Friday, 14 November 2014

Transition

Transition.  Transition to adult care.

A phrase I never thought I'd see.  And yet, there it is.  Written on the letter that we received a few weeks ago following DS1's cardiac check up.

It feels odd.  It feels a million miles away from where we were this time 14 years ago.



I still cannot write fully about those days.  Stop me and ask me in person about it and I can tell you, relatively upbeat and calmly.  I have tried to write it down, but it all becomes too muddled and then I just end up pressing delete.

I do not want anyone to feel sorry for us.  I am not a victim.

DS1 leads a normal life and always has done.  He is not sickly as a result of his condition.  We are lucky.

And that I feel, is something to be celebrated.

DS1 is the focus of a lot of my moans and jokes on the blog, but the truth is that I wouldn't have it any other way.  I am glad I can do it.  I am proud to have a typical teen.

Proud because as any parent of a child with a Congenital Heart Defect will tell you, all we want is for them to be normal.

After listening to the speakers in the Can blogging change the world? session at last Saturday's Blogfest, the one thing that I've taken away from it is to be passionate about whatever cause we feel strongly about, to use our story.

I'm not specifically a charity blogger.  This blog isn't about my children with heart conditions or even about my twins and their time in special care, and yet I do feel strongly that if we can be a success story of sorts with our family who have survived all of that, then it might bring some comfort to somebody somewhere.

The internet wasn't as widely used when DS1 was born.  I didn't have the luxury of using my smartphone to google the multiple terms that were being thrown at us by consultants as they tried to explain what was wrong with our baby.

I used to scour the large notice board in the PICU family room at Alder Hey when I was supposed to be resting or eating, desperate to read one letter of thanks from a parent who's child had been through the same surgery as ours.  Looking for the success story that told me that everything would be OK.

I'd like us to be that success story now.  I'd like to think that if somebody going through those early days of a Congenital Heart Defect diagnosis with their child, does google Transposition of the Great Arteries and comes up with this, then they may see the light at the end of the tunnel that we are now starting to enjoy ourselves.

It is impossible with DS1's condition to know what the future truly holds (many early recipients of the Arterial Switch operation are only just entering adulthood themselves), but I am jolly proud that we have made it this far, relatively unscathed.

His transition to adult care will take place after his next appointment in 18 months time.  He'll say goodbye to the consultant that has looked after him since he was three weeks old and move to a hospital that is for adult heart patients.  The end of one journey and the start of another.

I find it hard to write personal and serious posts on this blog.  This post has taken me over a month to write.  I'd always intended to write a letter and include a photo of DS1 for the staff that treated him in PICU, with the intention that it would be pinned to the noticeboard in the family room, but life got in the way and I just didn't do it.

I want to share these few thoughts now though, and I hope that other parents facing the same challenges can see that there is life after PICU.

*Hovers over delete*

*Presses publish*

8 comments:

  1. Philippa, this is such a beautiful post and so encouraging for other families who have children with the same heart condition as your DS1. I am so glad that you pressed publish and not delete. What a wonderful milestone for you to be at the transition to adult care - yes, I agree definitely something to be celebrated. As a 'newer' heart parent, those success stories are definitely something that help give us hope and encouragement in those hard times in hospital and seeing photos and stories on hospital noticeboards can also help too. So glad that your family is one of those success stories x

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    1. Thanks, Louise. I'm very pleased that I can write about it now and I hope that somebody can draw a little comfort from our story.

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  2. Such a wonderful post! I wrote about my girls heart surgery and put it on my blog but I can't read it now without feeling an emotional wreck. It seems a lifetime ago...
    What a wonderful thing to celebrate.....Well done for publishing!

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    1. Thanks Kim. I've read your posts and I think you are very brave to do that. Part of the reason that I've never managed to publish mine before is that I'm far to emotional about it all still. Looking at the picture at the top of this post it is almost 14 years to the day since it was taken but I can still remember how I was feeling like it was yesterday.

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  3. Well done for writing this gorgeous post. I am so glad that you are able to share what must be an very emotional subject for you and I hope that other parents can take heart in your story xxxx

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  4. Oh Philippa, what a moving post! I can understand why it's been so hard to write and I think it's a lovely thing to do to publish a success story for other families to draw encouragement and hope from. xxx

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    1. Thank you. I've read dozens of stories about babies with heart conditions over the years but not much about older children as I don't think they tend to get publicised as much. I do hope that it helps someone though x

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