Ten Things I Hate About You

Before we were introduced, I hadn’t really had any real drama in my life. The biggest thing I had to worry about was what we were going to have for tea, or whether I’d overindulged too much to fit into that dress at the weekend. And then you came along, and everything changed. Everything. And even when we met, i didn’t appreciate the impact you would have on my life, and everyone in it. Because what at first seemed like something that would have an effect on just one of my family, very soon demonstrated that it’s effects were more far-reaching than the immediate victim. Your tentacles reached across to touch all of my dear little family, and slithered into every part of my life. And whilst I try hard not to forget the good that came from meeting you, I refuse to accept that you gave those gifts to me. You did not effect those positive changes – those changes came from the strength that I managed to produce in spite of you, not because of you. And so let me tell you, Kawasaki Disease, all the things I hate about you.

I hate that you stole perfect from me. Because that is what you did. You stole the most perfect joy I had ever felt in my life up to the point that my daughter was born. When I look back now to those blissful weeks with my newborn baby, they are over-shadowed by the unseen threat of you. When I look at the few photographs I have of those precious weeks, I can recall the pure contentment that I felt whilst I drank in every inch of my perfect little girl. But there’s something else now when I look back as I find myself searching for signs of your appearance; how long had you been lurking, waiting to make your presence felt? Days? Weeks? Not months, as you made your entrance when Freya was just 7 weeks old, and took my perfect from me before I had even had the chance to accept that this was my life. I hate you for that.

I hate you for the damage that you caused, to my little girls heart and my own. Your physical attack on my daughters body caused damage that has since repaired to spite you, though we will never know what lies around the corner as you sneer at us from afar. The effects of the emotional and psychological onslaught that you raged upon me went far deeper than any physical impact you created. Far deeper and perhaps more permanent still. Anxiety is one of the gifts you bestowed upon me, and sadly you declined to accept returns.

I hate that you took me away from my family, particularly my son. I hate that your presence resulted in my absence and caused a fissure in relationships that, theee years on, we are still fighting to mend. I hate that you created mistrust in me, from those who trusted me the most, because my attempts to protect them from what you were doing to our little Freya were seen as dishonest and insincere. Because of you my children learned that sometimes parents lie. And you can sugar coat it as a white lie if you want to, but to a boy of 5 who is just adjusting to not being the most important one any more, a lie is a lie. You have no idea how much damage that has done to a vulnerable little boy who trusted his mother the most in the whole wide world. For that, I will always hate you.

I hate that you made me afraid. Afraid of life, afraid of death. Your ego will tell you that you taught me not to take life for granted, and maybe there is some merit in that. But you took away my innocent enjoyment of a life and replaced it with a life where I am constantly looking over my shoulder, wondering when time may run out for me or any member of my family. You can tell yourself that the fear of losing them has made me love them more, and that might be a little true, but mostly that fear has made me edgy and anxious and sad, and those feelings threaten any chance I had at savouring every uncertain second that we have on this Earth. I hate that you gave me that.

I hate that you show up, mess up and leave. The lucky ones manage to avoid any long term damage you try to cause, but there are still so many who are permanently impacted by your arrival. Less lucky ones might face an uncertain future with broken hearts, but at least they get a life.

But worse than that, you are too often allowed to take a life too young to be taken, and for that I hate you. I hate that we don’t know who you are, what you are, where you come from, or how to get rid of you. You are not welcome, and yet you show up anyway. The lives that you rudely interrupt are forever changed by you, but you don’t change. You just move onto your next victim, sending another family into turmoil and uncertainty and fear. I hate that we haven’t stopped you yet.

Out of the mouths of babes

Sometimes I forget that Freya’s diagnosis didn’t just happen to her, and me.  It’s like I’m caught up in this kawabubble where my thoughts and feelings about what happened to her are all-consuming, and I have to remind myself that I am not the only person affected by Kawasaki Disease. It sent my whole world into an uncomfortable darkness; a darkness that enveloped not only me, but my husband and children and the wider family.

I think I did a pretty good job of protecting my children from what was happening to their baby sister.  They had already gone through a massive change in their environment when we brought Freya into the world, and suddenly Eliza (11) wasn’t the only girl and Finlay (6) wasn’t the baby anymore.  They handled the introduction of a fifth family member pretty well, and with just the right amount of balance.  Let’s face it, newborn babies can be pretty boring and when both kids realised that there was very little they could do to interact they soon got bored and went about their own business; Eliza up in her room listening to music and making make-over videos, and Finlay with his head stuck in Minecraft on my iPad.  They showed a little interest, but their mum was constantly feeding or changing the baby so there wasn’t much for them to do.  That said, it must have come as a huge shock to them when after just 7 weeks with a new baby sister in the home, she was taken from them, and with her went their mum.

When Freya became ill on Sunday 31st May 2015, we played it down and explained that because Freya was so young we weren’t able to give her any medicine, so we had to take her to the doctors to see what they could do about her temperature.  We said she had a cold, and in all honesty we thought that might be just what she had.  I don’t remember what time we were finally admitted to the children’s ward but I imagine the kids were in bed by the time their Dad got home so he was spared any explanations after a stressful and upsetting afternoon in A&E.  I’m not sure what was said to them the following morning, but Gavin had to leave them before they awoke as I had called him at around 6am to tell him he needed to come to the hospital.  Freya had taken a turn for the worst and had been rushed to the high dependency unit.  Luckily we have a great support network and it just so happened that my mum had come to stay with us for a visit so there was no need to wake the kids when my husband left.  We continued with the story that Freya had a bad cold, but that the medicine she needed had to be given to her at the doctors. I remember my daughter asking where Freya was going to sleep at the Doctors, so I guess then we told her that we really meant she was in the hospital.

On the Tuesday, Eliza was going on a school residential trip to Northumberland for 4 days, which in some ways was good as it relieved some of the pressure for us for a few days.  Finlay hadn’t asked any questions and was unlikely to, but Eliza is more astute and we couldn’t have kidded her for long.  I knew I had to present a brave face for her to be able to go off happily on her school trip and not worry about her little sister. We were not allowed contact with her while she was away, so again we were able to avoid any questions.  I remember she was quite upset on the Monday as she was worried about packing her bags without my help, and I had promised to see her off the next morning.  I nipped home with a heavy heart on the Monday evening to help her pack, and raced back to the hospital.  On the Tuesday morning, one of the family came over to sit with Freya in the HDU so that I could leave to be home with Eliza as she prepared for her trip, then my husband and I took her to school and waited to see her off on the coach. Every inch of me wanted to be back in the hospital with Freya. At that point her condition was pretty critical and I couldn’t shake the feeling that if something happened when I was away from her I would never forgive myself.  And so I went through the motions of being a caring mum, excitedly waving off my child on a school trip.  I remember staying as far away from the other parents as I could; I wasn’t strong enough to engage in conversation.  At that point no-one even knew that Freya was poorly.  People kept coming over to us and asking us how Freya was, how we were settling in with a new baby, were we getting any sleep; the usual newborn banter.  One person asked where she was and my husband replied that she was with his mum (not a lie), and they responded with “Don’t be getting too used to that!”  If only they had known, at that point the notion of getting used to a life without her seemed very probable.

I had to move into the crowd of parents once my daughter was on the coach so that she could see me and I could wave her off.  One mum gave me a little nudge and asked if I was ok.  I tried to shrug it off, but she pushed again.  She knew that I had suffered with post-natal depression with my first child and was worried that I might be struggling again.  And then the tears came, and I told her that Freya was in hospital being treated for suspected bacterial meningitis.  Another mum touched me on the shoulder and kindly said to turn around, as Eliza was looking out of the window, so I wiped my tears, painted on the biggest smile I could muster and waved and blew kisses like I should.  When Eliza returned from the trip days later she made fun of me; “And you said you weren’t going to miss me, you were the only mum that was crying, haha!”  I’ve never corrected her; I was happy for her to keep that illusion.

I didn’t see either of the children for the rest of that week.  Finlay didn’t ask any questions, other than the odd “When’s mum coming home?” or “Where’s the iPad?” but his behaviour at school took a bit of a nosedive.  Fin can be a challenge at the best of times, but it was the first week back at school after the holiday and he was clearly unsettled.  On the Sunday (Day 8) we felt it was time to let the kids come and visit their baby sister in the hospital.  By then the cannula in Freya’s head had been removed, which made her look a little less scary, and the Ward Sister had been doing everything she could to help us try to get Freya back to feeding normally, and off the IV fluids.   I had been home on the Saturday night and left my husband in the hospital; I needed a good night’s rest.  On the way over to the hospital I tried my best to prepare the kids for what they were about to see.  I asked Fin to tell me how he thought Freya might look, and he said she would look poorly, and pale and probably tired.  I described the room to them, and explained that every room was fully equipped for all eventualities, and not all of the equipment was there for Freya.  When the children arrived, Freya still had cannulae in her wrists, and a feeding tube in her nose, but we played it down, focussing Fin on how cool it must be not to have to bother to eat and just get food poured down a tube straight into your tummy. I don’t remember Finlay having much to say when he saw Freya.  He had spied the play area opposite our cubicle and was distracted by the Playstation.  I was glad for the distraction.  Eliza seemed more affected by the situation, and sat quietly with her grandparents on the sofa most of the time.  It was that morning that a consultant came to see us to advise of the transfer to Sheffield. He said we had been there long enough without a diagnosis and had it been his child he would not be satisfied.  Our efforts to play the situation down were scuppered when a nurse entered the room to tell us that an ambulance was on its way.  I remember seeing Eliza’s face full of panic and confusion.  Why were we going in an ambulance? Why were we moving to another hospital?  I reassured her that we weren’t allowed to drive Freya ourselves whilst she was an inpatient, and that we were moving because Sheffield had all the medicines there that Freya needed.  She seemed satisfied.  Looking back, I think I underestimated her.

We kept the visits from the children to a minimum over the 6 weeks we were in the hospital.  They visited less than a handful of times in total; once in Doncaster and a few times in Sheffield.  They didn’t come to Leeds.  Once my mother in law came over and sat with Freya for the afternoon whilst my husband and I took the kids to the museum across the road from Sheffield Children’s Hospital.  It was our attempt at a bit of normality, and it worked if only for a short while.  Whenever they visited, Eliza would become upset when it was time for her to go.  She’d ask if she could stay with us, but that wasn’t possible or appropriate.  It had been a pretty significant time for Eliza; she had recently had her SATS, it was her junior school graduation and she worried I wouldn’t be there (I was), and she would be starting a whole new chapter at Secondary School after the Summer Holidays.  This was a lot for her sensitive soul to deal with on top of all that.

All in all, I think we did a pretty good job of protecting the kids from the seriousness of the situation.  We didn’t feel that either of them needed to be frightened for their sister’s life.  Although Finlay didn’t say much to us about it, other than “Is she better now?” which we answered in the affirmative, I was told by one of his teachers that he had been quite excited one Friday at the thought of me coming home, saying “My mummy is coming home tomorrow because she wants to spend some time with me now.”  Funny how a 6-year old mind works; in his small view of the world his mummy had 3 children, but had chosen to spend her time with another and not him.  His behaviour settled down once we were back home, and things started to return to something close to ‘normal’.

It was a tough Summer holidays for both kids really.  With Freya’s immunity shot to pieces, we couldn’t do any of the things we might normally have done, or the things we had planned and promised to do.  There were times when Eliza would seem frustrated that we couldn’t go on holiday or have friends round like we might have done.  But she’s not a spoilt kid, so I know she didn’t mean any malice.  I had never asked Eliza how she felt about the situation; I guess I didn’t want to put her on the spot in case she hadn’t felt anything much at all.  I saw a glimpse of how this has affected her the day before she started her new school.  She came downstairs to say goodnight and I noticed a friendship bracelet on her wrist.  I told her she would need to remove it as the school had a strict policy on jewellery.  She couldn’t remove it, she said, it was a wishing bracelet.  A friend had bought it for her for her birthday a couple of weeks before.  You have to tie it on and make a wish, and only when it has unravelled will the wish come true.  We argued for a little while and she ran upstairs crying.  Then it hit me. I followed her up and said “So come on, tell me.  You’ve either wished for a puppy or it’s something to do with Freya.”  Tears rolled down her cheeks as she told me that she had wished for Freya to get better, and if she took the bracelet off her wish wouldn’t come true.  I said “Freya is better”, and she answered “No, I mean really better.” (by this time she was aware of the complications with Freya’s heart, but only to the extent of “the illness has made Freya’s heart a bit poorly”).  I held her in my arms and told her that no wish was going to make Freya better.  She was getting better every day, and would continue to get better because she was receiving the right medication, regular follow-up and had a family that loved her.  I said that if anything were to happen to Freya it would have nothing to do with that bracelet, and managed to pull it off over Eliza’s hand in tact.

On Friday last week, I sent an e-mail to our local press to ask them for their support in promoting the change.org petition.  A reporter called me that afternoon and interviewed me over the phone as they are interested in running a story about Freya.  During the conversation the reporter said, “You said you have other children?  How have they coped with all of this?” and I answered that they had been very level-headed about it and did not seem affected by it at all.  And then I realised that I couldn’t really say that for sure as I had never asked them.  Well, I don’t think I would ask Fin, but I wondered if I should ask Eliza.  So after the interview, I put the phone down and asked Eliza how she had felt when her sister was in the hospital.

“I knew something wasn’t right, I mean she was in there for ages and she had all those tubes and machines and things.  And you were there with her all the time.  She must have been really poorly.  And then I…I can’t say this to you…”  I urged her to go on.  “I thought only one of you would be coming home.”

I don’t know if how I handled this was right or wrong.  Is there a right or wrong way to deal with something like this?  Or do you just do whatever feels right in your heart at the time?  I do not regret keeping the majority of Freya’s story from my children.  What I do regret is underestimating the impact that losing their mum and their baby sister for 6 weeks had on them, and not giving my daughter credit for her intuition and intelligence.  Had I known, I would have invested more time with her during mine and Freya’s ‘incarceration’.  We did have one special day – graduation dress shopping and lunch at a nearby shopping centre one Sunday.  And whilst practically every inch of me yearned to be back with my Peanut, this smile on this face was worth every second I was away from the hospital…