A year has passed and so much has happened for team barker. I have looked back at the year and would say in general we have been ok. When Thi was told that he was going to die he said immediately “but what about the boys?” I replied saying that Daddy and I would make sure that they were alright and that we would never stop thinking, talking and loving him. I think we can safely say we have achieved that and pray that we stay “ok”. We have achieved this with the inevitable falls and catches. Some days it feels like yesterday that we had to give Thisy that last kiss and other days it feels like a million billion years (as described by his much loved cousin). A strange emotion during this grieving process for me is the feeling of guilt when you realise that you have had a few days of feeling strong and have in actual fact enjoyed those days. The realisation stabs you in the heart and consumes your whole body, flowing through you from your feet to your head, with a sense of panic. When that panic leaves you are left with pure sadness that needs diverting into a more positive emotion, usually something that made me smile about Thi, with him bumping into me jovially telling a joke or showing his maturity with wicked sarcasm. The panic derives from a worry that you have forgotten or stopped loving which we all know is irrational and here we are again, where the rational and emotional are not harmonious. The flip side to the strong days are the obvious days that are filled with breaking and carrying a weight of sadness. Sometimes you want to shout to strangers “ don’t you know what I’m going through?” peculiar reaction to sadness but an honest reaction. A great deal of this month has left me feeling that Thi is very close, seriously close, which for me is a huge comfort. Whether that is my brain working in my favour or whether it is an honest closeness as I like to believe, I will never know. What I do know, is that the feeling is the next best thing to holding him. How do I know he is close you may ask and I will be honest in my answer. The sceptic will not be able to follow this but for me this is how it is. On many occasions, I have felt an element of distance from Thi, usually coinciding with strong days strangely. Instead of just accepting the distance I try to deal with it by allowing some quiet time to talk to Thi and simply ask for him to show me that he is near, to give me a sign that he is still looking over us and loving us. To date I have not been let down. Thisy has always produced a sign to show me that he is still very much near. When I receive my sign I smile and simply thank him. I will continue to ask and hopefully receive……..always and forever. And so we anticipate the anniversary of saying goodbye to our precious and most beautiful boy. We relive all the events of November and December. We remember Thi in the demise rather than with his lively and very active, warm, loving being. We relive entering CHASE thinking it would only be for a week and remember suddenly feeling comfortable and at home being altogether as a family where we can be there for each other 24/7. Five weeks of being looked after by the ‘A team’ at CHASE. CHASE was wholeheartedly the best place for us and I believe it was CHASE that enabled us to prepare the boys so well for saying goodbye to their brother. In anticipating the Anniversary a friend of mine asked “ How is everyone coping with the build up to the anniversary of Thi? To which I answered ‘ It is like a heavy weight that I carry all the time. Sometimes the weight is lighter than other days. When the weight gets too heavy you can do one of two things, keep struggling on carrying it and eventually stumble under the weight as it will literally weigh you down or you can work hard to hold it up and realise that at times you are going to need to put it down now and again for a rest, an inevitable break, then lift it again and carry the weight on………..the weight representing your deep love. People who have been through this experience say it is the anticipation of the anniversary which is more crippling rather than the actual day. I hope so because we plan for today to be a complete celebration of all that Thisy was and still is to us. Our hero who never gave up, who we love so deeply. As the weight is lifted I share with Tony about my heavy day and reflect on all the goings on. Sharing our individual pain can also be quite painful as although we both know exactly what we are talking about and going through it is hateful to see how someone else you love so much is hurting so intensely. Shared pain. In explaining my day Tony turned saying he too had had a bad day and instead of us wallowing in it he turned around and threw himself at the boys. A Barker bundle preceded and I am left smiling and loving. Thank the Lord for our barker boys. The boys have been brilliant, Jos is still sound, Jonas still remembers and talks all the time and Xav is fantastic now. However, he had a fall this month to our surprise. I always thought Xav was the one who was most able to express how he felt. I realised one week that things were changing in his talking about Thi and he had become very dismissive of all the things we were talking about Thi, covering his ears saying lalalalalal, pushing away when we showed pictures of Thi. I was realising we had to deal with this but wasn’t totally sure of how or when. After asking for a sign one Tuesday morning asking Thisy to show me that he was near, i realised later that night that he was definitely near as he enabled Xav to outpour. Jonas independently and somewhat randomly chose Badgers parting gifts as our bedtime story. Not an easy read, it is about death and the gifts that are left. Xav reacted in a ears covered lalala way! I pursued with the book until the bitter end where Xav had pulled away saying he hated this bit. I held him tight and simply said “its ok to be sad because not having Thisy is painful for all of us” I had to hold tight to him and he burst into tears. A complete release which was his starter to feeling free to talk. I then spent the next 40 minutes standing by his top bunk answering questions. He told me he was scared of dying and that it gave him a funny feeling in his tummy when he thinks about it, I could only reassure him with the fact that the normal is to be old and that when Thi knew he was going to die he was ok with it because he felt like he could go on no more. He needed to know why Thi died so young? Why and how he died? I explained that the tumour simply beat the chemo and he said “ what like in a race mummy?” He then asked about the meaning of Always and forever. He completely poured out his heart. This poor little 6 year old settled down after a very long and painful talk remembering all the good things to finish with and decided to buy something to remind him of Thi but it had to be something that Thi liked when he was well, before he was in pain. The conclusion was a Diablo. Trying to say our final pray from there was tough, through tears and in love. There has been a necessity for a whole lot of team building! Sometimes i feel like a mother bird trying to gather her nest when it feels like a few fledglings are falling out or teetering on the edge of the nest. The boys, Jos and Xav in particular are quite feisty with each other, which doesn’t sooth me. The purchase of a trampoline has been the perfect solution for now at least. The value of which lies in the words of Xav, “ You know my brother Jos, he has taught me how to play on the trampoline. I do Love him.” On another day he says “ boys you know the trampoline? I think it’s going to make us team Barker”. Music to my ears. We will see how long it lasts!! As the anticipation of the anniversary of Thisy’s death gets closer I am left looking after all three boys who have had the epidemic germs. Very poorly Xav, Jos and Jonas, and not a single nativity play seen. Last year we were obviously at CHASE and the year before we were in America hoping to mend Thisy. I question was it meant to be, were we not meant to see the nativity plays for our protection? We will never know. I am desperate in this week for the boys to be well again as I can’t bear to be looking after poorly children whilst I am reliving looking after Thi and his end. It just doesn’t seem fair. When I finally get to my school for work I sit for 5 minutes in the sensory garden dedicated to Thisy and sit crying reflecting on my poorly boys and reliving the last days with Thi and breaking wondering how we really are doing? Both Tony and I are just desperate for 5 minutes with Thi to hold him just for a short while. At the breaking point I ask Thi many things and promise Thisy many things too and ask for his sign. Precisely at this point of asking my sign appeared and comforted me. A smile of love x The 20th Tony and I relived fulfilling Matthias journey with the most precious and glorious visit from Steven Gerrard and Anna Matthews his wonderful PA. Nothing will ever compare to that feeling of completion. We will be eternally grateful to them as they helped complete Matthias’ journey and far too short a life. They are amazing people to take time out of their private lives for us. Matthias knew Steven was there and smiled from ear to ear, wouldn’t let go of Steven’s hand at the end of the visit managed to say ‘Thank you Steven”. Our darling boy we hope we gave you everything, if only we could have given you just a few more years with us we would have done so. Next year my focus is going to be fund raising for SGF (Steven Gerrard Foundation). I want to help other children and their families feel the way we did especially in difficult and heart wrenching times. I think this is a most fitting way to focus my time and believe Thi would be incredibly proud. Watch this space. And today…….I went to church for the first time in a year. I don’t know whether I really wanted to go but there is something inside of me making me go. I embraced it and it was actually ok, and ultimately saw it as a preparation for midnight mass. I then took myself to the grave and had five minutes with my beautiful boy just to say what I had to say, returning to allow Tony to have his special time visiting our boy. Returning home we were then ready to start our celebrations for Christmas by celebrating THI DAY………He has bought our whole family together for Christmas, something we would otherwise be unable to do. We had a wonderful time sharing our stories and love. It carried the children of all ages through the day. The adults were lifted by the children, but at times there was still evidence of their underlying pain, missing Thi and feeling the injustice. We owe this day of family love and strength to you Thi and we are all mightily thankful. We ate your favourite foods and visited your grave to have a chat and for some members share their news. We will continue to hold each other up with our network of love and support. “Life can be so busy and hectic, remember to carve time out for those you love and embrace those precious moments together” (@psychicsunivers) Thank you to everyone who has sent messages of love we are completely astonished at how many Matthias has touched. Thank you for keeping Matthias at the centre of our lives. Always and Forever Thisy, we love you and always will……forever. x Posted on December 23, 2012