Friday 8 July 2011

Why I'm glad I started (and continued) this blog

I've said before that I'm not a particularly charitable guy. Sure, I like to do things for friends, favours, lend an ear if someone needs it, but in the main, I'm just your average chap. Nothing special.

The reason I started this blog as I've said many times before, was a way of getting all the emotions out me via the focus of writing it down. And also to help others close to us understand the 'condition' and how we were feeling. Then Jake was born and the cleft didn't seem anything like as bad but I still wanted to write it all down because it was still relevant and despite having to put him through operations, we were new parents and it was exciting. Plus I like writing.

And then I got a thank you email. And then a comment and another email. And slowly it started to dawn on me that maybe, by continuing to write our journey down (and therefore increasing my Google appeal) people who were a little behind us in their similar journey were finding the blog and perhaps getting something from it. I have to say the first 18 months of the blog were much more relevant and considered than the second but it's what's written in the first half which is what people who just got 'the news' will want and need to read.

I've had nice email conversations with people from all around the world and am now friends on Facebook with a couple of them and it's great to see how their lives are moving on how well their kids are doing.

So I never started this thinking it would help anyone (see the point above about not being that nice!) but it's definitely the reason I continued.

Every now and again I'll get an email saying thanks and it breaks my heart to know there are people out there feeling now how we felt then, but if reading my ramblings does anything for them at all that's great.

So I'll carry on if that's o.k. but kids will always be born with clefts and parents will in the main get the news before the birth. And more and more will head to Google and keep finding this blog; and when they read my entries and the selection of emails and comments below, they'll realise that life goes on and these little challenges are just little bumps in the road.

Here's a few of the comments and emails.

"Hi James, Just stumbled across your blog while searching for information on cleft lips & palates. We have just had our 20 week scan and discovered that our son to be (#2) has a cleft lip (palate TBC) and I have so far found this blog a fantastic read. I've only just started (from the beginning) and already feel like it could have been our story you were writing about. Look forward to reading it in its entirety hoping that it will give us some more insight as to what we might have coming up! Thanks for putting it together, so far a great read."

"I came across your blog tonight and found myself reading quite a bit of it. My daughter, xxxx, was born with a bilateral cleft lip and palate. She is now 16 months old. Two months ago she had her third surgery, which was her palate repair. I can relate to so many of the emotions and fears that you had before your son was born. I was so worried about how people would react to her. But once she was born, I was so in love with her and felt she was the most beautiful baby ever! Thanks for sharing your story. Jake is adorable!"

"Congratulations on your second baby. I love your blog and it helped us a lot as our little boy was born in July this year with cleft lip and palate and we also created a blog to release the sadness while I was pregnant. Congratulations and all the best!!!!"

"Hi James,

My name is xxxxx and my son, xxxxx, was born in March last year. He is absolutely beautiful and perfectly healthy but was born with a bilateral cleft lip and palate. I just wanted to let you know that I have been reading your blog since before xxxx was born and it has been a real help to read about how you both felt and how Jake has got on and also to read about all your other trials and tribulations, it is a real talent to be able to write like that and I wish it was a gift I had!!!! xxxx has been through three operations in his first year which have been really hard. We are delighted that for now its all over, he is still under the audiologist and may have to have grommets but for now is just being monitored.

I am really pleased to hear that Jake is doing well with his speech. I must admit to being a bit paranoid about all the sounds xxxx is making. I have two other children who spoke very early and so am trying not to measure against them, after all, xxxxx and xxxx walked very late and xxxxx is already cruising around so its all swings and roundabouts. As you say, my main fear is probably that he will get bullied. It seems particularly unfair that its the ones that go through so much as babies that are the ones that are more likely to get bullied, but maybe they won't and all the worry will have been for nothing. Fingers crossed. By the way, i was born with unilateral cleft lip (palate not affected) and was hardly ever bullied, probably only 3 times I can remember and if it hadn't been for that,it probably would have been for something else.

As we live in xxxx , we are also under the cleft nurse Ann, I did tell her that i was reading your blog months ago and I think she mentioned me to you and you subsequently mentioned it in your blog.

Anyway, just wanted to say hi and thanks for writing. I was hoping to get some picture attached of xxxx , but think all the pics are on my husbands computer. Maybe next time."

"Hi James,

Thanks for your words of encouragement on your blog. Its been just
over a week since our 20 week scan and this time last week both myself
and my husband were a bit of a mess but now I'm so much more
comfortable with what is happening. And without wanting to sound too
sucky - I think its partly due to your blog. We already have a son (2
months older than Jake) and we didn't find out the sex until birth,
this time we wanted to try something different so decided we were
going to find out at the scan. And that consumed our pre-scan
thoughts - we were so excited about finding out whether it was going
to be one of each, or 2 boys, the pros and cons of both etc etc we
completely forgot that this is actually quite an important scan where
they check that everything is actually progressing as it should be.
The lips were the last thing she checked, and I remember thinking how
hard her job must be on the odd occasion where she has to tell someone
that there is something wrong. And then she told us, and we were dumb

And for the next couple of days we hardly got off the internet trying
to find out more about this condition, and we were both really up and
down and I kept saying to xxxx (husband) that I just couldn't
understand why it upset me so much, since it is a supposedly fixable
condition. We were just completely thrown. And being the lucky 1 in
700 we felt pretty alone. I needed to hear stories of people that had
been through it all, and come through the other end OK, and while the
before/after pictures of which there are 1000s on the internet helped
a little, your blog really made me realise that while this was
important, it wasn't the be all and end all.

So now we just need to wait and hope that the cleft is not a symptom
of some other underlying issue. My obstetrician gave us some words of
encouragement this week to indicate that that was very unlikely since
everything else seemed to be OK.

Hope things are still progressing"

"Hello James

My name is xxxx and I am emailing you to say thank you.

Two days ago me and my Husband went for the 20 week scan and found out that our unborn daughter is going to have a cleft lip and possible cleft palate. I am still very much in shock and really upset. I am just feeling so numb right now. We already have a Son called xxxx who is 20 months old who has no health issues so we just blissfully assumed that this pregnancy would be fine as well. I cant stop crying and blaming myself even though I know there is nothing I could have done differently.

We live in xxxx and the xxxx Hospital's Sonographer have said they will refer us to the CLAPA team and have given us the link to the CLAPA website but I think I have just freaked myself out more by googling information. That is until I have come across your blog.

I have been reading your blog and it has made me feel a bit better. It makes me feel that maybe there is light at the end of the tunnel and that things are not as bad as they initially seem at the moment. I feel bad for being upset as I know that we are lucky compared to other people that are facing much worse problems.

Anyway sorry for rambling on, just wanted to say thanks."

Monday 4 July 2011

20 week scan

I get a fair amount of hits to this blog from expectant mums and dads who Google '20 week scan' + whatever is bothering them...unsurprising, given the name of the blog, it's longevity and subject matter. However, there's so many other terms which go on the end of the '20 week scan' prefix and it's amazing to see the types of keyword people use (I can see this stuff in Google analytics). What's more surprising is the amount of spelling mistakes but that's another story.

Anyway, the last month has delivered me hits for everything from 'piers morgan cleft lip' and 'girlfriend with a cleft lip' to 'professor haers' and 'cleft lip blog' and it dawned on me, whilst viewing a set of sterile figures on a screen, that each search is by a human with a problem, a worry or in need of help. The internet is obviously a fantastic resource yet it often proves to be a very unhuman place for those most in need. I remember when we had Jake's cleft lip and possible cleft palate diagnosed, we headed straight for Google (against the nurse's better judgement) and did our own research...I forget what search terms we'd have used but I'm sure someone else analysed the terms we used in the same clinical fashion that I do for those typed in by others. But I remember what we went through, the worry, the questions, the sadness that our experience would be different from that of others and how it totally changed our world for a time. I remember my dad always saying that all would be fine and after a while the worry and concern would be a thing of the past and of course it is, but I'd never belittle it...I'll always remember how we felt and I hope that when people find this blog, they'll see that I can 100% empathise with how they're feeling right now, before their journey starts but also that, having come out the other side, things will get easier and the memory turns into well, just a memory albeit no less significant.

As Jake hurtles towards his third birthday (which actually makes this blog three years old - and still going!), we barely notice his lip, well we can tell there's been some history there, but it's just a part of his face; similarly we don't remark about how perfect his ears are as they're just his ears...I'm not really sure what I'm saying as there's two parts, 1. objectively looking at him (and you have really do it in the mirror so you can see him from a different angle), I can't see anything wrong, he's a healthy, handsome and happy little boy with a small scar on his lip but 2. kids can be cruel and soon enough he'll have to fight his corner when the playground bully decides it's Jake's turn for some abuse. The stats on self image and kids born with clefts are pretty good and I think it's because they're in the system (in the UK at least) from day one, so they will be assessed throughout their childhood, and part of that assessment is how they seem themselves and how to deal with anyone ignorant enough to pick on them. Jake will be teased just like others will be teased and he'll be teased about stuff other than the scar on his lip in all liklihood...and as his dad I'd be just as angry and upset for him, if he were teased about his hair or anything else, it's just that I don't want anyone to be nasty to him about anything, ever for the rest of his life because I love him, not because he was born with a cleft.

Anyway, this is all a bit rambling but if you've got to the bottom of it having searched for '20 week scan...+ whatever's on your mind, you should know that whilst things seem impossible to deal with right now, as time goes by and you go through some tough situations and emotions, there is another side to it which allows you to also enjoy the present whilst knowing the future will take care of itself.