I am writing this to you in Grief Awareness Week. Grief affects us all in life in many different ways. However, the families that are supported by True Colours Children’s Health Trust know and understand the harsh reality of what it is like to live with this journey of grief.  I want to pay tribute to you at this time of national grief awareness.  From the time of a diagnosis or when news was told to you that things were not going to be as you imagined, there is a grief process that begins.

Many of you have shared with me, there is no choice with regard to managing and getting through the toughest of times. I have heard many times from parents, “I didn’t ask to join this special club”. Regardless of this, your resiliency and strength have been witnessed in these challenging times.

Grief can take us into hard, challenging dark places. It can be confusing; we often feel lost and do not know who we are in the world. It is a time where our faith in the world and existence is shaken to the core.

However, there can be in the midst of it all, tender moments within the rawness, where connections with others are real and close, and our souls are laid bare with moments of insight. There can be life changing sustaining times that change our life paths forever. And yes, we would not have chosen this for ourselves, or for those close to us. There can be rich memories of things gone by.  However, the intense pain this brings can be overwhelming also. Grief often comes crashing in when you are least expecting it and the waves can be relentless.

Those individuals that have written about grief and studied this subject have many strategies they provide to survive on this pathway.  I have in my own life experienced the rawness of grief, but never in regard to a child’s medical diagnosis or the death of a baby or child.  These words shared are particularly with you in mind. I have walked alongside many of you over the years who have experienced, and live with the most intense grief, learning to adapt it into your lives to continue to function on a daily basis. You have been the inspiration behind the words I convey here.

I acknowledge that grief is unique to each individual, and one person’s experience is different to another’s. Grief has its own unique fingerprint for each of us.  How we ‘cope’ when grief enters our lives is specific to how we are as individuals in the world.

The saying, ‘to live in the moment’ sounds like an old cliché.  However, I have witnessed and experienced that this ‘moment by moment’ reality is what carries us through from one moment to the next, and you realise that actually you are continuing to function and move forward through this painful haze.

Surrounding ourselves with those that ‘refuel’ our souls and accept us where we are, and don’t try to change us is what helps sustain us at these times. Solitude is equally important as we need to rest at times and be ‘real’ and honest with ourselves to assist us to heal and recover from the intensity of it all.

The chronicity and relentless aspect of a grief that is lived for years is exhausting.  Therefore to pace ourselves in any way that ensures we are able to continue to function is something that can only be worked out as we walk the journey. It is important not to expect too much of ourselves or others close to us who are also grieving.

There is no way to hurry ourselves through grief.  There is the saying that time heals.  For some, this may be true.  However, for others it may be that the intensity eases as adjustments are made as we adapt to the changes and losses that have been brought into our lives.

To incorporate back into our lives the things that would normally bring us pleasure takes time, but these can be helpful to ground us and keep us standing. They also provide distraction which can allow space from the intensity of the raw grief.  Some things shared with me have been:

–  exercise in some form, walking, running or going to the gym

–  music

–  reading

–  watching DVDs

–  spending time with friends and family

–  journaling

–  art

There are many more ideas that are unique to individuals.  These are the things that enable us to begin and to sustain our resiliency.