One thing which I hope has come across from us, is just how lucky we were to have received such support through Thomas' life, both from a practical medical view but also on an emotional level. As a result we really feel that we are forever indebted to those charities and individuals. We would not otherwise have been left with such positive memories which now bring us so much comfort.
However, following Thomas' death, we felt a little abandoned and left to our own devices. When we were at the start of our lives without Thomas, this was a very daunting place to be - a long black road ahead, with no idea what our future would look like, where things were going to get us, how we'd be feeling, who we were or how long we would tread this path. With no end in sight, I felt lonely and scared, intimidated by it all and overwhelmed at times.
After contacting Child Bereavement UK (CBUK), Jason and I started our monthly counselling sessions with them. We both felt that these sessions gave us time to continue our journey with Thomas. That was our time with him, focussed on his life and his legacy, giving us permission and time to remember as well as enabling us to try to make sense of it all.
We had spent the majority of his life looking after him, getting to grips with his ever-changing needs and treasuring every moment we were blessed with. When he passed away, this inevitably stopped very suddenly and left a gaping hole. The counselling gave us a chance to regain that focus, if just for a short while.
Over the past six months, I really feel that the support we are getting is growing and continuing to develop. We were invited to join a bereaved parents support group based at Helen House, run every other month. This not only gives us a chance to meet other parents who have lost children of all different ages, but also gives us regular visits back to Helen House, where we have such fond memories and now gain so much comfort.
With the blessing of a new pregnancy, our counselling sessions with CBUK were extended beyond the initial twelve months and a new support group was opened for us to join. The hospital have also been amazing, ready to take our calls, listen and respond to our concerns and meet with us if we choose. The extra support has really been invaluable whilst our excitement and anticipation for the new arrival builds but whilst we are still grieving for our son.
As new opportunities have arisen, I feel that we have been able to spread Thomas' story much more widely and will happily share it with anyone who will listen. There have been the interviews we have done for television to promote GBS awareness, as well as our campaigning for that on social media. We have had the opportunity to talk at a conference at Helen House about how we found our transition from living in a hospital environment to a hospice. We have worked on a leaflet to be given to parents in hospitals looking at whether a hospice would be right the next step for them and their child. Thomas' video continues to be used by various charities to raise awareness and funds. If we can help prevent another family from going through the loss of a child, or help them through their worst nightmares, I would and will do all I can.
I also have to mention the support we have received from family and friends. It really has been invaluable. I know how difficult it is to watch someone close by suffering; feeling utterly helpless as you feel that nothing you can do will remove their anguish and pain. However, I can only say a huge thank you to every one of you who has helped us over the past 19 months, either on a practical level or emotionally. Whilst that magic wand to make things right doesn't exist, the support really does make a big difference. We still have a journey ahead but we know that we are not alone.
Thomas is no longer here to make an impact for himself, so I now feel it's my duty as his mother to enable him to do this. I am so very proud to have him as my son and for him to have left such a positive legacy not only on me but also on so many others.
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