the abundance of Angry Birds that you kept trying to give all of us last year for Christmas. And I'm not sure what an 18-year-old needed a giant Scooby Doo pillow for, but you dang sure wanted him to have it.

You still snuggle. You'll run and play and wear yourself out and then plop down beside me. At night you still sneak into my bed to snuggle, and the truth is that I love that.
You bestest friend in the entire world and person you love the most is your sister. You sit with her while she does treatments. You've spent countless hours playing Pet Shop with her while she's hooked to machines. Every Friday night you announce that the two you will be having a sleepover in someones room. You giggle. You argue with her. And not five minutes later the two of you are giggling again. The two of you together just make my heart happy.
You're so excited to have another sibling. You're praying for a boy. The first week of school you brought home a drawing of our family. There was Dad, Mom, Grace, you and your new sibling. Also you drew Angry Birds.

You can do the best face scrunch I've ever seen. You scrunch your little eyebrows and your forehead, and it never shows up well in pictures. I giggle every time you do it. And I have to tell you that many times I've sent you to your room just so you wouldn't see me belly laugh at that face.
Oh my sweet Seth, you are just ah-mazing. You're my Bubba, my little bit, my precious baby boy. I do love you so <3

So she's cultured psuedomonas

Okay I'm going to try to compose this in a readable manner. That said, I'm a little shell shocked right now. I mean I KNEW we had beaten this psuedomonas infection. I mean her pfts were the highest they've ever been. I mean EVER been at her appt last week. I know in my head that doesn't automatically equal a negative culture, but my heart was pretty convinced.

So I'm going to try to explain this bacteria. It grows in stagnant water. So leave a bowl of water out for a day, and you have psuedomonas. Not a prob for healthy peeps.

But it does so enjoy the stickiness of cf lungs with all their mucus. In this case, my daughter's lungs...
So she cultured it once when she was two. It caused some scarring in her lungs before we detected it. We were able to stop culturing it with a round of inhaled and oral antibiotics. Important side note: trying to do swabs to detect lung infections are tricky. Being negative for a bacteria does not absolutely mean the patient doesn't have the bacteria. It simply means that the particular chunk of mucus did not have the bacteria. But she had not cultured it for nearly six years so pretty sure it was dead.

So she cultured it again a couple of months ago. Once again we did inhaled and oral antibiotics. And now she's cultured it a third time. So we will once again go after it with inhaled and oral antibiotics. But the more often she cultures, the more likely it will become colonized, aka permanently set up shop in her lungs. And right now the doc believes this will be our last attempt to completely wipe it out. If she cultures again, we just try to keep it from overrunning her lungs and causing scarring.

So what does that mean for Grace's future? Seriously, I'd like an answer to that.

The truth is we don't really know. Many, many cf patients are permanently positive for psuedomonas. Is it a good thing? Abso-friggin' positively not!
Could she have cultured worse things? Crazy, scary bite your nails yes...so much worse.

So lemme try to explain this.
Today I feel like CF is this big monster, and it's got my child by the arm. This monster is straining to pull her away and off the edge of a cliff. And I'm holding onto her other arm. I'm pulling as hard as I can. I'm throwing bottles and bottles of pills at this thing, loads of nebs, a pink Vest and every specialist I see. And most days I can keep my baby from moving. Most people don't notice that she's moved at all. But it's happening. By tiny baby steps and against all the force I can muster, CF is gaining ground.
And as wonderful as she her lung function is and as much as she's growing, I still know that the cliff is off in the horizon. And it scares me more than I could possibly put into words.

Today I know we lost some ground. So I'm going to cry. I'm going to be sad, and I'm going to be angry. I'm going to pray in between the sobs, and then tomorrow we're going to keep fighting. And I'm going to keep pulling.