Another year

Conversation between Jilly and I the other day:

Me: Jilly, you are absolutely awesome. How did you get to be so awesome?

Jilly: Ummm, you mom, duh. You made me awesome. Except for my broken heart. You didn't know about that.

So another year has passed, very uneventful I must say in regards to Jillian and her health. It's almost been a year since her catheter, stent and coils.

Another year behind us that has allowed her sphere to widen, her experiences to grow, her awareness of the world around her to grow.

My posts get fewer and farther between, as pointed out by my husband the other night. I thought about why I have fewer and fewer things to say. I think it is because the pain isn't as raw anymore. Oh, it's still there. But I guess I'm just not feeling as exposed with open wounds that I was trying to find some salve for. The wounds seem to have a scab on them - at times that scab comes off and I work hard to not pick at it and let it heal again.

And heal it does. Not completely. I don't think it will ever heal completely because there is always, always that awareness that the other shoe will drop. It could be tomorrow or 20 years from now, but that awareness that she is not healed is always there.

I do a pretty decent job of not obsessing on all the what ifs. Especially as time creeps by and she continues to do so well. But the occassional doubt drifts in. The times I look at her and am just completely blown away by the fact that she is sitting here with me. Wondering where her life is leading us.

I guess I don't have as much to say as the mom of a Fontan patient because there just isn't a lot to say. She's alive, she's doing well. She's growing, thriving, happy.

But maybe for those of you who are a few years behind us in terms of treatment, recovery, etc hearing that Jillian's life post Fontan is uneventful is comforting. I hope so.

I do know that as a mom of a child with a Fontan I feel as though I walk a slippery slope in learning how to help her, and myself, navigate life as a child with CHD. Especially as her awareness of how it affects her grows. As her awareness of how it might make her different from other kids grows. And helping her deal with her frustration in any of those limitations.

As a matter of fact we just had a conversation about her scar. She reminded me how during 1st grade she had a period of time that she became the recess side-show. I don't dress Jilly to hide her scar. I don't want her to be ashamed or embarrassed. It is a part of her and I want her to not be self conscious about it. So obviously, since her scar comes up so high it's easy to see. The kids would come up to her and ask her to show them her scar. She would oblige, because it made her the center of attention. One little girl in particular would clap her hands and say "again, again" so Jilly would pull her shirt down to expose her scar. Her bringing this up again allowed us to have a conversation on her feelings regarding her scar and the attention that it gets her, the stares, the looks of pity from people - ok, maybe that's my awareness more than hers. But she had some definite opinions now as a big 7 year old. We were able to discuss how her scar is hers and if people are curious that is ok, but she doesn't have to show them if she doesn't want to and she doesn't have to talk about it if she doesn't feel like it.

Her limitations are few at this point. The main concerns have been her speech and gross motor skill development. And then of course all the unknowns of what might be going on inside that little body of hers.

But it doesn't stop me from worrying. I feel that I am always two steps ahead thinking about how certain activities might need to be modified. How to communicate those modifications to others. Like in karate. She has moved up a belt. For now there is no contact. But of course I am already two steps ahead as I watch the kids just a few belts away from her are grappling on the mat, elbows being pushed into chests. Wondering how I will reign in my protective side and let her figure these things out on her own, communicate her own needs.

Or this week when I broke out the pulseoximeter machine to measure her oxygen because she's had a cough and has been winded. First time I have had it out since I can't remember when. Then got worried when she was only at 93. I immediately put that thing back in hiding. Causes to much anxiety.

Or when I know that she needs to exercise those legs because of the passive blood flow and the fact that because of so many procedures her artery in one leg is narrowed. Which restricts blood flow. Which in turn makes her legs tired. And the treatment for that is to make her exercise her legs and to be active. But she whines and complains that she is tiiiiireeeed and her legs are tiiiiireeeed and she doesn't want to dance, run, walk (she will when she wants to, just not always when I want her to). So I have to continually push her to be active or otherwise she would be content to become one with the couch and watch t.v. all day long.

Four years post-Fontan - life is good. Her doctor is easing me in to accepting that it is so good he only wants to see her once a year. My anxious side asks, "are you sure, is that a good idea, wonder if there is something serious going on in there?" But the rational side of me knows this is a very good thing. A sign of continued progress.

Just as a lack of things to say is a good sign. A sign that Jilly is doing fabulous and maybe I'm doing ok too.

And just as I told Jillian this morning when she woke up grumpy "every day that we wake up is a great day!"

And it is.