Freya’s Story (6)

I’ve not written for a couple of days as I’ve been busy with my family, keeping a promise I made to myself and to Freya to make our time here count.  It was my son’s 6th birthday on Friday, so this weekend he has taken the limelight, and Freya had to take a backseat for a few days.  I’m not sure she liked being back there much, but no matter what she has been through or what she has to come she is going to have to learn to share the people in her life sometimes.

I left you on the 10th June, where I had returned home from the hospital for some rest.  Rest that I didn’t get as I knew Freya had a big day to come.

Thursday 11th June 2015, 13:31pm

“…I didn’t sleep very well last night.  I guess I was kidding myself that I would rest well at home when I knew what was coming today.  I set off from home at 7:30am to make sure I was at the hospital in time.  Daddy looked shattered bless him!  He had slept in his clothes so he looked all crumpled!  You had a temperature again, so you’d just had some paracetamol…You were pretty grumpy because you weren’t allowed to have any milk after 2am.  I was so pleased to see you.  When I am away from you it feels like I have a little hole in my heart and I find it hard to breathe…As soon as I have you back in my arms I feel whole again.

At 10 o’clock the nurses came to take us to theatre.  You had to wear a little surgical gown – it was tiny, but still too big for you…When we reached the theatre wing the staff gave Daddy a buzzer [to let us know when you were awake], and I went with you into the theatre.  There were lots of people there.  They laid you on the operating table.  You looked so tiny.  I wondered how many lives {might have been] saved on that table.  I sat with you when they injected the anaesthetic.  It was one of the worst experiences I have ever had, watching you fight the anaesthetic until seconds later it took you off to sleep.   Your eyes didn’t close fully.  I cried.  I had to leave then, so I kissed your forehead and went with Daddy…and sat in the park opposite the hospital.  I can’t tell you how long that hour seemed to take.  Eventually the buzzer went off and they took us to get you.  You were fine; you had woken up…”

At around 4pm the haematologist came to deliver some good news.  Freya’s bone marrow aspirate showed no immediate cause for concern.  Freya’s cells appeared healthy and there was no sign of the ‘C’ word.  Again this was considered a sign that we were dealing with an infection caused by a virus and that Freya’s red blood cell production had been temporarily halted by the illness.

“…The Rheumatology consultant has also been to see you, and although he has asked for some more tests (heart scan tomorrow), he also feels that this is more likely to be an infection…Today has gone a long way toward helping mend my broken heart.”   

I wrote one last entry that night before going to sleep:

“Do you know little princess, I think you were sent to me to teach me a few things about how to live this life.  Looking back to the challenges I went through when I discovered that you were coming into this world, I can’t help but think that you are a little miracle.  Perhaps the soul that was looking for a body had been watching over me and saw how troubled I was, saw that much of this wonderful life was passing me by whilst I focussed on the very worst that could happen.  So it chose you, and me.  I’ve learned that you can’t always have a plan.  That sometimes there is joy in the unexpected, and…contentment from just letting life take it’s own course and not the one you meticulously carve out.  Life isn’t always about the big bang moments; sometimes it is the smallest events…that leave the most lasting impression on you.  Things happen for a reason, I truly believe that.  That’s the first lesson you taught me – let go, forgive, forget, see the beauty and freedom in a life without a pre-determined course.

I’ve got a feeling that this experience right now may well be the second lesson you have for me.  Twelve days into a hospital stay and you have some of the best of our medical profession stumped!  Haematologists, Rheumatologists, Immunologists – none of them can find an answer.  Because maybe there isn’t one.  I have a hunch that you are going to get well very soon, and we will be leaving this hospital without any diagnosis.  And it won’t matter, because you will be well and the family will be complete again.  I will have you home, and my heart will be mended because maybe it is okay for there not to always be an answer or a reason.”

Reading those last journal paragraphs for the first time since I wrote on those pages in the hospital, I feel like I’ve been punched in the chest, and tears that I had managed to stem flow freely again.   I thought our journey was nearing its end; I was full of hope.  I believed that as the bone marrow aspiration was the final test and there was nowhere else to look, all avenues had been exhausted and she was getting better.  I had no idea what was about to unfold the following day, or that the days ahead would be darker than anything we had endured so far.

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