Freya’s Story (21)

So, tonight’s blog will bring us to the ‘end’ of Freya’s Story to the point that we left the hospital.  After we were discharged, I wrote only two more entries in the journal that my sister-in-law (and best friend) had bought me.  In the hospital, writing in my journal became part of my daily routine, and once I had settled Freya to sleep at night I would get ready for bed and lie down and write whatever came out on the page before eventually settling off to sleep myself.  Once we were home, the routine changed.  I was no longer alone at night with nothing but my thoughts, a pen and a book.  And then I made the decision that Freya’s story was one that should be shared.

During our time in hospital we said very little about Freya’s illness.  I had already retreated from social media about a week before she became ill, and it took a while for people to notice my absence.  That’s when the messages started; people asking me if everything was ok, they’d missed my daily updates or pictures of the baby.  I was so confused about what to share.  We hadn’t even told our all of our family what was happening.  We had told our other children that Freya had a bad cold and that because she was too young for our medicine she had to be treated in the hospital. Fin showed his concern for all of 5 minutes before he asked if that meant he wouldn’t get to play Minecraft on my iPad for a while.  Eliza, being the eldest, was more aware that something wasn’t quite right but seemed to buy our explanation.  Luckily she was away on a school residential trip for the first week of Freya’s illness and didn’t get to see me or Freya at our lowest.  By the time people’s suspicions were roused, we had received a diagnosis.  I answered a few of the messages, and when there was good news I would deliberately send a message with an update, but then the next day I would be asked how Freya was doing and the picture would have changed so dramatically that it became too much.  In the end, I decided that my husband and I needed a ‘back story’. One that would inform people of the extent of Freya’s illness without giving it a name, and asking that we be left alone to come to terms with what was happening to us.

Even towards the end of Freya’s time in hospital I decided that I didn’t want people to know about the coronary complications.  I was afraid of people’s pity, of people looking at Freya with sadness, or of being judged by our actions with “that little girl with the heart condition.”  I didn’t want my children to find out that their sister had a potentially life-threatening condition, and felt that we needed to contain the information as much as possible to protect them.  And I wanted to protect Freya too.  There would be a time when we needed to tell her about her condition, and I wanted that to come from us when the time was right.  But as we started to truly understand the illness, and it became clear just how little is known about Kawasaki Disease in this country, I felt we had something to give.  So I sat down with my husband and told him that I wanted to blog Freya’s Story, to raise awareness of this disease.  I wanted people to understand what we had been through so they could stop asking questions, stop telling us how pleased they were that Freya was “better” now that she was out of the hospital.  I wanted to share thoughts and feelings that I find easy to put in words, so that other parents suffering who may not be able to articulate their feelings could see they were not alone.  And I felt if even one child received a correct and timely diagnosis and one parent could be spared the agony we went through by raising awareness, then we had a good reason to put Freya’s journey out there.

And so, I’ve nearly caught up on the events of the last few months so I will share the last few entries and then a new chapter can begin.  Freya’s condition has improved greatly since we left the hospital.  She continues to have regular cardiology checks and is likely to be on aspirin for life.  But Freya’s life will not be defined by this damned awful disease.  She will beat it, and we will tell her one day about this horrible illness she had when she was a baby that had us all terribly worried about her for a while, and we will laugh as we watch her take on the world with that smile and those huge blue eyes!

Today hasn’t been a great day for me.  It started badly when I called Freya’s Doctor’s Surgery to cancel the appointment I had made to catch up her routine vaccinations.  The uncertainty surrounding Freya’s immunity and the lack of concrete advice on whether to immunise or not has brought a lot of confusing feelings back to the fore and I felt rather lost again.  On days like this there is only one person that can truly understand what I am feeling, and she is a complete stranger to me.  But our lives are so inextricably linked through our experiences as both of our tiny babies face their own battles with Kawasaki Disease, that it doesn’t feel right to call her a ‘stranger’.  Strange maybe (!), but stranger? No. She is a voice of reason in the lines of a text, and despite being a few steps behind us in her own journey manages to find the words to make me feel like Freya’s Story could just have a happy ending.  I believed it once, and I will believe it again:

Wednesday 8th July 2015, 14:47pm (Day 39, Discharge Day)

“…You truly are amazing, a little superstar, and I will forever be in awe of you…There will always be an element of uncertainty around how this illness will affect your future, and I hate to get too ahead of myself for fear of jinxing the positive steps you have made, but right now I feel like you have kicked Kawasaki’s butt and there is nothing that can stop you my darling.  You are here in this world for a reason, and I can only pray that you beat all the obstacles you may be faced with, and I look forward to seeing what you will make of this life of yours.  Make a difference, sweetheart…Imagine what you could achieve with just an ounce of the resilience, strength and love that we have seen from you in these first 12 weeks of your life.  There will never be enough words to express my admiration for you.”

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