Saturday, August 18, 2012

Daddy Skills

Friday, August 17, 2012

Cruisin' on the IV Pole - Part 2

Thursday, August 16, 2012

Thankful Thursday: Starbucks & Water

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for quality time. Mckenna and I have been spending tons of quality time together. I love all the laughs, smiles, and new discoveries we've had these last few weeks.

I'm thankful for Starbucks. Yes, I'm THAT mom! Every morning, Mckenna and I have made a trip to Starbucks just to get out of the house first thing in the morning...and get a little caffeine in my system.

I'm thankful for a hubby who takes care of himself. It isn't awesome single-momming it, but I am SO appreciative that Ronnie isn't here. When he's away because he's taking care of himself, it makes me love him more. I want him around for decades, and the only way that will happen is if he's gone a little bit each year. I have been blessed with a great man who takes GREAT care of himself for me, and for that, I am thankful!!

Ronnie's List:

I'm thankful for bottled water. I drink water all of the time when I'm out of the Hole, but it's rarely bottled. Here, I'm able to order bottled water with every meal and I generally drink about 150 oz a day. Water just makes everything better...although I do pee about 492 times a day. 

I'm thankful for monsoon season. I have a great view of the mountains and the Tucson sky for this hospital stay and it's been great to see the storms roll through. There was a pretty impressive lighting show last night and I just wish I had a camera handy. There aren't many things that I like in regards to Tucson over Phoenix, but monsoon season is one of them.

I'm thankful for comforts from home. While in the Hole, I have my own pillows, blanket, towels, coffee maker and TV. It seems like a lot to bring, but it sure does provide a little sense of normalcy amongst a not so normal situation. 

So, what are you thankful for today?

Wednesday, August 15, 2012

When People Say "I'm Sorry"

A common response that many of us get when we tell someone, or a parent tells someone, that we have CF is, "I'm sorry". I've heard this myself 1000s of times growing up and I heard it said to my mom a 1000 more. I think there are some things we have to keep in mind when we hear that phrase and I'm so glad that this question was raised to me:

Recently something has been bothering me and I thought you might have some input on it. My daughter is 14 months old and has CF. I don't tell everyone I meet that she has CF but I don't hide it when it comes up. I've noticed a lot of the time when I tell people their response is "I'm sorry". I'm not sure why exactly but that response really bothers me. My husband tells me not to over think it that it's just their way of showing concern. In my mind though I feel like they are counting her out or showing pity on her and I don't want that. 
So I guess my question is, what do you think an appropriate response would be to them or should I just let it go?

I understand your frustration and know that it is a common struggle among parents of kids with CF.

Here's how I look at it. I've been told my whole life "I'm sorry" and it hasn't affected me negatively one bit. That is a fact however because my mom raised me to be a very self-reliant person. She also corrected others who would use that phrase, but in a loving way. As you know, they are coming from a place of sympathy, which they feel, is best in that situation. I mean think about it, all they probably no about CF is that it's a disease "that robs children of air" and forces them to take medicine "all day long for the rest of their lives".

If you heard that about somebody else's child would you feel sorry for them? I sure would. Would you "count them out"? I sure wouldn't. Generally speaking, people react in a way that's been socially groomed because it's socially acceptable. The most socially acceptable reaction to give to someone who is in a tough spot is "I'm sorry".

But anyway, back to my mom. She would respond to a person who said "I'm sorry" with the response that she would like to see from that person the next time. So when it was "I'm sorry" her response was "Nothing to be sorry about. He's a crazy kid who loves throwing the ball in the backyard and chasing his ball around. Life is great!".

If there is something you want others to know about your child's life apart from CF, then you have to tell them. You frame the conversation and "control it" before their pre-conceived notions about the disease control what they say.

Just keep in mind though that often times saying "I'm sorry" is not a way of showing pity, but their way of showing they care.

Tuesday, August 14, 2012

Fun Week - Fun Toys

Last week was so much better than Ronnie's first week in the Hole. Mckenna is feeling more firey poops that leave her little bum tender, no more cold. So things last week were actually, dare I say, enjoyable! I had time to easily get my hours in for work between naps and after Mckenna went down, so when she was up it was just plain old fun time. Some must haves to make the week fun:

1. Play Tent - My friend, Angie, had a play tent set up at her house, and Mckenna just LOVED it. So when we got home, I set up the play tent that we had in the closet (Ronnie bought it a few months ago on a sale site AND fun...BIG WIN). Mckenna loves it. She climbs down the tunnel and shrieks with delight as she enters the tent. We have balls and books in there. So she sits and "reads" and throws the balls around. She loves being in there alone or with momma. And in case you're confused...I have no idea who those kids are - I grabbed this from the internet...but who knows, maybe that will be what Mckenna looks like playing in it in the future ;-)

2. Books - Ahh, novel (no pun intended) idea, right? Well, it's a new thing around here. Mckenna doesn't sit still...ever. She doesn't sit and snuggle, even with momma. But this last week, she started being willing to sit still for a bit to read a book. Usually you have to be extra animated and let her turn the pages (even when it's not quite time to turn the page), but it's progress. Her favorite book is The Itsy Bitsy Spider. She likes when you show her the spider on each page and she gets REALLY close to the page when you show her the spider and he's really little. It's so cute. My favorite is if you read in a bit of a sing-songy voice, she dances as if you're singing the actual song - it's adorable. I also cherish her sitting on my lap, even if it's just for a few minutes. I get to snuggle while nursing her, but that will be over in a couple months, so I like knowing I'll have another time to snuggle during the day once nursing is done.

3. Train - This isn't a totally new one, but she's still really into her train. It's a really neat train that you can do all sorts of things with. Mckenna has figured out how to push the blocks into the slot and have them shoot out the back, which she really loves. She also loves to push the train over and try to climb over it...I swear she looks like King Kong each time the whole scenario unfolds. Nana got her this train about a month ago now, but it just never gets old. She loves sitting and riding on it, as well as using it as a walker. It lights up, plays music and has a ton of different things to do with it. This will be a favorite for a long while.

4. Pop Up Toy - My girlfriend let us borrow some toys, and this was one of them. Mckenna quickly mastered the art of putting them all down, but is still learning how to get them back up. She has now figured out that the middle button is easy - you just push it and it makes it pop up. So it never fails that every time she crawls by the toy, she quickly makes the middle animal pop up, pushes it down, pop up, back down, and on she goes. It's like it's a little confidence booster for her - like, "yup, I still got it." It's so cute. I'm excited for her to learn the other "buttons" because she will feel like a major smarty pants when she can do ALL of them.

So that's what we're up to around here. Just playing and learning! It was a fun week. I am still eager to have Ronnie home with us, but if this week is as smooth as last week, Mckenna and I have got this in the bag :)

Monday, August 13, 2012

Laughs from The Hole