An Unexpected Road

[laoislad]

Two months ago my wife gave birth to our first son and indeed our first child in the Coombe Hospital in Dublin.It was a bit of a mad dash to the hospital and after getting there at around 2am our son was born at 6.32am at a small enough weight of 6lb6ounces.We called him Eóghan as it is a family name of ours and it goes back a good few generations.
I don't need to tell anyone who has experienced the joy of seeing their first child born how I felt that morning,I was over the moon and I don't think I have ever felt such a rush of joy,the fact that he was a boy,a son, made it all the greater. I had said right through out the pregnancy that I didn't mind if it was a boy or girl but secretly I really wanted a son,not that I wouldn't have still loved a daughter but like any man I really wanted to have a son.

Soon after his birth Eóghan was taken by the pediatrician for the usual check ups and all seemed to be going well and it didn't seem like we had any reason to be concerned about anything.
That was until she came back over to the bed with the baby and said to us that she believed the baby had a genetic disorder.Not having a clue what she meant we asked her what was she talking about.
Your son has some of the physical characteristics of Down Syndrome are the words she told us and the words that meant my whole world had now changed twice in the space of five minutes.

I had just gone from the highest of highs to the lowest I have ever felt in my life,how was it possible this joyous occasion had just turned into a living nightmare.
As I have already said anyone who has been there at the birth of their first child will understand the high I was feeling at first,I'm also sure many of you have felt pretty low at times in your life but to go from one extreme to the other in the space of a few minutes was horrific and something that I won't ever forget,it is burned into my memory and isn't ever leaving.

The next few hours seem like a distant blur,yet when I am on my own and start thinking about it I can remember every little detail about it.
I am ashamed to say I had some thoughts that I would never have thought I could ever have about my own child. I didn't want him,I wanted someone just to take him away so I wouldn't have to deal with any of this. His first night on this earth was spent in the ICU,I prayed to God that night to take him back as I was convinced it would be better for him and for us.These are thoughts I am going to feel guilty about forever. I have been told by experts all these thoughts were natural and not to be too hard on myself. We have been told that what we went through and indeed what we are still going through is a grieving process,and that we are grieving for the child we thought we would have. I suppose there is some truth in this but I still don't think I will forgive myself for some of  the things I thought.

I didn't know the first thing about Down Syndrome,I didn't know anyone with it or anyone who had a child with it.I had an image in my head of a Down Syndrome person and I didn't like what I was seeing.I felt everything I had hoped for for my new child was gone,all the dreams I had, had been taken away from me and there was nothing I could do about it. My son was never going to get married,drive a car,play for Liverpool,Laois or Dublin even(yeah I know a silly dream to have and he probably wouldn't have had anyway but I'm sure we all have deluded dreams for our kids).
This wasn't the child we wanted,this wasn't the child we had talked about,it wasn't the child we had decorated the front room for as a nursery this wasn't the way it was suppose to be having your first child this just wasn't what we wanted.
I was angry,really angry,all we could say was 'why us' how did this happen to us.My wife had done everything she should have all throughout the pregnancy. Many a time when we were at the Coombe for scans or checkups we would see pregnant women outside smoking,It killed us to think they would probably have a perfect little baby and we ended up with a child that would have special needs.

Over the next week there was lots of tears and our emotions were all over the place.
We were suddenly in a world that was alien to us.We heard new terms like 'Trisomy 21' which is the medical name for Down Syndrome. It turns out my son has 47 chromosomes whereas we all only have 46, the extra chromosome comes from him having 3 copies of chromosome 21,we have only 2 copies of it, hence the name Trisomy 21 ,and that's it that's the only difference we were told though unfortunately that slight difference in his genetic makeup brings a whole host of problems. We were told about possible heart defects,poor hearing,digestion problems,sight and learning difficulties,delayed milestones such as crawling,walking and talking.We learned it happens in 1 in every 800 live births.Why couldn't we have been one of the other 799 is all I could think.

While we were told that he had Trisomy 21 we had to wait until the blood test came back to say for certain. I had myself convinced the Doctors were wrong and that he didn't have it. Anyone that came to see him said they couldn't see it in him.I Googled for hours and read all this stuff about Mosaic Down Syndrome which is a lesser form of it,I was convinced this is what he had.The Pediatrician in the labour ward on the morning he was born had told us he was only showing about 3 of the signs they look for,all this added fuel to the fire and I was sure the tests would come back negative for Trisomy 21.Of course when we got the results they came back positive,he did indeed have T21. It was another kick to the gut,I now had it in black and white that I was going to have to raise a child with Down Syndrome.

We were then introduced to a Pediatrician who was a specialist on Down Syndrome.He told us to forget everything we thought we knew about Down Syndrome,forget the stereotype,forget that image we had in our head. He told us times had changed,that people with Down Syndrome were leading far better lives than they were even as short as 10 years ago. He told us nowadays there are far better services to help us,early intervention programs,better screening for health issues. He told us Eóghan had a certain limit he could reach but he will only reach that limit if we help him get there,if we put in the effort to give him the best of everything there was no reason he couldn't go on to live a long and hopefully independant life.I know this can be said for any parent and their child but in his case it was going to be vital that we done everything we could for him.Years ago he said the majority of babies like our son were sent to institutions and were never given a chance at life,and those that weren't didn't have the same early intervention services like what is available nowadays.It was the first time since his birth that I started to feel a little better.
I started to realise that it was time to man up,this is the way it was and nothing was going to change it. Yes it wasn't the life we wanted but it was the life we now had and I don't think I could live with the regret if I didn't do everything possible to help my son.

The last two months have been a bit of a rollercoaster. We have become frequent visitors to Crumlin Children's Hospital. Thankfully all his tests so far have come back with positive results. We had tests done for hearing and cardiac amongst others. His heart is the same as any newborn,50% of babies born with Down Syndrome have heart problems but thankfully he doesn't. Eóghan can also hear in both ears,hearing and fluid in the ears  is a common problem with Down Syndrome but he seems fine for the moment. At his 6 week check up we were told his muscle tone is pretty much the same as any child his age which is also great news as once again this is a major concern for kids born with Down Syndrome.

In general people have been pretty good to us,we have gotten the odd well meaning but annoying comment like 'God only gives special children to special parents' I have to say I hate this line of thought and don't believe it for one second,not that I don't believe in God because I do,(yes even after this happening I still do)but I don't believe for one second that we were somehow chosen for this.There have been other incidents when people have upset us unintentionally but I don't hold a grudge as people mean well and I don't know if I would have said the right thing to someone else if the roles were reversed. Really though the majority have been excellent to us and if it wasn't for my family and close friends and even for a few posters on here who I have gotten to know outside the gaaboard I don't think I could have got through the last few months.My wife has been my rock though and I think this had brought us closer together than ever.

I still get pretty low and angry and there are still tears shed but I have moved on from the black abyss I was in the first week.
I have moments where I get really jealous and envious of other parents when I see them push their newborns in their prams. I think too much about the future and what my son will become or what he will look like because of his condition. I haven't helped myself sometimes by looking up youtube and other sites and seeing some of the comments a minority leave. The word 'retard' never really sat well with me even before all of this happened but now it infuriates me.

We have spoken to Down Syndrome Ireland and they have told us when we join we will be in the Kildare branch because of our location in Lucan,this is something I think will help us in the years to come and they really seem like a great organisation.The Special Olympics also seem like an excellent organisation and without doubt will be something I will join once he is old enough. A few other things we have learned is calling kids like my son Down's children or Down's kids isn't acceptable in the Down Syndrome community. They are children born with Down Syndrome,they are not Down Syndrome children,they are not the condition,they just happen to have it.

I never in a million years thought this would happen to me,this was never a road I expected to have to take but it has happend and I am already some way down that road and I have to deal with it now.
I can't ever see a day where I will accept this,I will always wish he didn't have it,but I have almost got to the stage where I see him as my son first and him having Down Syndrome second.
Right now Eóghan is the same as any other baby,physically he is in good shape and he has no health problems and he needs all the same care any baby needs.What the future holds for him and us I don't know,I hope he will be able go to mainstream school and live an independant life but for now I have to just concentrate on him as a baby,it's difficult to do that but when I do I feel a whole ton better.

Anyway that's my story,I know what has happened to me isn't the end of the world and there are people in far worse situations.I actually also discovered  through the course of my research that Kevin Kilbane,Lee Carsley and former F1 driver Damon Hill have kids with Down Syndrome,in a strange way this has helped me deal with my own situation.I know many people don't like him and I have seen a thread on here where many people lambasted him but Brendan O'Connor wrote a excellent article about his little daughter having Down Syndrome, this also helped me cope a little.
It's amazing when something like this happens in your life you realise how unimportant some of the things in life you thought were of utmost importance.I don't think I will ever get upset with Liverpool losing anymore,though I admit it did do me the world of good seeing them beat United last weekend.!Seriously though my outlook on life has changed dramatically in the last 2 months and all for the better.

Finally,I am not writing this looking for sympathy from anyone,nor do I want it either.I'm writing this because someone I have been seeing to help me cope with this told me it would be a good idea to write everything I am feeling down and to be totally honest with it,which I have tried to be as there wasn't much point in writing this if I wasn't going to be brutally honest ,as hard as it is to admit to some of the things I have felt.I was never the best with putting words together but I thought I'd give it a try anyway.
I also have found it a great help to read blogs from people who have kids born with Down Syndrome,also there are many genuine forums (minus some of the knobs that post comments on youtube and the like)with support groups and I have found them great as everyone who posts have all experienced what I am feeling,so I thought maybe someday someone be it from this forum or not will see this post and it will help them also.
Thanks for reading.

Laoislad.

[Ulick]

Fair play on writing that laoislad. None of us are perfect and neither are our children. You child may be perceived to more different than some others but I'm 100% sure the wee man will bring you the same joys and happiness all children bring us.

"It's amazing when something like this happens in your life you realise how unimportant some of the things in life you thought were of utmost importance."

Very true...

[Bensars]

Well done laoislad, one of the most honest posts i have ever seen on here.

Wish you and your family all the best for the future and hope it brings you all the joy imaginable.

[All of a Sludden]

A very moving piece Laoislad. May you and your family have many happy years ahead of you.

I apologise in advance for posting a song by an oul Dub, but I find this a very moving and somehow apt song for this moment.

http://www.youtube.com/watch?v=YTBC7ckTWpo

[Hardy]

That's the most memorable post I've ever read on this board, laoislad. I salute your courage, honesty, good sense and ability to communicate your thoughts and feelings. Best wishes to yourself and your wife. Eóghan has already made a great start in life in getting the parents he got.

[Denn Forever]

Baby, Mam and Daddy are in good health which is the main thing.

[orangeman]

That's the most memorable post I've ever read on this board, laoislad. I salute your courage, honesty, good sense and ability to communicate your thoughts and feelings. Best wishes to yourself and your wife. Eóghan has already made a great start in life in getting the parents he got.

I'll seconds that sentiment.

[AQMP]

I think you should get a big "Thank You" from everyone on the board for posting that, laoislad.  A mighty read.  I hope you get the benefit from writing it.  Best of luck for the future to you Mrs laoislad and Eoghan.  Keep us updated with how he's getting on.

[Hereiam]

Laoislad I can only imagine what you went through on the birth of ur son. Being a recent first time father myself it would be hard to accept something like this as well. I know you will love this baby as much as other father and he will bring plenty of joy to your lives and everyone who will come into contact with him. Best of luck to you both for the future.

[Abble]

LL,
There's nothing more that I can add i think to what's already been said above by everyone.
My younger brother and his wife did get a scare themselves some time ago and their tests came back negative. But for that period and to this day we'll probably never forget some of the emotions you describe above. For a 10 day period our whole world had just came to a complete stop, something we never thought we would ever have to face ourselves, this only happened to other people. As you also mention, it was like a grieving process in some way. We were thinking that was it, my brothers life was now changed for ever. I don't think (even in any family death that we could compare it to) our hearts, souls and minds had ever been pounded like this.

Reading what you have written above has probably described perfectly everthing someone will go thru' when they are faced with this situation. The honesty and strength you have shown to write that is very humbling. I have no doubt Eóghan is in very capable hands and I wish you and your family much happiness.

[Doogie Browser]

Heartwarming stuff LL, thanks for sharing.

[deiseach]

Jaysus. After reading that, all I can think about is getting home to my wife and just holding her close. Best wishes for the future.

[gerrykeegan]

Laoislad, I tried to stop reading your post but couldnt, you havent been around for a while and I figured something was up, as soon as I started reading I knew it was from the heart. One of my best friends landed in the same boat and struggled to cope for a while, initially he felll out with another best friend  of 20 years over it.They made up and are fine again. The first few months are very tough.  I hope that writing it down will help because thats from the heart and thats where it tests you most. The very best of luck to all three of you.

[Fear ón Srath Bán]

Inspirational stuff laoislad, and I hope from here your road has nothing but pleasantly surprising turns.

[thejuice]

That's the most memorable post I've ever read on this board, laoislad. I salute your courage, honesty, good sense and ability to communicate your thoughts and feelings. Best wishes to yourself and your wife. Eóghan has already made a great start in life in getting the parents he got.

I'll seconds that sentiment.

Likewise,

Wishing all 3 of you the best.