Having to be in A and E with Jonas and the reminder of three years ago is all too hard to cope with. As I sit there with Jonas in the waiting room, remembering the smells, seeing the rooms and feeling the pain all over again I listen to the Radio which is playing ‘We are the Champions.’ Was that coincidence I ask myself? I continue to read the book I am reading to Jonas barking at words as I realize the tears are just falling. I live in dread at the thought of something happening to another one of my children. That feeling of waiting for the next brick wall to hit us never leaves me. I am scared that I will one day have to bury another of my beautiful children. A horrendous way to live and I struggle to see when it will ease. I daily try to live normally but sometimes it’s just too hard to trust the normal way of life. Jos too has a referral for his sore heels and as I take him for routine x rays I am screaming inside to the naïve radiographer. Do you know what this really feels like for us?Both Tony and I worry about the emotions potentially running through Jos as he endures these tests and suffers the pain in his feet. I stand back and look at my life now and I feel completely let down by life in general. It makes me crumble inside hoping and praying for life to push me forward and beyond this feeling. There is no doubt about it we have to find positive things to keep pushing us forward. Creating Thisy's garden was a valuable time for me to be at one with him. Talking to him about his end asking questions, hoping he was ok and asking him to be near. Tears roll and I continue to dig. Digging for Thi. A place to sit and reflect on my life as it is now. A time to think about my lovely boy and yet I am still thrown into disbelief, with that disbelief is a stab in the gut reminding me its all too true. That raw wound weeping just a little. At the planting stage the boys intervene and start telling me where the plants need placing. Jos in particular is very specific about his brothers’ garden needs. As I see its completion I realise that this wonderful creation is making me feel stabbed and slightly uncomfortable and yet I am still propelled to complete it. I reflect on the feeling and establish that although I personally set out to do this garden in actual fact I don't believe it is anything about my needs. It is all about the boys and their connection with Thi. I pray it brings them comfortable feelings and a closeness to bond with Thi spiritually. I relive specific moments of our whole journey. The day I had to tell the boys that Thi was going to die. How do you tell a brother that his eldest brother is going to die? I am not so sure it went that well. How do we classify well? Could it possibly go well? So incredibly hard for everyone and yet a moment I still reflect on and relive the pain. The pain must be just as hard inside for the boys as it is for us. Why would it be any different? Maybe they do relate to it like adults but are more able to accept and therefore don’t have the what ifs and maybes that adults have. Xavier often goes to bed and cries because he misses Thi. Such a terrible feeling for that small boy to have to experience. One action I am grateful for was the purchase of 26 Pudsey Bears given to primarily his brothers and then all Matthias’ loved ones as a reminder that he will love them Always and Forever. So in Xavier’s distress I hand him Pudsey which he looks at inside out and holds, snuggles down and falls asleep with a tiny piece of Matthias in his arms. Visiting a friend at the Marsden I realise there is a section of my writing that is missing. The middle! I wrote about being at the initial stages of treatment (which is squirrelled away in a draw) and living in the Marsden where there was only one thing….a cure. The bit missing is the section that talks about relentless treatments and relentless let downs, when the professionals ask you into the room for a meeting. Knowing full well that that meeting is not going to be what you want to hear because a nurse has been asked to go in with you, to hold you when you break and your world is thrown into tiny pieces. The guilt of actually wanting no more, for it all to come to an end whatever that end may be. Horrendous thoughts, but so very real. Thoughts you daren't share for fear that someone would think you bad or worse still not coping. It's neither of those its simply exhaustion of seeing the person you love in a deep and very special way going through something that you yourself are not even sure that you could do. It's real and true, flight from what feels like a helpless place. What keeps you going? Quite simply life. Potential life and life in the present making you keep going, rising above those feelings. Many parents out there having to take their child for treatment will recognise wanting it all to just stop in whatever way that may be, life or death. Today for me at the Marsden it was sad yet wonderful to see the amazing people who had looked after Matthias and tony and I. Catching up and telling them of our progress. How the boys have coped and what we are doing to keep Matthias center to all we do. On driving back I start the car and Adele sings out and I am aching for Thisy as he loved playing Adele to calm him when his pain was more than he could cope with. When Tony used to massage him to keep him calm and accepting in his hideous and so so scary end to his life, not that he knew it was an imminent end at this stage. Tears tumble as I relive Matthias asking me if he will die young. At this stage we knew there was no more treatment although the chance ofa trial drug was muted we were still at home trying to cope with that tumour growing by the hour inside him. “Matthias” I said “Nobody knows when they are going to die but it is true that it is likely that you could die younger than most.” His reply “But all I want mummy is a wife, a home, a car and a family” Its not bloody much to ask for is it? So, why was that taken away from him? Why? Come on life push us forward………… On the 23rd November we will hold a charity ball in memory of Thi. It all started in January when I realized I needed something to push me forward. A friend said she had a thought and suggested a twist on a black tie do…Red Thi Do! I was in it to win it! What started as a few people at potentially Woking Fc has ended up as 400 people at Mercedes Benz World with Absolute taste as caterers. I remain amazed at the tributaries of love and help. People have been truly wonderful. We have amazing auction prizes and Kiss fm as Djs, a committee of six and we are organising a huge event to spread Matthias love and accepting character whilst saying thank you to Steven Gerrard for completing Matthias’ too short a life with a percentage going to CHASE. Just mums on the run doing things we would never have done if Matthias hadn’t have died. Character building stuff. Next year the focus will be on CHASE and a percentage for Steven Gerrard Foundation and so this will continue. This is what allows life to push us forward, my God I cant tell you how good it feels to be doing this but it is always bitter sweet, it always will be. The scar with the gaping wound underneath will never go and both Tony and I would give up everything to just hold our boy again. Love is all we have……Always and forever. x Posted on May 22, 2013