Two

Friday 5 April 2013

Four months ago it didn't seem possible, but Little S turned two today!

Of course we made a fuss of her in the way that all parents do when their baby has their second birthday: we showered her with presents, we put up happy birthday banners and balloons, we helped her open her cards from friends and family, we made sure that she was having lots of fun and getting loads of attention.

But there was something else going on with Little S's second birthday, something that made it feel like we had something to celebrate beyond a family birthday - a milestone reached that we didn't think we'd get to just a months before, a celebration that perhaps might never have happened.

And so, 
After the presents, 
And after the wonderful party we held two days later in which so many of Little S's friends came to have fun and make our house buzz with joy and sunshine, 
And after we'd all sung children's songs together with a sing-along mummy and a guitar-playing daddy, 
And after Little S blew out the candles on her birthday cake (handmade as a giraffe looking like the number two) with a blow that looked as good as any toddler's should be, 
And after Little S had said goodbye to our wonderful friends as they headed home, 
The family stayed behind (to help clear up, to have a cup of tea or just because we lived there!) and, with a lump in my throat and a tear in my eye I opened a bottle of champagne and proposed a toast: 
To our little miracle girl, who's made it back from the brink and given us such great and wondrous cause for celebration and who we love so very, very much.

And yet, the funny thing is, that although the toast was poignant and memorable and moving, it was the weekend of celebration that preceded it that was so much more important.

Because as much as we might stop to think about how far Little S has come and how miraculous she is (which we should),
And as much as we might keep praying for her recovery from heart failure and for her to not suffer any further deterioration (which we must),
The thing we really, really have to do is to celebrate every single day with her, to live life to the full, to drink in every moment and to not miss a thing.
Because for all of us, when it comes down to it, living and loving life together, with the people that you truly love, is the only thing that really matters.

Na'aseh Nes L'Shoshanim 

Why is this night different?

Monday 25 March
First night of Passover: Seder night

Why is this night different from all other nights?

Every year at the Passover Seder table we ask this question.

And every year we respond that Seder night is different because we eat matza and bitter herbs, we recline as we drink our wine, and we dip parsley into salt water, all to remember the Exodus of the Children of Israel from slavery in Egypt over 3,000 years ago.

This year we had a extra answer - this was the first time that the family had gathered together to celebrate a holiday since Little S began her personal Exodus from hospitalization during the dark days of December.

We know that she has far to go before she reaches anything like the promised land, but it took the Children of Israel 40 years to get from Egypt to the land of milk and honey with many trials and tribulations along the way - but they made it.

Jewish mysticism claims that the first night of Passover is endowed with an intense spirituality and strength - it is called 'leil shimorim', the night of guardianship, the night that the Children of Israel were guarded as the angel of death struck down the Egyptian firstborn with the tenth plague thus triggering the Exodus, a night that we today can call on to guard us from ills and from danger.

Now I don't know how much I can count on the claims of Jewish mysticism but, being both a pragmatist and a romantic, both a scientist and a spiritually observant Jew, I'd like to think that our prayers on Seder night have provided Little S with some form of extra protection over the coming months and years from whatever it is that she will inevitably have to deal with.

Thursday 28 March
Third day of Passover

So we went back to GOSH again this week and, whether or not this was anything to do with Little S's leil shomorim, we did receive some positive news.

Dr F was there and he was pleased with how Little S was looking.

He said that they have been measuring her Brain Natriuretic Peptide (BNP) as part of her blood tests. BNP (which consists of 32 amino acids) levels increase markedly with left ventricular dysfunction and with the severity of heart failure symptoms.

Sometime in January, Little S had a BNP level of 30,000 (not sure of the units here).
Now she has improved and is down to 22,000, which is the positive news, but she has to make it to just 600, so there is a long way to go!

But progress is progress - cautious progress as Dr F put it.

And not long now until Little S's birthday!

Na'aseh Nes L'Shoshanim ...