The new dictionary

When a baby is born new words enter into the parents’ vocabulary. For us, instead of these being the names of the newest baby carriers or the most talked about method of making your baby sleep through the night, the words coming part of my every day usage were much more of a medical nature. I was suddenly having conversations about fundoplication versus peg-j and referring to my baby daughter as a “trachy” and a “tubie”.

But there were also words I knew before this journey, and which gained new meanings, new connotations. I want to share some of these with you.

Palliative

A couple days after Freya’s respiratory team told us they told us they thought her condition was life limiting a multidisciplinary professionals meeting was held.  MDTs are basically coffee meetings for doctors, getting all different disciplines involved in Freya’s care around a table and ask “what next?”.  I knew the respiratory team would be there, as would cardiology. A dietician probably made an appearance. And after the professionals had finished their planning we would be asked to hear the conclusions.

As we walked in there were two smiling ladies sitting next to the respiratory consultant “Here are the doctors from palliative care” she said.  I felt like air had been punched out of me. I was fighting tears creeping into my eyes: Palliative care is for those dying, right? End of life care.

I had a massive issue with the word palliative for ages. It felt like the professionals had already decided that Freya would only have one path, and nothing else could be done about it.

But I then got to know the team. They came to our house regularly. And not just the nurses, the consultant. If Freya got ill and was admitted to her local her palliative care consultant would pop up by bedside. She would read notes, make phone calls. Move behind the scenes.

Early on in this journey I received one the best pieces of advice I have received from a mother of a daughter with CCMS. She told me to find a doctor who would champion Freya. Who would fight for her to have the best fighting chance.  And this is what her palliative care team has done; its them who pushed for Freya to have her tracheostomy electively; they have a 24-hour line and speak to a doctor if we are worried about Freya (we called on Christmas day and they called us back in 10 minutes). I have the consultant’s mobile number and if I text her she will actually texts me back, even after 9 p.m.

So I no longer fear the word palliative.  For me it means there is this feisty bunch of people willing to fight for Freya. People who will make sure we are listened to, and that when we go home, it will be as safe as possible. We like to think that Freya will outgrow her palliative care team and get discharged in due course; but if she doesn’t knowing having a specialist team helping us through alleviates some of the anxieties and fears we have.

Hospice

Another word that has really grown on me. When I got a visit from our local children’s hospice I did burst into tears. I could not understand what these people could do for my baby. Surely we were not in the hospice territory yet?

Well, as it turns children’s hospices do a fair bit for the families. They have trained nursery nurses coming to play with Freya every week to give us parents a little break. They have family outings, siblings’ days. They have volunteers who can drive you to medical appointments (these medically complex kiddos are not great on public transport). They help you with finding out whether there is anything additional you are entitled to from the government to help you. Some bigger children’s hospices have amazing buildings with pools and playrooms where you can take your child on a holiday. I’ve even heard of families who take their children in just to have proper washing facilities, where their homes are not designed for a disabled children and where heating bills stretch the budget too far (that one made me feel very sad. And angry. And disgusted about how our society deals with its weakest.)

So I’m no longer afraid of word hospice. I know it can really bring joy to families and help them through some dark times.

It’ll take a long time / it’s very difficult / No

Time and time again I get told this. Housing will take a long time. It’s very difficult to qualify for carer hours with a baby. The computer says no.

Whereas a year ago I would have taken such answers at a face value I now ask why?  Can I have that in writing? Copy of complaints procedure please! To whom do I direct my data protection and freedom of information requests? And what was the email address of the head of your department? And the director of this service? These days as far as I’m concerned NO is just the start of negotiations.

Courage

On daily basis I am astounded about the courage of people I meet. The little people who fight so hard and who still are full of life, smiles and love. The parents who fight for best of their children whilst dealing with the scariest realities of living with a chronically ill child – the knowledge that one day they might just not make it. How do they do it? Because there is no other reasonable option. You still need to get out of bed. You will need to be a parent. Sometimes you need to fight.  I wish it wasn’t so but it is and no amount of could’ve would’ve should’ve will change it. The only way is upwards and onwards.

For me the courage comes from Freya. It’s my job to make sure she gets the best fighting chance. I try not to let fear keep me down. Once you realise that the worse possible outcome is possible, and you are no longer afraid of it, you know you can conquer anything that comes your way.

Joy

Before I had Freya, during challenging times I used to think about a verse from Iliad by Homer: “be strong saith my heart, I am a soldier, I have seen worse sights than this”. And most time this reminded me of something or other I had got through before, and it would make me feel just a little better.  This year we have been through some tough times and I’ve asked myself “have I?” And the answer has been no, I have not.  I have not seen worse sights than this.  But somehow we have all pulled through, more or less intact.

But on the reverse of despair is joy. Freya’s full of life, she is a mischievous little lady who charms everyone she meets.  We celebrate her achievements as great victories. The greatest joy I have ever felt is being her mum.  And being through what we have and knowing the path in front of us will be hard makes me as if I feel life more profoundly – whether what I feel is good or bad.  I no longer dwell over stupid shit I used to worry about – office politics or frustrations about living in a big city. I now know that none of us can predict what happens tomorrow. Sickness, disability and death can happen any of us. So enjoy the cards life has dealt you – even if they aren’t the ones you chose.

Want to find out a little bit more about paediatric palliative care? Check out the team at Great Ormond Street Hospital: http://www.gosh.org/events-and-appeals/our-campaigns-and-fundraising-appeals/louis-dundas-centre

If you want to know a bit more about what children’s hospices do have a look at ours: http://www.noahsarkhospice.org.uk

I was surprised to hear Noah’s Ark does not receive public funding. Please keep them in mind when donating. Fancy doing something for charity? Why don’t you collect some cash for them! They are amazing.

P.S. Housing update. Haringey backed down.  I met up with them in the week following my last blog entry and they suddenly agreed to pump us up to the highest housing need band – band a.  Without me submitting an appeal. Or any further documents. It goes to show it’s worth fighting the good fight. I will, in due course, write about the ins and outs of the argument in hope it will help some of you still battling to get your children to a safe home from hospital, but at this point I wanted to thank you all who tweeted and emailed Haringey and all the lovely messages of support we received from you. You all rock!