JON…

INTRODUCTION…
We are going to share some news that is not great. By sharing we hope that something of our journey inspires people to value life, born or unborn. We are learning that all life is precious. Feel free to pass this on.

STORY SO FAR..

We have had three miscarriages since our beautiful son Benjamin Edward Tiger was born nearly five years ago. You can imagine we were surprised and delighted to find the possibility of new life 22 weeks ago. Particularly as it was days before we were to start on a private (read expensive), testing procedure to see how we could do something to make a full term pregnancy. Result, I thought!

We were very anxious about the twelve week scan in light of our experiences to date. The picture above is of that time. Everything looked fine. Baby waved to us and looked very happy. I was a wreck having balanced hope against the possibility of him not being OK up to that moment, we saw him and tears flowed.

So Christiane has a baby in her tummy and last week, at 22 weeks, we went to the Ipswich Hospital to get a snapshot of our bundle of joy to be and find out if he was boy or girl? If a girl we could get rid of a lot of Benjamin’s clothes, if a boy we’d keep them, part of Christiane’s rationale. A routine scan then.

Unfortunately alarm bells rang for the ladies doing the scanning and we were referred to Addenbrookes Hospital in Cambridge for the next morning. The amazing staff and facilities there combined to confirm the concerns of the Ipswich Sonographers. Our baby had a number of issues that together pointed to Patau’s Syndrome or T13 according to the Doctor. However this was not certain. It could be Down’s or Edward’s or Patau’s or nothing?

We decided to take an invasive test which has a risk associated with it. A one in one hundred chance of inducing a miscarriage with one to fourteen days after it is taken. We did this so that we could ascertain what we were facing and prepare.

We got the results this Monday. The test showed Patau’s Syndrome present in the Placenta. We are told it is thought to be fatal.

Tomorrow we go to Cambridge to see the team that met us last time and to see what we face and what can be done.(Below is Jon’s First picture when we saw his heart beat)

CALLED BY NAME
We did find out we are to have a son. We have called him Jon, His brother does not like that name and calls him Freddy. So he has two names. JON FREDDY SLATER. My late father was John Edward Slater and whilst my brother has three boys John is still up for grabs. And I thought Jon Slater has a strong ring to it – be he banker or rock star as a career or anything in between.

So we are on a roller coaster of emotions with many tears shared with family and friends. Tears are good. Perhaps part of our feelings can be summed up by an email I sent on Monday. It is below.

As his daddy I am a stand for his life. He is alive now and his heart is beating strong. I have written some words and music and will overcome my fear of  ‘Not being perfect’ or of getting ridicule or complete indifference to publish these as my son inspires me through these tears and hope as soon as I can.

IT IS NOT OVER TILL IT’S OVER… Love N

 

EMAIL OF MONDAY 26TH NOVEMBER 2012

Hi everyone – sorry for global mail and very sorry to have to pass on this news…

I am sat here in the coffee shop a bit at sea. Got the results of the test on Christiane after last week’s scans of our baby this afternoon.
 
The test shows our son has Patau Syndrome. This means that he – Jon – will not survive according to all current wisdom and experience. He may not live full term or may only live a short time – days or a most a few weeks upon being born.
 
Christiane is obviously clobbered by this news as you might expect. She is also caught in this coughing infection thing which is pretty bad at night as she – and then I – can’t sleep. So sleep deprivation contributing to impact today….
 
We love you all and thank you for your love and support. For those that do please pray for us. What doesn’t kill you makes you stronger but golly – he’s my son and I can’t do anything!
 
I am writing lyrics and poetry this afternoon – perhaps as therapy. Maybe something good will come from this? Or maybe it’s just words… in any case somehow it helps.
 
We have gently told Tiger that baby is very ill and will not be with us long. Please pray for him for those that do and for those that don’t a send some warm thoughts :)
 
Golly – life is not a rehearsal “I came to give you life in all its fullness” – but I didn’t see this one coming. It wasn’t in the plan.
 
We have a meeting in Addenbrookes Hospital in Cambridge on Thursday morning at 9.30am. We will be seeing people re: where we are and what preparations we can make. 
 
We are a stand for life and it strikes me that we have time with our son now. He is alive, his heart is beating and he can hear us. I plan to – however crazy it sounds – to embrace every moment with our family of four whilst we’re all together on this earth.
 
Love N

26 responses to “JON…”

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