Today we had a party for a very special person in our lives; my best friend, my husband’s sister. We had a fantastic time (once we had rescued the gazebo that decided to take flight in a huge gust of wind). Greek inspired al fresco dining, candles and music. A perfect way to spend a Sunday afternoon/evening. My eldest daughter said that she felt so lucky to be part of a lovely group of family and friends. The kids stayed up late, and behaved impeccably as usual. And we spent the best part of half a day with our favourite people in the world.
And then they were gone, and my husband went to bed, and I sat alone for a while in the candlelit garden. Hard not to let your thoughts wander when you are alone, and it is when I am left to my own devices that I feel the sadness creeping in. I can’t quite put my finger on what it is that I feel. It’s a kind of guilt I guess. This afternoon I truly thought of nothing else but having a fantastic time with family and friends. The drinks were flowing, the food was fabulous, and the company (as always) was just what you need to forget about past troubles. But now it is all over, I feel a sense of guilt. Like I shouldn’t have been able to enjoy myself like that after all we have been through. But life does go on doesn’t it? And Freya’s story doesn’t have to be defined by her illness? Surely it is better that her life be full of days like these, surrounded by the people that we love…
It’s surreal to think about how far we’ve come in such a short space of time. There were times when I thought our lives were over, like Freya’s illness would be our ‘new normal’. But actually we are enjoying our old normal now, and she fits right in. Is that right? Should we be carrying on as if nothing has happened? My head says “of course”, but my heart says “how can you?” I just can’t seem to wrap my head around it.
Instead of going up to bed when I had finished clearing the empty cocktail glasses, I decided to take one quick look at my Facebook page. Nothing much to report. I’d shared some pictures of a collapsed gazebo and a pretty candlelit table, and our friends had commented this or that. And then I saw in my News Feed a post from a mum who had her own battle with Kawasaki Disease and was less fortunate than us:
“In November will be the 2nd Annual 5k in honor of my son Max. I want to make a banner of kids names who have been diagnosed with KD or passed please comment their name. The banner will be placed at the race. Thank you!”
Even when I read the post, the significance of the words ‘in honor of my son Max” didn’t dawn on me. Within the last 3 hours, over 60 people have posted their children’s names. I am one of the people who posted. 59 people posted their child’s name. One had a different message to send:
“…unfortunately I feel your pain. Our boys should not have died from KD…”
And there it is again, the stark reality that Kawasaki Disease is a killer. Just as I start to put this thing behind me and believe that there is life after KD, I am reminded that there are many out there who have fallen victim to this terrible disease and not lived to share their story. I am humbled. I count my blessings that Freya seems to have beaten this illness, and that her tiny heart is slowly recovering. But I cannot reconcile myself to the fact that my baby girl was subjected to this devastating disease.
I know I should be grateful that she is here with us now, smiling and laughing and fitting in with the life that we have. I should congratulate myself for fulfilling my promise to her to make every day count, and to live life to the fullest. But that somehow feels crass when I have just read what I did. I wonder if there will ever be a time when I can just enjoy this life for what it is, and not what is has been or what it might yet be.
Friday 17th July 2015, 20:36pm (Day 48, final journal entry)
“…It’s a strange feeling that I am left with when I tell someone about your adventure. At the time I am very calm, delivering details like I could be talking about anyone. I say how much of a fighter you are, they say how strong I am, and I don’t believe a word of it…
As for my strength, I’m not convinced. I must admit I’m not as bad as I thought I would be. I’ve been comfortable with you at home, just as comfortable as I would have been had none of this happened. People have asked if I’m sleeping okay. Well, you are a perfect baby and you sleep 12 hours through the night, so sleeping isn’t an issue for me. If I’m honest (and I have not said this aloud yet) it’s waking up that I’m afraid of. The fear of waking to find you gone fills me with a dread and an emptiness that I cannot find the words to express. Most days I don’t think about it; I’ve buried those thoughts, pushed them away into a dark corner of my mind. But at times when I least expect it, these thoughts and feelings creep out of their dark corner and smack me right in the face. I don’t know where they come from or what sets them free, but they sneak up on me so fast that I can sob out loud and surprise myself with the sound. It happens most when I am holding you…That’s when my mind wanders and I receive a stark reminder that you are still broken. You are home, you’re in your chair, or on your mat sleeping, you’re napping in your moses basket. I’m changing nappies, bathing you, choosing your outfits, washing, ironing, cleaning, sterilising bottles, living normal life; but you are still broken.
I don’t know how I will ever shake the fear of losing you, or how I will ever deal with a life in which losing you is a reality. I would write how I feel, but there are no words to do this feeling justice. When your heart broke, mine broke with it.”
It has been 48 days since we left the care of the hospital and the same feelings, fear and heartache remain. How I long for the day when this is just a blip on Freya’s journey through an otherwise wonderful life.