Sunday, 16 June 2013

Clinics, Meds and wonderful support

Posted by Mark
So far we have taken Sammy to the CF clinic at the hospital twice. It is a place we will get to know very well as he is going to need to have a lot of appointments to make sure he stays as healthy as possible for as long as possible and to constantly monitor and adapt his treatment. At these early stages we are having contact with the CF team at least twice a week with hospital visits, home visits and 'phone calls. Each time we meet them there seems to be a slight alteration to his medication which can be hard to keep track of, so there is now a dedicated medicine cupboard in the kitchen with his daily needs listed so we don't forget anything. We are also getting to know our local pharmacist very well and he is being very kind in trying to scour the pharmaceutical world for a brand of flucloxacilin that doesn't taste disgusting. I'm not sure how successful he'll be but as it is the medicine Sammy likes the least it is worth a try.

It is a little sad to see Sammy squirming and spitting his medicines out and it would be lovely not to need them but they are certainly making a difference. Before diagnosis (and thus before medication) he was constantly feeding as he was so hungry and was quite hard to settle. Now he is putting on weight and has long periods of happy playing between feeds and has even been known to sleep in his cot for more than an hour at a time! In spite of his obvious frustration at having to wait until he's taken all his medicine before he can eat, he remains one of the happiest and smiliest babies I have ever met.  As I write he is giggling away at the star mobile above his cot that was made by our friend Helen in Australia.

And that brings me to the other theme of this post: just how important our friends and family have been during this time. I am reminded of a quote by kid's tv host Fred Rogers which is often circulated at moments of public catastrophe (most recently following the Boston Marathon bombing). He said:

“When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping.”

And it is true. We do not have to look very far to find people who are helping. Since telling people about Sammy's diagnosis we have been genuinely moved by the many offers of support and help that have come from our friends and family; from work; from shul and from Joseph's nursery. It means a great deal to me that so many people have contacted us to offer practical support or even just words of comfort and sympathy. And I am also mindful of so many others: the people who work in the CF team; those who campaigned to have CF included in the newborn screening so that Sammy and others like him would be diagnosed early; the doctors and geneticists who have devoted their working lives to helping families affected by CF, all of these have my deepest gratitude and thanks. 

We read in the Talmud of a wise man called Nachman Ish Gam Zu. He got his name because no matter what calamity he experienced, he would always say "Gam zu latova" - This too is for good" and I have always been inspired by his example. Now while I cannot with all my heart say that this too is for the good, and we must face and recognise the feelings of anger and unfairness that accompany diagnoses such as ours, I can say that it has helped to highlight for me the goodness that resides in people and the strength that we can all exhibit when confronted by the difficulties and challenges of life. So to everyone who has offered words of comfort and practical support, I would like to say thank you and rest assured we will call on you when needed.

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