Losing a CdLS child is a tragedy that we all fear. Peta Hamer experienced that tragedy a year ago and on the anniversary of her daughter Lizzie’s death Peta shares her feelings on the grief and the empty void that is now at the heart of her family.

Tomorrow is the first anniversary of Lizzie’s death.

Most people will have seen Lizzie in the Foundation’s Rollercoaster DVD where she is seen stomping about with her troll, drinking tea and eyeing director Jonathan Trace with great suspicion.

She developed aspirated pneumonia over a weekend and was admitted to hospital. We knew she was quite ill and had moved into our hospital routine of my husband Phil spending the days with her and me sleeping overnight at the hospital.

Like most CLS children she had been ill before and had always recovered, so it was a great shock when on the second morning she just stopped breathing.

Lizzie had been diagnosed with Barretts about three years before and she had suffered a lot in her last years

I think she had just suffered enough.

I know that in the year since her death, in the year before and in the year to come other families will face the same heartbreak that we have and my
heart goes out to them.

I keep thinking, there is now loads of information about how to live with and care for your CdLS child but not very much about how to live without them. Most CdLS children are labour intensive and to just stop is bewildering to a family whose very existence revolved around the care of a severely disabled person.

It has taken us a long time to get used to being able to leave the house together; to be able to take time and walk to places rather than drive because you needed to get home for Lizzie, or needed to rush her home so as she wouldn’t be out too long.

We can think about holidays lasting for more than four days (Lizzy didn’t like being away from home for longer than that).

However, there is no new found freedom that we wouldn’t give up for ever just to spend a few more minutes with Elizabeth.

I wonder if any other bereaved parents have had thoughts on how to get through this time. If anyone would like to write to me, I would be glad to reply.

It is not an easy thing to think of and is something we always put to the back of our minds but it is always there.

If there are other bereaved families who would like to contact Peta, please write through the office or to the address given in the Families directory.