Freya’s Story (24)

Today didn’t start very well.  I hate this disease, hate how it makes me feel.  I am happy, and lucky and loving life and then I’m confused and hurt and afraid all at once and it’s exhausting.  And it’s not even happening to me is it?  It’s my little Peanut who has been most affected by this disease.  Or is it?  I mean, looking at you, you wouldn’t even know that you are anything other than perfectly healthy.  I’m convinced you can’t remember being so poorly and you show no signs at all of feeling anything wrong inside your little body.  Your heart is the one that is physically broken, but mine feels broken too, in a metaphorical kind of way.

The thing with this disease is that there is so much conflicting information and advice, the prognosis differs so much with each individual’s experience, and so you feel out of control.  And for someone like me, feeling out of control isn’t good.  It drives me into a desperate search for ways to gain control, and that’s when I can become a bit obsessive – mainly in researching and reading and learning and talking.  At the moment I feel like I am nothing except for a bundle of facts and feelings about Kawasaki Disease.  I don’t know how to exist outside of this bubble.  If I’m honest, I don’t think I’m doing a very good job of existing inside of it either.

I wish I were one of those people who didn’t think so much about everything.  Over-thinking just ruins everything before it has even threatened to happen.  I’m angry at myself for promising to make this life count, and then leaving you to play in your chair while I do the ironing.  I have a constant battle going on in my head; is normal good?  Or is normal going to get in the way of making sure I don’t take you or our lives for granted? Why do I even have to think about it! I wish I could just get on and do and let everything just fall into place.  Jeez I’m drained by it all.  We had a lovely family day out yesterday, and I didn’t think about your illness once.  And today it has all come back and smacked me in the face.  I mean, you don’t actually have Kawasaki Disease anymore do you?  Kawasaki came along, hurt you badly, messed you up a bit and then left.  Only another 12 sleeps before we get to have a look at the little ‘present’ it left you with, and check out the current state of play.  You have no idea how much I want you to be a miracle.  For us to go on the 7th and the Cardiologist be amazed by the complete recovery of your heart.  You were an enigma in the hospital until they worked out what was wrong with you, be an enigma now and show them the impossible! Prove them wrong.

I know that what I am feeling is probably to be expected after our ordeal.  I guess it’s like a post-traumatic reaction, not to mention the fact that you are still a young baby and my hormones will still be all over the place.  You were 7-weeks old when you became ill.  7 weeks.  That wasn’t supposed to happen.  And I know that I should focus on the here and now, and take each day as it comes, but I haven’t been in the mood for those cliches today.  I want to though honey, believe me.  I want to marvel at how good you are, and how perfectly well you look and seem to be.  I want to focus on all the things people tell me that make perfect sense, about what you have already overcome, the treatment you have received, the ongoing improvements with each hospital follow-up.  The fact is, I’m too scared to say it out loud.  Too scared to admit that you may well have beaten this disease and that in a few years’ time we won’t even remember any of it.  Kawa-What?! I’ll say.  And then I’ll have this fleeting memory of a really bad time you had all those years ago and laugh at how scared I was.  But then I do some more research, or I read the posts on the support group pages that I’ve joined and one after the other the comments pile in, all reminding me of the long term effects that this god-awful disease can have on a child’s body.

And breathe.

So what shall I do about this mood?  I will continue to tell myself that thoughts are not facts and remind myself that the people who are posting in the support pages are looking for support, which means they must still be on their journey with KD or have a concern about their child’s health post-KD.  Which must mean that there are many other parents out there who have done their KD time, and have come out of the other side and put their ordeal well and truly behind them where it belongs.  They’re not members of the groups are they, because they too found it hard to be reminded of something they would much rather forget.

I have made what I consider to be a good ‘friend’ on this journey.  She’s my text-friend and her baby is around the same age as you were when you were diagnosed.  She is still early on in her journey, and she’s got some stuff to deal with right now that we can be lucky we didn’t have to worry about.  I was upset this morning and texted her a few times about how I was feeling.  I was sad because I’d left you alone playing on your mat while I ran around tidying and cleaning, and when I came to see you, you had fallen asleep. I felt like a terrible parent a) for leaving you, b) for missing out on an opportunity to play with you for the sake of catching up on some ironing, and c) for the fact that you were alone when you fell asleep.  She said something that made me smile through this cloud, and put things into perspective.  She said that there are mums on parenting forums at their wits end stressing because their babies won’t stop crying.  She said we’ve been “right there through everything for our babies; they know how loved they are.” And you know, she’s right.  You don’t cry much at all.  You take everything in your stride like you’ve done it 100 times before.  You don’t moan about a dirty nappy, or cry for a feed.  You tell us when you are ready for bed, and when you go up to bed, that’s it, we don’t hear a peep from you until the next morning (this morning it was after 9am!)  You are happy laying on your mat or in your chair playing, whether you have someone there to play with you or not.  And when you feel sleepy, you close your eyes and you go to sleep.  Just like that.  And when you wake?  Well! The picture here says it all.  Your Auntie just said that you may well be the happiest baby in the world.

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