When K had his first birthday this card somehow seemed to fit. It was at the time we knew we were embarking on a challenge bigger than we had ever imagined and which was still unfolding before us. So inside a card that had this verse on the front, I wrote the first of a number of letters and notes to K. It is an ongoing dialogue that he may never understand, but it is part of “us” as much as all the other practical care stuff has been. It is part of our history. So here is this first little note, and then some that followed to give a little background to today, and where we are now.
Reach For Your Goals
8th June 1999
Dear K,
This card says something of what we are feeling on your 1st birthday. We hope for much, but are uncertain of what the future holds, and what the results of all the latest tests will be.
All we know is that it is in God’s hands.
All we can do is our best for you, and as you grow you must do the best you can for yourself.
With all our love…
Would you know my Name?
September 1999
Dear K,
Last week we all had a bit of a shock. I took you for a genetics appointment, and was told that your condition may mean that you would never sit, never walk and that you would possibly not survive childhood. Even though you have been so unwell, I was not expecting to hear this. It played to my darkest fears, and seemed to flatly explain why you were so behind all your development goals. I felt completely numb, and then settled into a kind of exhausted, embattled acceptance for a couple of days. Finally the “fog” started to clear, and I sat in the garden with you in the sunshine, and saw what was in front of my eyes; you, smiling. You just didn’t look temporary – and I prayed that we would all stay on an even keel, that we would go on believing that you were here to stay and live our lives in that light. Today I went to see nanny and granddad with you, and as we were driving along the M25 Eric Clapton started to sing on the radio. I cried like a hurricane was blowing through me…
September 1999
Dear K,
Last week we all had a bit of a shock. I took you for a genetics appointment, and was told that your condition may mean that you would never sit, never walk and that you would possibly not survive childhood. Even though you have been so unwell, I was not expecting to hear this. It played to my darkest fears, and seemed to flatly explain why you were so behind all your development goals. I felt completely numb, and then settled into a kind of exhausted, embattled acceptance for a couple of days. Finally the “fog” started to clear, and I sat in the garden with you in the sunshine, and saw what was in front of my eyes; you, smiling. You just didn’t look temporary – and I prayed that we would all stay on an even keel, that we would go on believing that you were here to stay and live our lives in that light. Today I went to see nanny and granddad with you, and as we were driving along the M25 Eric Clapton started to sing on the radio. I cried like a hurricane was blowing through me…
Today a song reached into the depth of my heart,
And tears came with unexpected power.
It reminded me of you my sweet.
You, whose eyes gaze into mine, as rich as velvet, and so soft:
Holding me completely, I cannot look away.
In that moment I knew the pain of loosing you would be beyond endurance and understanding and reason.
In this glowing hour you have been all joy,
In this briefness that is so far ours you have enriched this life.
Precious one you are so fragile in your tiny form, your silent world
Hold on!
Cling tight to this thread of life which binds you and me together.
Keep loving me, in all your innocence, caring nothing for my faults,
And I, who so often seek perfection, gaze on at you in spite of all your flaws, and see but that:
The blindness of a love that knows something of the measure of a deeper beauty.
As you fight, I dare to hope that you will stay, and this season of uncertainty will be a memory. That you will stake you claim on mortal life and be all that you can be, in this dappled world of light and darkness.
Do you know?
September 2000
My Dearest K,
I am sitting at home reflecting about the last few weeks and thinking that we have just climbed another mountain. It is just a month since you had the operation for a cochlear implant, and so much has happened in that time.
First we had to decide that the operation was the right thing to do. For me this was not easy. It took about a year to be sure – you are so frail, but in the end this was one of the reasons I decided it was the right thing to do – you – we – need all the help we can get. And you try so hard to follow what we say, you never stop looking and staring at our faces. Dad was sure from the beginning, he called it a “no brainer” – but it was he that sat by your bedside all night before the operation, wondering if it was the right thing, and if you would be OK. It was a kind of team work, his early confidence was what got us going down this route, and a years worth of studying the facts, figures and outcomes allowed me to rattle off enough information to keep us on course in the last minute of panic. I think it’s a boy/ girl thing!
Any way what I really wanted to say is:
Do you know that we did this because we want the best for you?
That we weighed up all the pluses and minuses and made our best decision.
Do you know that we love you, and want to give you every chance to thrive?
Do you know that all of us, your Dad, Amy and me, stayed with you every minute of every day? You were never on your own.
Do you know that in what lies ahead we will keep doing all that we can? We will pray for you, keep your appointments, do all your therapies, play with you and always love you.
Nearly Eleven
1st June 2009
Dear K,
I can’t imagine where the time has gone! In the last couple of weeks I have been looking over pictures, letters and diaries from the last eleven years, and it is hard to say how we have got from there to here.
You have just burst through the front door, back from school, shouting that:
“May finished. June my birthday!”
And we have just studied the calendar and counted seven days until you are eleven.
I know that the last eleven years have not been easy for you or for me, but the “me and you” of nine and ten years ago are cheering their heads off for the “me and you” of today.
In Matthew chapter 6 the bible tells us:
“…do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
I think we have navigated a great deal of the last eleven years on that basis. I think you are the better student of this though, I do not think you worry about much; you are full of confidence and seem to expect good things. I on the other hand have learned to live in the light of this scripture, but it has been a hard discipline.
When you were 4 years old and we were going through a particularly fraught and painful time with a great deal at stake, I was constantly, almost frantically, calling on God for help. At that time God gave me a verse and I believe He spoke it over your whole life, for me to be done once and for all with all the worry:
“Be still and know that I am God”
It has come back to me time and time again as new challenges have come along, and I know it hangs out there in the future covering my greatest fears and uncertainties. But for now, for today, I want to do two things. I want to celebrate you, K. Celebrate our journey, and all you have achieved. You are still “all joy” even when you are not! After everything, how could it be any different? So before I go rushing headlong into party invitations and chocolate flake cake, family get-togethers and birthday presents, let’s just stop, you and me, and be so grateful for today. For the miracle it is on so many levels, and the journey that brought us here.
And then, I want to thank God for all he has given us. For your lovely Dad, and Amy, who have made this journey too. For all the times God has stepped in when we couldn’t “step” any more and for how all the near misses were always certain victories in His hands.
With love always,
Mum x
