Receiving the diagnosis of Batten Disease and seeing the inevitable changes in your child or family member is hard to accept, it brings about a cycle of grief that is always present, sometimes at the front of everything and often in the background. Understanding this grief cycle, whilst at times unbearably painful, can also be a source of strength, resilience and, oddly, at times a source of comfort.
Batten brings changes for your child, and it is hard to know when these will happen. There will be times that you feel you need to hold on to emotions and not allow them to rise to the surface, other times you feel an overwhelming need to let them out.
There’s no correct way to feel when you’re grieving. Bereavement and loss affect people in different ways and cause different emotions, feelings, and symptoms.
The Spiral Staircase
An extract from ‘Growing up to Dependence’ a book developed in 1992 by the team from Bartimeushage- a centre that supported children and young people with Batten in the Netherlands. A parent recounts the disclosure interview with the child’s Paediatric Neurologist, following many months of appointments.
‘The Neurologist was a man you could talk to, who made it quite clear he understood our worries and the shock we felt; I believe he found it difficult as well. He said: “what you will be going through is like walking down a spiral staircase which descends in circles. How long the staircase is and what the next step is, will be hard to say; It is also a staircase with uneven steps, and it is easy to stumble: when you think one step is completed and you can move on to the next, you may find that you haven’t moved at all – a very long step; there are shorter ones too, which will take you down quicker and further than you expected. A staircase like this makes you uncertain and constantly on your guard. You never really know where you are. Fortunately, the staircase does have a banister, which you will sometimes be able to find by touch and hold onto for a while. These are people you know or will get to know in your child’s subsequent treatment. As parents you will have to descend that staircase alone, I’m afraid…”
We were all silent for a while…’
Anticipatory Grief
For many parents the journey to diagnosis is slow, seeing changes in a child and not understanding why and sometimes receiving a different initial diagnosis, then something happens to warrant further investigations. Each type of CLN Batten progresses in a different way and at different times in the child’s development. Often parents have an innate feeling that their child is showing significant changes with vision loss or seizures or reversal of milestones – diagnosis can take many months or even years.
For many parents the relief of finally knowing what is causing the child’s changes is at once immense and crushing, and the point of such an overwhelming diagnosis triggers a process of long-term bereavement for the child’s life which is so different from their dreams; and anticipatory grief – as they know that their child will experience a growing disability and the losses that they face are immeasurable.
This process of anticipatory grief is present for the whole family, parents, siblings and wider family members.
After being given the diagnosis of Batten disease, you may be in shock or feel numb. You may feel that you need to be strong for your family members and your children. You may also feel disbelief or feel unable to accept the diagnosis and the prognosis. These are all normal feelings for someone who is going through a significant loss or a bereavement.
Anticipatory grief involves many losses. You will see changes in your child or relative as their condition progresses. Some days will be hard and painful, some days will be ordinary, and some days will be filled with fun and happiness. When grief is raw, it is all consuming, but time brings a degree of healing, acceptance and peace, these opposite emotions will ebb and flow during the child’s life for them and for those around them.
Everyone grieves differently but the following feelings are all common during anticipatory grief and beyond into bereavement.
Shock – The initial paralysis at hearing bad news.
Denial and bargaining– Trying to avoid the inevitable, what if it’s wrong, what if the tests were mixed up, if I do this will it make him better….
Anxiety – When you are caring for a Batten child, you may feel very anxious. Sadness and painful feelings can come on very suddenly. It can often feel as if it’s hitting you for the first time over and over again. It’s very normal to be frightened about how you will cope and about what will happen next.
Anger – You may find you feel very angry with a situation, or person. You may also have to cope with someone else’s own anger and grief.
Loneliness – Batten may have changed the child you are caring for, or you may feel others don’t understand what you are going through. Caring can limit your chances to get out and meet other friends and loved ones and your world can grow smaller. Sometimes it is easier and feels safer to retreat.
Guilt – You may worry you can’t do enough to help. You may also experience survivor’s guilt because you will continue with your life while they won’t.
Exhaustion – You may be exhausted – with caring duties, and with the constant worry.
Despair or Depression – A realisation of the inevitable or feeling that no matter what you do it won’t be enough.
Testing – Seeking realistic solutions, finding your way through, with physical, practical things at first.
Acceptance – Finding a way forward. With Batten there are things you find you can accept easily and unquestioningly; others take more energy and time. Understanding and sharing how you feel with people you can trust and feel safe with, and who can listen openly to you, can help you find a way forward.
How BDFA can support you
We are here to listen, to reflect with you, we never want to be intrusive, but we also understand that when someone is feeling low it is hard to reach out, so we may call you occasionally just to see how things are, and where we can offer supportive strategies we can help find a way forward, whether with enabling dialogue and supporting resolution around issues to do with health, education and social care partners or connecting you with other families. Your grief will be your own, but we would want to ensure you don’t have to feel alone.
We can help you:-
- With counselling through ‘The Maypole Project’
- With friendly group zoom meetings led by BDFA team members and peer befrienders and with 1:1 peer befriending
- With professional support through the Family Support and Advocacy Partner.
We are here to support you.
If you would like us to put a star, in memory of your child, on our tree please let us know by emailing their full name, date of birth and date of death to our support team. support@bdfa-uk.org.uk
Child Bereavement Uk:
Provides support to families, children and professionals, when a child of any age dies.
Support and Information: 0800 02 888 40
Compassionate Friends:
Provide support for family members following the death of a child. Their helpline is open every day of the year. They also offer sibling support.
Helpline UK: 0845 123 2304
A Child of Mine:
Provide information, support and guidance to families after the death of a child.
Helpline; 07803 751229
Child Funeral Charity:
Arranging a funeral for a child is something no-one can imagine having to do. The Child Funeral Charity can help families with the cost of arranging their child’s funeral. Please contact the BDFA if you would like help with your application. You can also call the Child Funeral Charity to talk about any aspects of arranging your child’s funeral.
Telephone: 01480 276088
Although we have attempted to select only reputable organisations, the BDFA is not able to specifically endorse or vouch for any of those listed. Therefore we advise that you remain cautious in your dealings with anyone until feeling confident you have established their legitimacy.
