anticipation, CHD, Children's Hospital Westmead, chronic illness, Fontan, HLHS, Open Heart Surgery, staph, surgery
“Two more sleeps til my operation, I’m scared I might die.”
Ted’s words today came at me like a very sharp kick in the guts.
There is no terror in the bang, only in the anticipation of it.
Anticipation is indeed something that can terrorise even the littlest of people. Knowing Ted, this is why I chose only to drip feed tiny bits of information to him about his operation. I don’t know how he made the correlation between his surgery and the very real risk of death but he did. And it was a very sad thing to hear.
We are doing our best to put his mind at ease, all the while hiding our own very real fears. This is a challenge in itself. One of the hardest things on the day of surgery is making the very long drive out to Westmead pretending to be chipper for Ted’s sake but feeling the dread building with every kilometre. Such a hellish drive. Then the long walk to the anaesthetic bay, that’s another journey we try to make fun for Ted while fighting back massive sobs.
Today and tomorrow we have to wash Ted in this weird pre-op stuff that smells like flea shampoo (he is Staph A positive) but it has the added bonus of giving him cute hair:
Rich and I will spend the day with Ted tomorrow being an only child for a day, doing fun things ahead of Wednesday. Wednesday won’t be fun. Today after dropping Tabitha at school at 8 o’clock in the morning I let Ted have this green frog cake full of sugar and rubbish. Just because.
I dread this with you with the dread that only someone who has had to march their child to anesthesia and hand them over wondering if for certain they will not remember it. Praying they won’t. My prayer is for safety for Ted of his body and mind. And peace for his spirit and yours. I pray for George whenever he is having a procedure that angels will whisper to him while he is in the medically induced slumber and he will only fear safety and peace. So much love for your family from Charleston.
all my thoughts are with you!!!
Kylie Angus said:
Thinking of you all and sending Teddy lots of love.
Ted is such a brave little fellow!
I’m sending you all lots of love and strength from Berlin. For sure I do have Ted and your family in my prayers.
Brought tears to my eyes thinking of this challenge for Teddy, for you and Richard, and for Tabbie and Monty. Andrew and I were just talking about the sheer challenge you face of what abd how much to tell the children last night. Completely thinking of you this week. Enjoy your fabulous day with Teddy today and all the prayers and positive thoughts to you on “the day”. xxx
Picturing Ted saying those words to you made me cry. They are words no parent wants to hear their sweet little boy say. I hope Wednesday is a special day for Ted, Rich and you. I am not the praying type, but I will be praying for you all these next few of days. xxxx
Kerry and Ross Taylor said:
Neither of us can possibly imagine how hard this must be for you, but we are thinking of you all, and hoping for the very best possible outcome with all our hearts. With lots of love from all of the Taylors. xxxx
Anna and Freya said:
We think of you often and are praying for the very best. Our love and wishes to your whole family x
Penny & Ari said:
No words can express or attempt to describe what you are all going through. You are all in our prayers as are the entire team who will be working to help Teddy tomorrow. Enjoy creating special memories with your courageous little boy today. All our love. xxxx
Jo Rose said:
You are all in our thoughts and prayers – sending courage, strength and healing your way. xxx Jo, Rick, Sophie and Charlie
Anna Eagle said:
Thinking of you all tomorrow lots of love xxx