Tag Archives: SIGH

serious face.

I visited our local grocery store yesterday. Just doin’ my Saturday shopping. Like the rest of you out there. When I go out in public, I have my “serious face” on. Especially at the grocery store. Not a mean face, just my serious face. Which means, please don’t bother me because I’m calculating and thinking and I really need to get my stuff and get out.

Reaching the checkout line that has a short line is kind of euphoric. Once you’ve completed your long and exhausting zig zag race to that line, you feel a little triumphant. Sometimes those feelings are at a halt when you get your total, but even that’s okay. Getting your receipt and change means you are on your way outta there!

In fact, at this same exact store about a month ago, I met a bagger who was 15 weeks pregnant. She was very young, maybe 18. But I remember that she was really pretty and sweet. After asking her how she was feeling and when she was due, and after having our small chat, I told her about Natalie. I started with, “definitely do not feel freaked out, but…” I reminded her about her 20 week ultrasound and to “please make sure that the heart photos are super clear..” I didn’t have any time to tell her about pulse oximetry and that she should include that in her birth plan. I kind of hate that it was so busy that I couldn’t say anything. I hope I see her again.

I reach this triumphant line yesterday and the cashier smiles at me. He asks me how I’m doing. This is when my serious face is put aside and I can enjoy a good chat. I like chatting. Especially small chat. I don’t mind cashiers speaking to me at all. I’m only annoyed when I visit other types of merchants and they have to over sell me. I know all of the tactics. This comes from a person who worked in retail and retail management for several (too many) years. Yesterday was the first time I was asked about my “Give Kids The World” t-shirt. A shirt I bought right before we left from Natalie’s Make a Wish trip in December of last year. The cashier says something like (I can’t remember his exact words) “..so the world is full of happiness? what?” He said it with a smile so I was totally cool with telling him about this awesome place. I casually mentioned that I had a daughter born with half of a heart, but emphasized how well she’s doing right now and how amazing her Wish Trip was. He stops scanning my groceries and looks right at me and says (this I will never forget) “..I think I should be given a wish because it’s just not fair.” I immediately see where he’s going with this so I just nod and smile and pretend to really only care about my growing total on the computer screen. He continues on with “I’m 24 years old, I work for minimum wage and there are so many things in life that I can’t do because of that. I think Make a Wish should grant me a wish. I know that they only deal with sick kids who have life-threatening illnesses, but it’s not fair. ” I was getting a little bit PO’ed. I tried to add a smile with a small snippet of this and that… “well my child is ill with an illness that could take her life any day” and he would just cut me off with his story. He paid no attention to anything I was kindly trying to say. He somehow got into a story about how he had to pay for cheap tickets to some sort of wrestling event this summer and that it should have been free because he noticed some Wish children there. I honestly have no idea where he was trying to keep going with this conversation. But the only conclusion I have about this 24 year old MAN, is that he is upset, jealous, and probably has no idea what I was trying to say. I’m not mad, actually. I was irritated. I was a little upset. But I just loaded up my van afterwards, and calmly drove off the lot and went home.

The world is full of awesome people. When you have a child with a life-threatening illness, the beautiful people really pop out. Unfortunately, you meet people like this 24 year old man who simply just don’t understand certain aspects of life. I can’t expect him to. He probably feels like no one understands him. He could be pretty self-absorbed and petty. But I’m not him. But he’s also not me.

I probably should have just said “hello” to him and not given any eye contact.

Note to self…….

8 days ago..

Ahhh! So sorry for the lack of updates. Broken promises. Broken plans. Yikes. I intended to update this blog for every day in August. I had a little sliver of doubt at the beginning of the month. Once I got going, blogging everyday, I started to see our calendar fill up. Some days with plans oozing out of the huge box with that day and it’s little ‘ol number. The sliver of doubt began when I saw the beginning of school for Natalie, appointments, and the start of school. School- for everyone! Come one! Come all!

Our household currently houses 4 occupants and 4 students. Check us out! eehhh? Right??

But most importantly, our dear Natalie began the big K on Monday. This year, the school did a “soft start” where each child could pick either that Monday or Tuesday to begin class and then having Wednesday as the first day of a full class. If I heard right, I think there are about 21 students in her class. For our county’s standards that’s not too shabby.

But again MOST importantly, how did she do?

Fantastically! That’s how. She had a quick moment this morning where she asked, “Mommy, do I really have to go to school today? I’m so tired.” I think we all understand the exhaustion in that question. Her brother, who is in 1st grade, asked that question quite a few times during his entire kindergarten year. I’m kind of shocked that she waited to ask all the way on a Friday morning. Tuesday was usually her brother’s day to ask me that question.

The school has been pretty awesome about keeping the teachers in the loop about Natalie’s health plan. In fact, that’s another shocker for me, because I’m so new to this whole kid-in-school-all-day-with-heart-condition-thing. Brand new. She had a year of preschool but by the time I got home from dropping her off it was time to pick her up. And that was only 3-4 days a week. This time, it’s real. Like for real, for real. The school has been very good about taking care of Natalie so far. The only small issue we’ve had was some heat exhaustion the other day, but even I failed to see how hot it really was outside. Throw into the mix 3 recesses (2 of which I didn’t know about) and well, you get a little bit of heat exhaustion. She fell ill by the end of Wednesday, but once I pumped her full of even more water and a snack she was feeling normal again. The school didn’t do anything wrong. They kept supplying her with water and she kept downing it. When her teacher would ask, “Natalie are you okay?” several times, Natalie (just like her mom) would brush it off and just say “I’m fine”. She even looked fine, until we started our walk home.

Now we know to cut her recess time down a little bit on hot days. The 3rd recess is being dropped off soon so that won’t matter. It’s the lunch recess that’s triggering, I think, the biggest problem. For days like today, where the heat is just too much, Natalie will get to spend it inside either with the teacher or at the office, reading, coloring, and hamming it up with the faculty.

Wanna see some photos? Oh you know that’s why you’re here:

Natalie with her big brother! I really need to compare these 2 to last years’ photos. My god.

And there they go… off to new adventures.. off to experience the school life. A life of slightly crappy school lunches, optimistic dread, the sound of bells, the smell of pencils, glue sticks, and copied paper. Just like last year, the new students have the “deer caught in headlights” look. Natalie was smiling and then waved after I took this photo. Ham. Pure ham.

on ignorance.

One of my biggest pet peeves when it comes to anything in life would be ignorance. And I don’t mean the “girl, you are so ignorant” kind of ignorant. I grew up using it that way and suddenly realized one day that it doesn’t mean “rude”. I mean the total lack of knowledge about something especially when it comes to the whole gigantic world of medical-type people. More specifically, the ones who have been poking, prodding, and eye-balling my heart kiddo for going on 3 years now. The ones who still gawk at her beautifully set chest zipper and drainage scars and then with total shock ask, “why does she have THOSE scars??”


We’ve been going to the exact same pediatrician for 3 very full years now. We have no other choices of doctors in our area right now, so for a little bit longer, we’re stuck. The doctor who is (technically) supposed to be the “special needs” doc isn’t always at her practice. In fact, she hardly ever is. And we were very lucky and happy to have her perform Natalie’s most recent June well checkup. Talk about catching up on so much lost time. It had been about 2 years since we had seen her last. So those last 2 well checkups were spent with nurses, doctors, gosh whoever they are because there are so many. And to be totally honest here, I’m (technically) fine with anyone seeing Natalie as long as it’s a checkup and I feel like they’re thorough enough. Hey a chart is a chart. As long as it’s all charted I’m good. Problem is, the office is still playing digital catch up which has probably beat the world’s longest record for transitioning from paper to ones and zeros.

So we’ve had medical professionals take not a quick second to know who Natalie is before they meet her. They have ignorantly started a checkup with a child who they didn’t bother to read about before slapping those blue gloves on their hands. The front desk people know exactly who Natalie is! The nurse who administers vaccines does, too and they all are like in love with Natalie because they know how far she’s come. They’ve seen her in her highs and lows and everything in between.

But when a doctor who has met Natalie before asks “why does she have THOSE scars??” again, I’m going to just say that I had no idea that she had scars OMG! That’ll get a good rise out of ’em.