Bye Bye Daddy - Talking about death when your child has a learning disability

This is the makaton sign for sad

And this is the makaton sign for Daddy

Daisy uses these signs all the time at the moment, she uses them a lot when people come to the house because she wants to tell them about daddy.

She also uses her voice , at least 100 times a day she says “bye bye daddy” .

Like her brothers and sister, like me, she is missing Andy and grieving for him.

When Andy was diagnosed with cancer,  we struggled with how to help Daisy understand what was happening and what was to come.  We knew that his cancer was incurable, that he would die from it but in the meantime there would be treatment that would change how he looked and would mean that he would spend a lot of time in hospital.

We have always been very open and honest with our older children, from knowing Daisy’s diagnosis and condition we shared this with them, we did not hide what was happening with her and they have been fully involved in her care, we never lied to them or made up stories about what was happening with Daisy.  Therefore we had to do the same about Andy, we were very upfront about his diagnosis and prognosis, we didn’t need to go into massive details unless they asked but gave them the facts, reassured them but we did not give them false hope.

But how were we going to manage things with Daisy?  Daisy’s learning disability, like every facet of her life is complicated.  She is actually cognitively very able, prior to the advent of epilepsy, she was even more so.  Her receptive skills are very good, she understands what is happening, her issues are with her communicative skills, she does not have the means to fully communicate to us how she feels. 

Our role has always been to interpret her feelings, help her communicate, speak on her behalf.  Be her voice.

We took advice from the counsellors at Daisy's hospice who advised us to be equally open and honest with Daisy without overburdening her with worrying detail or talking too much about prognosis.  We spoke to her about Daddy having a bad tummy, how the doctors would give him medicines to help him feel better, that he would need a wiggly (hickman line) like her, that maybe he might need a bag (stoma bag) too.

We did not whisper the word “cancer “ in hushed tones or use code words. 

As the weeks and months went on Daisy took great amusement from the boot being on the other foot – Daddy losing his hair, Daddy going to hospital, Daddy having medicines, Daddy having a wiggly (hickman line) for special medicines…

But then we got to the point that it was clear that Andy was not going to get better, when the cancer infiltrated his liver and all care became palliative.  What to tell Daisy then?  How do you tell your child with a learning disability that Daddy is not going to get better, despite her constant hopeful questioning “Daddy better?”, how do you tell her that daddy is dying?

I asked friends who have children with a learning disability, I asked a friend who also had stage 4 cancer and a grown up son with a learning disability for advice, we asked our hospice team and we used our instincts as Daisy's parents.

We started to introduce the idea that sometimes people are broken, sometimes the doctors can’t fix things, we reassured Daisy that in her case the doctors had been good at fixing things (she had not long come home following another epic 8 hour surgery and once again had survived against the odds), but Daddy’s doctors were not sure if they could fix him now.

We also decided not to hide her from the reality of the situation, one Sunday afternoon, as we were sitting at home, Andy was in considerable pain and vomiting, Daisy was in the room, I did not move her away, I needed her to see how poorly Daddy was, I needed her to know that we were being honest with her when we said that Daddy was broken.

We could all see how Andy was changing, becoming very jaundiced, vomiting a lot, bloated from steroids, we owed it to Daisy and the rest of the children to acknowledge what was happening, not to pretend that everything was going to be alright without frightening them .  In many ways helping Daisy to understand what was happening was no different to helping the other children understand, we just had to use the best communication channels for her needs.

When Andy was dying  he could not speak much but there were two things he was very clear on; when I was in a dilemma about whether to bring Daisy into the room he said “no” very clearly, when Daisy was leaving the house to go to the hospice as he was nearing the end, I threw the door to the bedroom open and told Daisy to shout bye bye to Daddy and he gathered all his strength to lift his hand and say goodbye to her, it was the last time he spoke.  Half an hour after Daisy had left the house, Andy took his last breath.  The older children decided not to be in the room at the end, but they had no fear about him dying in the house or even living in a house where their father had died, in fact I think it gives them comfort, as it does me.

My next challenge was to tell Daisy.  I went to the hospice the next  day, cuddled into bed with her and told her that I had sad news to tell her.  She knew straight away what that meant, she was anticipating it.  We talked about Daddy and she signed sad, we looked at happy pictures of times with Daddy, she said “bye bye Daddy”. 

The following week it was Daisy’s birthday, then Christmas and New year came and went in a blur as I organized Andy’s funeral and memorial, trying to hold things together for the children, putting my own grief on the backburner as I kept strong for them and the various family members who were struggling to cope.

The ritual of the memorial and funeral were important, they helped the children say goodbye and speak about what their dad meant to them.  Daisy did not come to these events, it would have been too overwhelming for her and for me  if she was there, but we needed a way for her to say her own goodbye.

Daisy released four balloons one grey Saturday in the garden of our hospice.  It is such a special place to us, it’s where we have had so many happy times.  We waved the balloons off and told Daisy that they were flying up to the stars to Daddy.

A few days later, with her hospice nurse she made a beautiful collage of her balloons flying off into space.

We have a box of pictures of Daddy, we talk about him all the time, over the next few weeks I’ll put together an album of pictures of Andy for us to look at as well.  We are trying to help Daisy find her voice and tell us how she feels.  Makaton has given her the signs she needs, “sad” is a sign she uses a lot.

 She always asks “where’s daddy” – she knows the answer, but she needs us to confirm it “Daddy’s gone, Daisy.  He died, he was broken and the doctors could not fix him, but he loved you very much.  We had such happy times with Daddy didn’t we?”

Truth is, we’re all sad, maybe we can learn a lot from Daisy, while we are all being brave and carrying on, she just comes out with it and tells us how we all feel.

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