In memory of our lovely Aillidh

[expatinscotland]

At 11.25 last night, our beautiful, 9-year-old daughter died of complications from treatment for acute myeloid leukaemia, she went into respiratory failure after contracting human metapneumo virus following conditioning chemotherapy for stem cell transplant.

For many days, she lingered on a ventilator. But last night, she developed a pneumothorax and rapidly deteriorated.

She died within seconds of the ventilator being taken off.

I can't believe she's gone, or how broken her long body looked.

Expat. It's so sad and so unfair. At least you know your gorgeous daughter had the best possible care, and that You did Everything you could for her. She knows that too, I'm sure of that.

Keep posting, if it helps. We are listening. And we care hugely. Xxxx

I think of you and Ailidh every day and hope that you are all managing as best you can.

All my love Expat, I think of you and your family every day. Eventually the good memories will come to the front, you have all fought a war, and the shock and horror of it all is so strong and palpable, but the thing that is stronger is your love for Aillidh, and her strength and beauty will be the memories that come to the front over time.
My little girl died in horror in PICU, and I thought the beeps and tubes and smells would be with me forever, and they will, but I remember the softness of her lips and the curl of her ears and the length of her eyelashes now more than the horrible stuff, and in that is a little peace. You will find her again, the horror is not as strong as the love. X

Expat, the strength of you, woman, is just staggering: to know all that and YET keep going, loving your Ailidgh and being there for her, during the worst of times.
Having followed your story (quite spuriously to start with, more regularly recently), I am so glad you had/have the support of your faith.

Having said all that, I do not believe in an almighty god, but still believe that there is reward in life, in your relationships with others and in how you remain true to yourself during such hard, hard times.

I've been struggling to come up with anything half-sensible to say since your physcial description of Ailidh toeards the end . Critical illness robs us of so much. And it is true, a dead body is just a shell of the person that was once there. Don't fight the horrible memories, but equally don't give them more 'room' than they deserve: I am sure Ailidgh was laughter and cheek and new discoveries and many things more when she was well.

And as a very wise bereaved parent once said to me: go out and make new memeories when you feel able.

Love and light to you xx.

expat you were brave to ask those questions of your consultant friend, and brave of him to give you the straight answers. As was Aillidh's consultant. Yet despite everything in the world that says knowledge helps, sometimes it is also helpless. We now know far too much about hospital procedures and bureaucracy and platitudes, and all the what-ifs... but they can't bring back our beautiful girls. Knowledge might be power, but there are some forces which are more powerful, and how I hate that so much.

I'm pleased you had someone who you trust to turn to. Devestating truths at least tick a box towards understanding

Going to see her tomorrow. First time since she's been buried - it's quite far away.

Expat- far away physically.

I know you think of her all the time.

She's buried about 1.5 hours away.

Much love expat xx

Is it you and MrExpat and DD2 and DS, or just you and MrExpat?

It's all of us. We're coming through to drop my mum off at airport.

I hope the sun shines for you. Aillidh spot has a lovely view from the photos I saw on FB.

Expat, I'm wondering whether or not to post this, but I'm thinking that you don't need to go to her burial place to see her. She's all round you, with you whenever there's sunshine through a cloud, a moment of peace in a busy day. When you sit down quietly by yourself, she'll be with you. When you're having a busy day as a family, she'll be with you. When you're drifting off to sleep at night, she'll be with you, and again when you wake in the morning.

Bless you all.

I dreamed her for the first time last night. We'd all gone to a charity shop and found three of her favourite cuddlies, all washed. And I was urging DH on to buy them quickly (she's buried with two of the ones I dreamed). But Aillidh said she didn't need them and was unimpressed. She was back to how she was before she was ill.

Her illness sapped a lot of her energy.

So glad you have started to dream of her. I am sure that will be an integral part of your road to some form of peace.

There's no such thing as peace for many, even those who have never lost a child, indeed some don't even have it in death. There is only living on. Dreams are nothing but the brain trying to process information it's taken in.

Take comfort where you can. We all have so little to offer.

I'm sorry - The right words are so hard to find. I find dreaming cathartic, and spending time with loved ones, even in dreams, helps me.

{{{{hugs}}}}

I never dream of Billie well. She is always dying but happy. But I just wish I old see her well again.
I am about to put something in the post that may make you smile. But perhaps don't open it front of Ny DCs who can read :)
X

Expat - thinking of Aillidh, you and your family here. I hope your visit to see Aillidh brings some comfort, as others have said she will be with you all the time. It's difficult to know what to say but I believe that saying something is usually better than saying nothing.

Take care xx

Expat,i wish i knew what to say. Words are so inadaquate. I am still thinking of you.