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…


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