Some days we have to change her stoma bag and catheters up to five times, ontop of all the regular interventions we have to do. Every time she settles down to play or just be a little girl we find ourselves dragging her away, inevitably to undertake another painful procedure, necessary for her to now be able to live at home with us. Can you imagine being nearly 8 years old and not being able to have a say in what is happening to you? Can you imagine if that was your child you were having to drag away from fun all the time?
Daisy has a learning disability - this means that she does many things at a slower pace than the general population, she may find it difficult to talk and relies on signing as her main form of communication but one area she does not have a problem with is her ability to understand what is being said to her. We have spell out the word catheter and hospital so we don't upset her, she knows she has a hospital stay coming up, she knows what's going to happen if her catheter comes out, she understands a huge amount more than most people really know. Only those of us who know her well - her teachers & school support staff, her siblings, her carers, Andy & myself - really know how much Daisy understands. I never talk down to her or over her, I include her in conversations and my communication with her is age appropriate - in my eyes she is just like the rest of my children when they were nearly 8, and her views should be respected.
Which is why I am so worried about the mental health impact of all of these interventions and hospitalisations and painful broken nights on Daisy. It is definitely taking it's toll and over the past few weeks, as our next impending hospitalisation looms, Daisy has been getting more and more anxious. I can imagine how she feels, over and over control is taken away from her, control of her body, her bodily functions, her ability to express her feelings. So she tries to exercise control in any way she can,sometimes by hitting out, sometimes by screaming and having tantrums. She is dreading going back into hospital and all it entails, she knows from experience there will be a lot of pain, she will be away from her home, her beloved siblings and her friends and routine in school, she's scared, angry, confused, fed up ....but she doesn't have the vocabulary to say these things.
Thank goodness for her brilliant school, Linden Lodge. I have been expressing concerns to anyone who will listen for nearly a year that we are not caring properly for Daisy's emotional well being and that any child without a learning disability would expect to have a say in what was happening to them. Sadly mainstream services such as Child and Adolescent Mental Health Services (CAMHS) or the Play Therapy service do not cater for a child who uses sign language as their main form of communication or who has a learning disability. But Daisy's teachers have worked hard to find a solution for her and last term she began a weekly session of Movement Therapy with a Movement Psychotherapist. Through her weekly sessions Daisy acts out with dolls and puppets the things that happen to her. Last week I observed some of her sessions on video - Daisy did not stop, she put gloves on and went straight for the medical box that was available and immediately undressed the dolls and administered their meds. She mimicked her beeping pump and every few minutes would stop the play to deal with this imaginary beeping feedpump. Constantly and methodically she changed the dolls nappies, pretended to hook up TPN, put the doll to bed, woke the doll up for medicine. She showed no emotional engagement to the doll, she was just clinical and methodical. Chatting it through with her therapist after it is increasingly obvious that despite her learning disability Daisy is very very aware of what is happening to her but clearly does not feel included in the preparations before a procedure and has bad memories of what has happened to her previously, she is anxious and fearful and wants to be consulted and involved.
So I've been thinking about all the things that are going to happen to Daisy soon and how to prepare her and care for her emotional and mental well being as well as her physical well being. Over the course of the next few months, having had a lovely long run at home and school, Daisy will once again return to Great Ormond Street (hopefully now on a newly negotiated date of November 9th) to have another huge surgery. She will wake up with stitches and more tubes, attached to machines and be in a lot of pain, once she is over this surgery, which could take many weeks, she will then probably have to return for neurosurgery on her spine which will involve more pain. She knows when we go through the doors of the hospital what is coming but her experience over and over has been the same, one of pain, separation from the people and things she loves and being out of control. So how can I make it better for her? The first thing I need to ensure is that everyone acknowledges that Daisy is scared and respects her feelings and emotions about this. We are working with the school to develop some picture books to talk through going to hospital and what she will see, how she will feel. I am also going to put a big sign over her bed reminding doctors and nurses to ask Daisy if it's OK and not to talk about her as if she was not in the room. I wish I could detach myself from the many daily interventions we have to undertake and just be Daisy's mum, but it's a catch 22 - if we don't take on the role of home nurse then Daisy would have to be in hospital, so to keep her at home we have to put her through procedures that we don't enjoy undertaking.
What I have realised however in my need to get things over quicklyis that I have not prepared Daisy as well as I could have done for what is about to happen, or involved her. For the past few weeks, when I have needed to change a stoma bag, or catheter or line dressing we've chatted about what is going to happen and how she is going to feel, I have given her something to do like hold the gauze swabs for a stoma bag change or the empty dressing packets for a line change - anything to help her feel involved. Over the past few months I have also been taking the lead from some of my other "Special" mum friends and when Daisy is in hospital I have refused to participate in holding her down for procedures such as cannulas, instead preferring to return to the room to comfort and reassure her when it is all over so that I am not always associated with the negative experience (believe me it's one of the tougher things I have had to do but then holding your child down while someone hurts them is also tough).
We can do lots because we are working with a very forward thinking team at Daisy's school and we know Daisy well enough to know that our role will always be to advocate for her. But the glaring gap we have in our healthcare system is the care of the emotional and mental wellbeing of chronically sick children and especially those with learning disabilities. Our hospital has teams of pyschiatrists attached to specialities who work with the chronically sick children to help them make sense of things, but this option was not available to Daisy. Yet she has just as much a right to have an opportunity to express and work through how she feels about what is happening to her. Over and over when we tell people our story we are asked "how do you cope", "do you get any support" - and yes, as you know we do cope, we have previously accessed adult counselling support services and we have built our own support network and ways of managing our own stresses and anxieties - but what about the child in all of this? What scars and traumas are we inflicting on chronically sick children in our quest to manage their health and at what point do healthcare professionals involve them in conversations about what is happening and ask their views? When does the child get the chance to have their say, no matter how disabled they are?
In a convoluted way I am looking forward to our next inpatient stay, not only because hopefully it offers some hope of relieving some of Daisy's pain but also because I now feel even more empowered as an advocate, we have found a way of enabling Daisy to tell us how she feels and my job will be to respect her feelings and make sure that everyone who comes into contact with her while we are in hospital does the same.