Monthly Archives: September 2012

changes.

It’s been a full month of school for Natalie and she’s been doing fantastic. So fantastic that I have to document this. I am so excited to see what else she does. There have been some pretty incredible changes going on with Natalie.  She has gone through several years of physical therapy for gross motor issues but since she’s started school she has been running, even jumping! (she has never jumped off of say.. a step, since..well never) and picking up those knees like a champ! She keeps up with her big brother and classmates, too! She moves like a 5 year old now. The amount of changes in her physical abilities has skyrocketed in only a month of elementary school. There’s something about that new title of “kindergartner” that seems to be a big force for her. It was something that I never expected. I survived the first week with Natalie in school I threw all caution to the wind and sort of just let it go. I stopped worrying about her so much. I stopped comparing her to James. I stopped expecting something bad to happen. I stopped. Instead, I starting changing how my thought process was going with our new adventure…

She’s in good hands. 

Indeed this kid is. She’s in perfectly good capable hands. During her first month of school, she has endured a whole lot. And every incident, illness, and upset moment involved someone else to protect her. I won’t lie and say that a tiny part of me wanted to be there to take over the situation(s) instead. But if I keep doing that she’ll never grow up. She’ll never get to experience life away from mom’s shadow. A huge disservice to her if I immediately jump in every moment, bad or good.

For the first month of school Natalie has successfully (and supremely) handled a raging UTI (poor kid..oy), a punch to the chest by a fellow classmate, a classmate’s birthday party, a nasty cold (while taking her 1st major test of the year where she placed VERY high!!), and stomach virus. There are a few things more we can take from this..

Yes. Natalie has half of a heart and by technical standards, she is a little delicate under that skin. Her heart is without a right side, but the left side is so strong! It amazes me every single day how well she copes. I call this time of her post-Fontan life “the prime”. It really is the prime of her life in regards to how strong she really is. And I think that this prime time will last a long time. Is it okay to get a punch to the chest? Absolutely not. Thankfully, she took quite a blow but was completely fine. Phew. As a result, the parents were notified and it seems like this boy has calmed down. Kindergartners: I just don’t see how a teacher can handle 20 of ’em all at once.

2 days after the incident, I was walking Natalie to school on a nice cool morning, with James behind us. She says… “You know, my teacher told the class about my special heart. She told them to be careful with me and to never push or punch me. Then I showed them my scars.”

Luckily I was wearing sunglasses that morning to hide my tears behind them.

Totally out of the blue she tells me this. I told her how proud I was of her and I asked her how she felt about showing her scars and the teacher telling the whole class about her heart. “Pretty good” she says. Pretty good indeed Natalie. Since the incident with the chest punch, no one touches her unless it involves a hug, a tap on the head for “duck, duck, goose”, or hand holding.

Here are some more recent photos of the Queen with her brother and some very special friends at a Broncos game!! enjoy ; )

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…….