Dakota's Pride

I've just had the delight of watching "Dakota's Pride" which Girard Sagmiller very kindly let Down's Heart Group have a copy of.  If you haven't seen it, I would recommend you try to get hold of a copy as it's a wonderfully uplifting and honest piece about Girard finding out about Down's Syndrome and the expectations for his son Dakota.  It's available on Amazon.

Amongst many others it features clips with Brian Skotko, whom I have only recently come across but already hold in extremely high regard.  He has used his personal experience of growing up with a sister with Down's Syndrome and brought that to his work as a doctor in paediatrics - I envy those parents who get the diagnosis from him, because I cannot imagine a better or more positive person to recieve that news from.

In "Dakota's Pride", there is a brilliant section where Brian talks about people with Down's Syndrome, the possibilites and what they bring to a family.

Can people with Down's Syndrome drive cars today? Yes.

Can people with Down's Syndrome get married? Yes.

Can people with Down's Syndrome hold jobs, get into the National Sports Hall of Fame and be an accomplished violinist? Yes.

People with Down's Syndrome are shattering our expectations, but the true magic, I remain convinced nestles in the small accomplishments that exist every day.  If you have a child that doesn't go on to be a concert violinist, he's going to have some other magic, some other treasures that will happen on a day to day basis.  And how lucky are you the parents to be able to find these every day. 

So let's not treasure the big accomplishments, the true highs happen on a day to day basis.

I think my reaction is summed up brilliantly by my long time friend Kathy Ratkiewicz commenting on Amazon's website, in her capacity as Vice President Down Syndrome Family Support and Advocacy Group of Michigan.

I watched the most amazing documentary last night..Dakota's Pride.

I highly recommend it.  The documentary is about one family's search for answers about Down syndrome.  Like many of us, they were taken by surprise when their child was born with Ds. they went through the usual stages of  grief, then decided to educate themselves about Ds.  There are family interviews, interviews with young adults who have Ds, some doctors, a pastor, therapists and lots of scenes of people with Ds. there is a great segment with a singing group of young adults with Ds singing and signing a song (tissue alert;-) especially for the longer segment at the end.

Too many good comments by the people interviewed to list,,, well worth the price and well worth the time it takes to watch it (over an hour). Excellent for new families too.  I  wish that doctors could watch it.  I think that it might very well change their minds about what life for and with people with Ds really is like.

 

Positive publicity just before Christmas

Here in the UK, Next have just run a competition on Facebook for child models.  Parents were able to enter their children online and voting also took place online with anyone being able to vote once for any child, even if they were not a Facebook user.

 The competition ran for about a month and about half way through I became aware of two children with Down's Syndrome who were entered, I thought this was a great chance for some positive publicity for our kids, so I decided to make as many of my friends in the Down's Syndrome world aware so that they could vote for them if they wanted.

About a week later I was told about another entrant with DS and then another, so that by the closing days I was aware of 9 entrants who had Down's Syndrome.  Sadly it was a bit too late to rally enough support for all of them, but there were lots of wonderful comments about them all on my Facebook page and I'm sure you'll agree they are all gorgeous!

The top 100 finalists at the close of the competition are all being invited to a photo shoot at Woburn Abbey on December 21st and two them have Down's Syndrome and both have had heart surgery - isn't that a wonderfully positive message.  I'm really excited about this, especially as I am going to be lucky enough to go along to Woburn to meet them on the day.

Congratulations to both Hannah and Harvey.  I know that only 2 of the final 100 will be chosen to model for Next, but you did really well to be in that 100 and I hope you are going to have a wonderful day at Woburn.  I am going to do my bit by trying to get some press coverage for the final so hopefully even more people will get to see your beautiful smiling faces.

The five stages of grief or are they the five stages of change? Does it matter?

Just the other day I saw a posting about this open letter on a forum.

Open letter to parents facing a diagnosis of down syndrome

I thought it was very good, as did most people who responded, but this particular comment from J caught my eye.

I thought the letter was good but I so wish people didn't refer to "grieve for the baby you thought you were going to have". To me you grieve when someone dies and I never felt my baby died. I certainly felt fear and I went through a re-adjustment process and it was a tough road with lots of tears and fears but it was much more about getting my head around this new life we would now lead (Holland instead of Italy Welcome To Holland by Emily Perl Kingsley) and not about grief or death.

These responses from S and A got me thinking as I have experienced both being told my son had Down’s Syndrome and then his loss a few months later .

S said - You make a really good point, so I looked up the definition of grief online. As I thought, although it's commonly associated with death, it's not exclusive to it. The definition is "keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.".


And the five stages of grief, according to the Kubler-Ross model on Wikipedia, are:


Denial - "This can't be happening." (Maybe they got the diagnosis wrong)
Anger - "Why me? Who is to blame?" (Did I do something that caused this? What caused it? What's to blame?)
Bargaining - "Just let me live to see my children graduate" (Just let me child not look *too* like the others / so long as my child's not *too* delayed)
Depression - "What's the point?" (My child isn't going to achieve very much anyway, so what's the point of fighting everything?)
Acceptance - "It's going to be okay." (My child brings so much joy, he is happy and beautiful, and, besides, academic success doesn't guarantee happiness, so it's all okay.)

A said- The 5 stage of grief are equally used as the 5 stages of change


The change ones go:-


Denial - "I'm sure I parked my car here"
Anger - "Oh **** some **** nicked it"
Bargaining - "If I just go away and do xyz, when I come back it'll be there"
Depression - "Oh **** it really has gone"
Acceptance - "I guess I'd better call the insurers"


The model can be applied to all sorts of behaviours and not just grief and it's a very useful one to help new parents understand what's happening to their feelings and emotions.

These got me thinking about whether or not I went through the same kind of feelings after being told that Daniel had Down’s Syndrome and after losing him and actually I did. The thoughts that went with each were different of course, but the underlying stages were the same.

Down's Syndrome diagnosis

Upon getting the diagnosis I definitely went into denial, immediately thinking they must be wrong. Back then I knew little about Down’s Syndrome other than people with it looked different and were born to older mothers (I said I knew little), so my reasoning was as it was my 29th Birthday, I was way too young ergo it must be a mistake.

Then I pretty quickly realised that although we needed the blood test results to prove it, they were unlikely to have said anything unless they were sure, so it must be true in which case what had I done to cause it? I remembered having a couple of glasses of wine at Christmas before I knew I was pregnant and taking some Paracetamol for a headache – could that be it? But that seemed a pretty extreme result for such small actions, especially when I knew mums who had smoked and drunk a lot more than that throughout their pregnancies and had perfectly healthy babies. That left me with some kind of payback or divine retribution for past misdemeanours, but I was fairly convinced that if I’d done something bad enough to warrant such a severe punishment, I would at least be able to remember it.

I think I got to the bargaining stage fairly quickly as we got the diagnosis of his heart and bowel problems at four days and then it didn’t matter what was wrong with him as long as they could do something about those so that he would live. He came through his colostomy surgery and was transferred back to our local hospital to grow before they could do his heart surgery and the bargaining changed to a waiting game. Depression followed pretty quickly on from that as we fretted daily about his lack of weight gain and it began to look as if he would probably be in hospital for the first year of his life, but then the decision was taken to do a temporary heart op.

I remember being terrified that he wouldn’t come out of theatre, so when he did I finally began to believe that everything was going to be ok – acceptance. Little did I know that just a few weeks later I would be going through the whole process again.

Losing Daniel

This time the denial came when we arrived at the hospital after a call just after midnight. We knew that it was bad for them to have called us because so many times we had been told “we nearly called you but then he picked up”. But even as we drove through the early morning fog, me sat in the passenger seat with tears streaming down my face it never crossed my mind that by the time we got to the hospital he would be gone. I couldn’t comprehend what we were being told, we couldn’t possibly have been through all that we had in those 14 weeks for it to end like that. Even when I saw him and held him, it didn’t seem real and I just couldn’t get my head around it.

Next came the anger, although not anger as such but a need to understand what had happened, how just when everything had seemed to have turned a corner and he was finally gaining weight and getting onto lower oxygen levels that it could all change so quickly and dramatically. We even agreed to a post mortem to get answers and I was so frustrated when it didn’t prove anything conclusive, all they could offer me were suppositions of what may have occurred. I wanted facts!

I don’t really recall much in the way of bargaining, there didn’t seem much left to bargain with to be honest. This terrible unthinkable thing had happened, my son had been taken from me and I just wanted be given some form of understanding of why my family and I had had to go through all the heartache only to lose him at the end. It all seemed so very, very unfair.

Then came the depression, it was bad and I think the only thing that got me through was knowing that our eldest who was still only 18 months needed me. He was still a baby, his world had been turned completely upside down for the past 3 months and he could not manage without me, so I had to go through the motions if only for him. I have to confess that as far as I was concerned my husband just didn’t feature at that time, we dealt with our loss in our own different ways and at different time. It was only when we realised that that was what was happening and were able to accept that that was a normal process, that it didn’t reflect either of us feeling or caring any less than the other, that we were able to share our grief together.

And finally the acceptance that we couldn’t change anything, the worst imaginable thing had happened, it couldn’t get any worse and we had no option but to move forward with our lives.

It was hard and it took a long time, in fact sometimes I still think I go back through the depression and acceptance stages occasionally, usually around Daniel’s birthday and anniversary. For a long time I felt guilty that I didn’t bond immediately with him after birth like I did with his big brother, I thought it was because of the Down’s Syndrome, but eventually after the birth of number three I accepted the truth. Partly it was because the birth of your first is different because you don’t know what to expect, but mainly because my first was easy and straightforward whereas Daniel was face up which made it more painful.

Then I had a retained placenta, so instead of lovely cuddles and natural bonding, he was given to his dad and all focus was on me. I ended up in theatre and by the time I came round, he was in Special Care. Before I got to see him again we had been given the diagnosis, so when I really got to hold him properly for the first time, it was a surreal situation with alarms going off everywhere and me in a wheelchair with a drip in my arm. Hardly the best scenario.

Strange how emotions can playa round with your mind and make someone who is normally quite logical think the most illogical thoughts. I mean in moments of depression and sadness in the past, I have wondered if we lost Daniel because I didn’t love him enough, didn’t accept him and for one fleeting moment actually thought about leaving him in the hospital and going home to my ‘perfect family’ without him. Yet for years on his birthday or anniversary I have written poems about my feelings and surrounded myself in constant reminders of him by becoming involved in the Down’s Syndrome world, which clearly is not the most logical thing to do in those circumstances.

So yes, finally I have acceptance. Acceptance that my reactions and feelings at diagnosis were ‘normal’; that we might have made different choices had we known how things would pan out, but that we did what we thought was best for both our children at the time. And most importantly that I did love my little boy with all my heart, I was just too scared to acknowledge it in the beginning because underneath I was terrified of losing him.

And finally acceptance that he gave me the greatest gift that anyone could give me, the passion and desire to try and use my experience to help other families and perhaps that was the reason for it all.

What brought me here?

Back in July 2007 I wrote this piece for an online site and when I decided to start a blog, it seemed an obvious place to start and to be the blog name.

I guess for most people the ‘Meaning of Life’ is all about having enough money to live the life you want: have a nice home; nice car, go on holidays, have kids if you want, go out etc. and basically life is just a continuation of that, constantly striving to maintain and improve on what you have. You may occasionally be touched by outside influences, a major disaster perhaps, but generally life just continues along the same path and you are largely unaffected by things outside your immediate circle. Sometimes though, something major happens in that inner circle that makes you re-evaluate what is important and can have far reaching consequences on your perception of the ‘Meaning of Life’ - for me that something happened in August 1989 following the birth of my second child.

Prior to that I was a wife and mother, striving to get the best for my family, keeping the house clean, looking after our son, making sure he was fit and healthy, had nice clothes and toys. Our second baby was due and I had planned a short stay in hospital for the birth followed by a quick return home where we could continue our idyllic existence as a family of four. It even seemed that it was all going to work out better than planned when I went in to labour a month early in the early hours of my birthday – who could have asked for a better birthday present!

It couldn’t have been further from the truth! By the end of the day we had a baby in Special Care and we had been told that they were sure that he had Down’s Syndrome. The next few days were a blur, lack of sleep, plenty of tears, desperately trying to get my head around the diagnosis and the fact that it could happen to someone who was only 29. Worst of all was learning that like 47% of babies born with Down’s Syndrome, our little boy, Daniel, had congenital heart defects which would require open heart surgery when he was a little older.

The following weeks were like being constantly on a roundabout never able to get off – there was one problem after another with Daniel: he needed surgery for a bowel blockage and ended up with a colostomy; he wasn’t gaining weight so had to be fed by a tube down his nose; he needed oxygen constantly and then he had to have a temporary heart operation to help him grow until they could do the full repair. All this time he was in hospital, either locally or in London and we were travelling back and forth to see him and yet trying to maintain as normal a life as possible for our older one.

Needless to say the ironing and housework suffered badly and I started to fret about that until a friend pointed out that it would all still be there when things settled down and my priority had to be the children. That I think was the beginning of my change in perspective on the ‘Meaning of Life’ and over the next few months it was to change forever.

Suddenly and quite unexpectedly, Daniel lost his battle for life in November 1989 aged fourteen and a half weeks. Despite how ill he had been it was something that I had never contemplated and it was such a devastating occurrence that even now I'm getting emotional as I sit here and write about it. Neither my husband or I had ever had to arrange a funeral before and yet here we were organising that of our baby boy – it completely went against the order of nature.

It was a tough time, friends and family tried to be supportive but unless you have been through a similar experience you really can’t imagine what it’s like. I lost my dad when I was only 14 and as an only child a lot fell to me to support my mum - that was hard but believe me nothing like losing a child. To make things worse my husband and I found that we were coping with the grief differently and in different time frames, which put a strain on our relationship until we were able to recognise and accept that it was normal for that to happen.

Fortunately I had already discovered Down’s Heart Group, a support group for families with members who had heart problems and Down’s Syndrome, and they linked me with some other bereaved parents. Here I found people who could genuinely appreciate what I was going through and talking to them was a great source of comfort in those early months – I guess this was about the time that my final rethink on the ‘Meaning of Life’ took place.

Fitting back into ‘normal’ family life just wasn’t an option, this terrible thing had happened and whilst I couldn’t dwell on it, neither could I just carry on as if it hadn’t occurred, that would have been like denying Daniel’s life and as tough as it was there was no way that I could do that. So a bit of a life change was required! I started worrying less about the house being spotless and spent more quality time with our eldest but I also needed something to keep my mind active. I realised that talking to other parents had helped me so perhaps I could use my experience in some way to help other families – helping Down’s Heart Group seemed an obvious path.

That was over 17 years ago and I am still doing it. Over those years I have met some fantastic and inspiring people with Down’s Syndrome, some truly amazing parents (including one family who have twins with Down’s Syndrome and yet are the most positive people you could meet). I’ve shared highs and lows with families and yes, the loss of one of their children is an emotional reminder that can be hard as it brings back so many memories. Yet as we approach what would have been Daniel’s 18th birthday, I wouldn’t change any of it.

It’s been a tough road to travel and I know there are still hills (if not mountains) ahead to be climbed, not least August 2010 when I hit 50 and Daniel would have been 21, but life now has a new and different meaning and I have Daniel to thank for that. Yes I still work and strive for a comfortable life for my family, but I have a different view on what really matters in life and whilst I can’t change the world on my own, I hope that in a small way I am able to help others whose journey through life may be harder than mine.

So what is the ‘Meaning of Life’? Well I guess for me now it’s about accepting diversity in people, valuing everyone as an individual and trying to help others in any way that I can, which doesn’t have to be huge monetary gestures because small acts of kindness can mean so much more. And I guess most of all it’s about appreciating what I have and the things that I have experienced rather than worrying about things that I’ve missed out on. My initial reaction to Daniel's birth may have been that it was a disaster, now I know that it was a blessing - he made me realise the true 'Meaning of Life'.



Down’s Heart Group is a UK national charity which offer support and information relating to heart problems associated with Down’s Syndrome. Their website is www.dhg.org.uk where full contact details can be found.