Super mummies clinging on to sanity..........This is a phrase which came about when the son of a good friend of ours was going through heart surgery last year, Lyall was going through a rough time with his health and the whole world seemed to be wanting to close down our heart unit! It aptly sums up how we are feeling at the moment.Tonight wine seems to be the answer to the questions that are whirling round in our heads.
Lyall is becoming very unsettled by the lack of normality. Whilst we are having some lovely times he has clearly picked up on some of our anxiety. He signs playgroup every morning and desperately wants to see his friends. On a walk in the park today he saw a group of children and signed children and went up to them and said hello.
His solution is to constantly pull his trachy out-something that used to cause panic but now is so much a part of our lives that a few mumbled swear words under our breath, a putting back in of the tube, a smug look from Lyall that says "I'd like to see super nanny ignore that attention seeking behaviour" and then everything is sorted until the next time..............
Yet again today we have been so grateful for the support we are getting from people. Presents and cards are filling shelves in our lounge, a special thank you today to Josh and Lorna, Kris and Millie, Cardita, Oliver, Sophie, Toni, Natasha as well as all the lovely people who have sent or given Lyall things in the past few days. Also the staff in our local Coop who are all willing him to succeed.
Lyall is so much a part of the community we live in and really has the ability to draw people in. Despite all his health challenges we have always done all we can to make sure Lyall has a full and active life and as a result he is a confident, communicative and popular boy.
Can't really imagine how we will feel tomorrow. Possibly Lyalls last day with a tracheostomy but we'll see. Lyall is very much in control and does like to do things "his way"!
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