Monday, March 26, 2012

Busy weekends and not much at all really

Hannah and I celebrated WDSD in style at a local cafe.

Then we had quite a busy weekend. Hannah was asking for (or rather demanding) her friend - who is 15 to come over for a sleepover. I said I'd see what I could do. On Sat morning she came into our room for a cuddle and straight away started asking for her friend again. I texted her friend who was only too happy to come over to 'play'. Hannah was so excited she got dressed up to put on a concert for her friend and she helped tidy her room. I put out some clay as I figure that is something a 15 year old and a 7 year old can enjoy together - and I was right. The girls had a blast. It meant that Hannah missed her regular dance class for the second week in a row but was well worth it for the good it did her spirit to simply be with her friend at home. Kit had his first soccer practice of the season so he was very happy. I failed on the photo front but later on that day I took Hannah to her swimming lesson and then back to a friend's place for a birthday party. It was a boy from school and he had a pool party. Hannah was quick to get her dress off and start swimming. There were plenty of her peers who were very excited and quick to let me know that they would be happy to keep an eye on her int he pool and so I left her there (and Kit too). It is part of my 'sharing the love'. these are good families with kids who accept Hannah - if I act like looking after her is such a big deal that I can't just leave her somewhere than I think that is a bad with my heart in my mouth I headed out and left her there. As I expected she had a great time. Once she got out of the pool one of my friends went to help her get dressed - however she said that Hannah was adamant that she would do it herself and took herself off tot he bathroom for half an hour to put on a new 'party outfit'. So - mission accomplished. these families  are quite capable of looking out for Hannah - they are the ones (as well as the teachers at school) who have helped to make Hannah's inclusion so successful. It has no doubt been around their dinner tables that their children have been encouraged and rewarded for treating Hannah with the respect and equality that they do. Later on a few families stayed back for a bbq dinner while the remaining kids watched dvd. Hannah was more than happy to take herself to the 'girls only' room to watch 27 dresses - the sort of movie I don't think she has ever been exposed to before.
The next day the kids had another party to go to, this time for a boy in their year who they have known since childcare. He is just the most beautiful teddy of a Hannah decided that he would like lego and she went with her father to buy the present. We then decided on a mad whim to go and look at new keyboards for Kit as he really needs one with weighted keys if he is to start taking music exams next year. From there we picked up the team soccer jerseys for next year and headed to the party - it was lunch followed by a preview session of The Lorax. Now my guys LOVE Dr Seuss and have watched an old cartoon version of The Lorax many, many times at their grandparents house. They loved this remake. In fact all the kids sat rapt in it from start to finish and I must confess that towards the end I was a bit teary too. Anyways it was a lovely weekend - and the fact tat I then had to sit up till midnight writing reports did not stop me enjoying it. Now the bulk of my work for the term is over so I am looking forward to a 'wind down' to get ready for our midsemester break. I have booked Kit into tennis camp but I think it would be too much for Hannah - I might just sign her up for a 30 min swimming lesson each day. I think she'd like that. More photos next post... I promise!

Tuesday, March 20, 2012


Some of the Dads and Kids from the twins' school went camping on the weekend. Of course it rained - cos it's camping right? Anyhoo it was the first time my guys have been camping. There were about 16 kids and 8 dads - Phil and I discussed it and had decided to give Hannah a shot at it - we were banking on the fact that there were a couple of younger kids going and a couple of girls that she really likes too. She had a great time. Of course she was also totally exhausted with all the outdoorsiness of it and she missed her Mum but she definitely did very well - and enjoyed it. There is talk of another one some time in the future and although I don't think she could cope with more than 2 days - I do think she would like to go that was a lovely experiment to have. Boris of course had a total blast running with the pack, toasting a piglet in mud.

On Monday she went off to school happily to share her story however she did tire rather quickly and then this morning at 5am she came barrelling into our room - and started convulsing - I HATE it - I don't think I will ever get used to it. The paed seems to think that it is febrile seizures - it doesn't last long and she averages 1 a year since she was 3 or 4. When we took her temp she had one but it wasn't really high - we think she has 'spikes' that set off the seizure. Anyways she is at home resting today, still warm but hopefully no more seizures.

20 - 'normal'

Pic 20 WDSD

I prefer to use the term 'regular' rather than 'normal'. Its probably neither here nor there but it is my preference. I'm not sure what normal is really. On a whim and inspired by some other crazy special needs mama on fb I decided to do a post a day to celebrate World Down Syndrome Day - the first one to be recognised as such by the United Nations. It seemed a good idea at the time. After a while though it got hard. I want to shout from the ceiling how great my daughter is - because there are some people who see Down Syndrome as a 'burden'. I want to 'normalise' her - in the eyes of the community - and I do that partly by sending her off with all the other kids. She deserves that opportunity. At the same time these posts highlight that she is NOT 'normal'. I don't get a month or 21 days to celebrate all the different gifts, talents and torments that Kit brings to the world...
I don't need to for a number of reasons which I have been thinking about and trying hard to articulate but it still isn't quite clear so I ask your patience with this one.
Once we got the twins home and Phil had returned to work our life settled into a rhythm of sorts. We joined Lifestart (an EI provider) which gave us wonderful support and along with NSW Down Syndrome Association, put us in contact with some other great families in similar situations. Life was pretty cruisy (in hindsight!). The maternal guilt was there though - all these special needs playgroups, weekends away with other special needs mothers/families - what about the 'regular' life - that fantasy was still there with Kit, after all. And so I did a couple of things - I joined a local 'typical' mothers group - the evidence of which is up above in the many babies photo. Now I didn't know what to expect at such gatherings but the little I did was gleaned from friends who'd had kids before me and were really attached to their mothers' group friends. I thought I should give Kit a chance to mingle with a bunch of regular babies and that I too deserved a window on 'normal' parenting. The other thing I did was enlist my wonderful MILs help - I enrolled in Mums'n'bubs swimming classes - where I went in the water with Kit and Marea took Hannah in the pool in the same class. At one point my nephew Jacob also came along so that was a lovely thing to do.
The mothers group didn't really match my expectations. I didn't make any long-lasting friendships there at all. Oh they were lovely women. But I just didn't 'click' with anyone. We went to a couple of birthday parties. I went to lots of meetings in parks and cafes. It wasn't that they weren't nice women - and there was nothing wrong with their kids (well they were only babies after all - very well behaved! lol). I still run into some of these mums from time to time - and we exchange smiles of acknowledgement. A while ago it might even have been a quick 'hello' and catch up but lately it isn't even that. We've all moved on.
I do know a bit more about those kids though. I know 2 ended up getting help from Hannah's EI group because they were struggling to meet later milestones. I know one has been diagnosed as on the autism spectrum. One little one who had some digestive issues has had a pretty rocky road at school because of her medical issues. The tiny little boy is now tall and skinny and strong looking and learns piano at the same place as Kit does. It is nice seeing them around - all so different. With different strengths and weaknesses. Just like Kit and Hannah. That is why one of our mantras is "more alike than different" - cos really no-one is 'normal' (or everyone is)'s our call really and on WDSD I am asking you to go for a wider and more inclusive definition of the term - because that is closer to the reality for most kids - and especially so for those with disabilities.
And so I tend to use the term 'regular' - I know Hannah is 'normal' but she isn't 'typical' or 'regular' there are irregularities in her makeup that require a little more patience and advocacy on my part. Mostly it is commonsense but there is a bunch of characteristics (a 'profile') that is shared to varying degrees by people with DS and that it is useful to know if you are going to be able to really get to know them and relax and enjoy their unique personalities, their gifts and talents. I hope that that is something these posts have given you this March.
Oh - and as for that 'failed' mothers group. It wasn't what I might have hoped for or what other friends of mine experienced but it was important and a positive place to be ...for us the 'click' came with some of the families of children with special needs and of course the madcap parents who send their children to the same school as ours and encourage and support us on this mainstream journey....Until next year...if you see someone with DS out and about, smile and bask in the friendship on offer :)

Monday, March 19, 2012

Pic 19 - the WORLD in WDSD

Pic 19 WDSD This isn't the pic that I really wanted to show - but as the one I wanted isn't really mine I have gone with this one - for the 'world' in WDSD. This one shows my gorgeous Aussie girl wearing her French look while in Venice... the one I wanted to share but decided not to shows the very beautiful Khadooja an ex student of mine (from Kuwait) and the so cute Layal (Aussie babe) whom some of you may already know - in the 2010 buddy walk in Sydney.
Trisomy 21 is a random thing - it affects all races and although it is often associated with 'older mums' (like me at 36 :D) many Mums that I know had their child with DS at much younger ages.
Khadooja has a sister with T21. I hope that everyone around the world, touched in some way by this 'little extra' celebrates it well on Wed. I am sure that Khadooja's family will. Being touched by something like a child or adult with DS opens up many new worlds for the individual. One of my favourite quotes (cos I can relate to it so well) is from a WA book called 'Greater Expectations. Living with Down Syndrome in the 21st Century' [such a cool title]
"From the day my daughter Madeleine was born in 1992, I have been part of a community which stretches across state and national boundaries, overriding language, race and ethnicity. I have been approached by a Chinese-American family in the Te Papa museum in Wellington, New Zealand who, after a few penetrating glances, wandered over to ask how my daughter was going. Two of my daughters were with me, but I had no doubt which one they meant. I have exchanged smiles with a Korean couple in Cambodia, members of a tour group, as they and their adolescent son explored the Khmer ruins at Angor." - Jan Gothard ...and so it goes. Happy WDSD to everyone in the community - not only immediate and extended families but their friends, carers, colleagues and acquaintances too.

And my ex- student's reply:
Thank you so much my dear teacher. I love Hanna's outfit she's looking gorgeous as usual. I met Layal in 2011 buddy walk as well she's looking more beautiful and remembers me from the previous year...
For sure me and my family will celebrate WDSD as usual :).
As being an older sister to child with T21 I would love to say that I'm so thankful for having her in my life and so my family as well.. she leaves a remarkable impact in my life and brings happiness to all. I really miss her around. They are angels from heaven that bring blessings to our lives :D


Join Down Wit Dat on the 21st of Every Month!

Saturday, March 17, 2012

18 Now and Then

Pic 18 - for WDSD.
Once upon a time, not so very long ago parents of children with DS were encouraged to put them in institutions. A variety of reasons were given but the one about saving yourself from the inevitable sorrow of having a child who would never learn or become an adult comes to mind. Henry Miller, the playwright had a son with DS who was put in such an institution and who was never mentioned again - not even in his father's biography. Apparently Danny Miller did get visits from his mother and eventually before he died Henry did come to some sort of recognition of his son because I believe he inherited in the will along with his siblings. Danny's story really struck me as tragic because I guess I expected better of Miller. I am so glad that things have changed so much for children with DS. I know from experience how much they enhance our world. There are of course still children with DS in orphanages  - Reece's Rainbow is one agency that tries to facilitate adoption of these children from Eastern Europe and China.
It breaks my heart when I hear of families here in Australia who have twins like mine, one with DS but decide that they will leave the twin with DS behind for fostercare or adoption. I can't EVER imagine Kit thanking me for 'sparing' him his twin. On World Down Syndrome Day it is important to celebrate the life of people with DS because unfortunately there is still such fear and prejudice in the world. We along with the voices of those with DS are the best advocates for change. Next Wed is a small way of marking something really important. So as the time gets closer - (and I can stop having to think of these daily posts! :D) I'd like to thank everyone who has helped get ready for Mar 21 - whether it was reading a post, signing a petition, 'liking' a page or commenting somewhere in support - Thank You!
To catch a thief:
 Where did he go??

Friday, March 16, 2012

17 St Patrick's Day

WDSD - going up a little early cos Dad and I have plans for tomorrow...Holy Hannah! At work I teach social sciences - so in one of my courses the class and I explore the idea of belief systems. We begin by considering the 'great questions' such as the meaning of life, what is my purpose in life, why is there suffering in the world etc etc
There is a text on theology and Down Syndrome which I regularly look at on the Book Depository but as a small print run it is still quite costly and a risky buy in that I don't know how good it will be... Given that the 17th is St Patrick's day and my ancestry is Irish Catholic amongst the other bits and bobs - this post is to celebrate the authenticity of spirituality that people with DS or any other intellectual disability for that matter experience. Too often our minds are closed to the notion that to be 'spiritual' (and not necessarily religious) is a common human phenomena - that means it does not belong only to the 'typical' but is there for all....These photos are definitely among my favourites. If ever I doubted Hannah's capacity to faith I certainly don't now but like us all I know that she will find her own way and my role is simply to be open to how she makes sense of her world and help her as I can. For me that includes gifting her her her heritage, her birthright - her catholic tradition and faith - so how proud was I when she started dressing up as Mary! I totally loved it - my daughter rocks!

16 - Our Friends

On the topic of friends - it isn't just about Hannah's. Phil and I have met and befriended some very lovely, interesting and fun people. We have made great friends at the twins' school (love 'em!) We have cried and shared our wins and our sorrows with other special needs parents (ADORE 'em!!!!!:D - in fact I don't think I could do this without them....) and then there are the 'oldies'. Some people talk of how they 'lost' friendships when they became a parent of a child with a disability :( I am so very glad that that was not our experience at all...Way, way back when we were still finding our sealegs - more than that when we were in need of a lifeboat...Our families were stalwart and our friends (from school) would visit us - in the antenatal ward with music, food and cheer, in the general ward at the Children's hospital when Phil and I were in separate rooms with a child each cos Kit was in quarantine...and they'd invite us away on holidays too....this picture is of our very first holiday - the twins had only been home after those early medical sagas for a very brief time. I think Hannah was still on her heart medication and skinny as...and we were so blessed to have brave friends who invited us to join them at their holiday house down south...there is something so healing about being by the sea. Especially when you are totally drained yet surrounded with love.

15 - Hannah's Friends

WDSD Yesterday was rather busy - here is a photo for it. Friends are an important part of being human. When you first hear that your child has DS it is one of the things you worry about. Will she be accepted? Will she be laughed at or isolated? And the secret nightmare - will the other kids pick on her and bully her once she goes to school? Rosani has been Hannah's very special friend for a long time - in fact she is Hannah's oldest and closest friend. They have forged a bond together that operates independently of the fact that our two families have a close friendship.
This friendship has shown Hannah why friends are important and even though playing with her peers is very challenging for her at times - she loves it - and they take Hannah as she is. So today the twins and their Dad are heading off into the wilds on the kids' first camping trip - with a group of other crazy families from school - and those early lessons in friendship that Rosani and Hannah forged will be built upon some more with her peers. Friendship truly is a very generous gift.

Pic 14 swimming in the 'real' world

Pic 14 - WDSD Hannah like many people with DS and lots of kids everywhere is a really good mimic. It is one of the reasons we felt that a mainstream school was the best option for her. Keeping up with her peers is very tiring but we know that she loves a challenge - and if we don't give her a go we (& she) won't get to know what she can do. Two of her passions are swimming and dance - Hannah goes to a mainstream class for each and a class designed for people with disability for each too. She loves ALL her classes. The idea is for her to ultimately do it on her own, and one day if necessary choose HER preference. This is really important because when I advocate for Hannah to be part of her community it isn't that I am meaning that the 'real' world is made up of 'normal' people and the disability groups are outside of this - in my ideal land they mingle and intertwine as we like....

pic 13 WDSD Twins

Pic 13 - WDSD When you have twins, one of whom has DS there are a few additional factors to consider. Every day in those early times were reminders of how that extra chromosome affected Hannah. A constant comparison with 'normal'. At the same time it was also a valuable lesson in how similar my babies were and of how Hannah was well able to hold her own. Some of their differences were because of chromosomes but many were due to personalities and it is impossible really to tell which traits Hannah has because of DS and which are simply part of who she is - because she is a whole package after all :) There were a few times when I would go through the whole 'Hannah spiel' when taking them to a new group or activity - and I'd just assume that Kit would be 'fine' and we'd get there and he'd make it very clear that although his sister might just jump on in...he would not!!!! The connection between them is remarkable. They are kindred spirits - and when they play together - it still makes me smile. From an early age and still today they look out for each other - it cracks me up sometimes - like if I give Hannah a treat she will immediately ask for one for Kit too - as if I'd forget him!!! Or if I am angry at Hannah how Kit will quietly go in and 'help' her so to avert my anger. They rarely fight but there is a good dose of sibling rivalry. Theirs is very much the 'typical' twin relationship :) More on this to come....

Sunday, March 11, 2012

Premiere WDSD Post 12: Gardens

From the vault - is this one - a sort of 'bloom where you are planted' post. When the twins were 3 it was a really stressful year for us, their parents, and I think one of the things that helped us get through it was the fact that it was a fantastic year for the twins. They just seemed to blossom. It was the year we moved from our 2 bedroom workers semi into a 3 bedder bungalow. The twins moved into beds. They had a yard, a garden and a 'playroom' (the enclosed back verandah) They were so playful and really showed their sealegs. We took them to the Royal Easter Show - and they had a blast. We had good friends living nearby who called round often. The extended family came for dinner once a week. Music therapy was a normal part of life and because we were paying rent rather than a mortgage for a brief window of time we had fortnightly cleaners.... pure luxury. Ah those were the days.... this pic was used on the invitation to the twins' third birthday - at home - a 'garden party' which was an absolute hoot.

WDSD Post 11 being happy is not a crime

Pic 11 WDSD - sometimes well meaning people will try and 'comfort' parents of a child with DS by telling them that 'they are such happy people' or some such I would agree that Hannah is happy (as is Kit). So she should be the little bugger!! She and her brother are great little kids with a whole bunch of love and support around them. They aren't languishing in a Ukranian institution for example. And generally it is easier to jolly Hannah out of a bad mood than it is Kit - but whether that is because of Trisomy 21 or simply her personality - well - the jury is out on that one. I do know that she is very good at telling me I have hurt her feelings if things don't go her way. lol

WDSD Post 10 Chronic sorrow

Pic 10 - WDSD - recently I learned the term 'chronic sorrow' it's one way of discussing the parents' feelings of grief when they find they have a child with a disability - mourning the 'normal' child they were expecting. The argument goes that the grief doesn't 'resolve' like it does after a death but rather it recurs at various milestones along the life of the child. Every now and again I watch Hannah - struggling at something - to learn or to play like other kids, to communicate - and every now and then there is a wave of remembered grief. A wish that she was 'normal'. I actually don't think it is that different to mourning the loss of a loved one at all ... it just isn't what you expect to get when you give birth. And just as I would never give up the memories of loved ones who have died I'd never give up all the countless joy and love and blessings that Hannah brings me for the sake of avoiding those occasional shores of sadness. No way - that is what chocolate was invented for wasn't it?

 The response to these random shared stories has been lovely and humbling - cos to be honest I feel a bit silly writing something every day on the same topic... I worry but that new friends I have made since the twins began school will think that I have a bizarre and morbid fixation on Down Syndrome.... I know that those who are my friends with DS and children with DS will 'get it'... it is part of my advocacy for Hannah - my Mum used to say in her brutal country style way - that you had no dignity left after childbirth (and I believed her cos I was delivered by a guy she went to school with - YEEEEEEWWWWWWWWWWWWWW!!!!!!!!) but now I think that the dark humour in that statement is so much clearer to me - my mum was a special needs mama too - and I know that she'd sacrifice convention for the sake of any of her children - and my sister who is deaf in particular - because society might stare, might question you support for the 'normal dreams' of such children - but as a parent you plough on regardless, it is their right and your destiny. Anyways one lovely friend's response was so moving that I am going to repeat it here. I hope that he doesn't mind - my blogging life is much more reclusive than my fb one!

 A reply: You breathe in the grief and it settles inside, turning and twisting, chiselling away at you Unveiling itself at, should- be birthdays and Easter egg hunts, and then there are the hidden unexpected times, other people’s children first day at school, filling out football team sheets with dates of birth and resizing your daughter should be playing with them. The Faustian pact you think about, late at night, twisting thoughts and last drops from wine bottles what grim bargains you would strike. Thankfully some things are beyond me, so we accept our holy host of grief. Only now and then do tears come to the surface (as I am typing this, is one of those “nows”) The few gifted among us turn their tears into what we call art and there are those among us who stumble and are drowned in their tears. You and I blend the tears with our sweat as we j keep pushing the bolder back up the hill...

WDSD Post 9 Driving

Pic 9 - WDSD - One Christmas holidays we took the twins with my parents to Dreamworld - Hollywood on the Gold Coast. It was a lovely day. Hannah LOVED driving this car - in fact she often likes the idea of driving her own car - she tells me she wants a Van :) Now driving is not one of the typical things I expect that she will be able to do and so I am glad we live near good transport links for her to get about independently when she is older. Like so many things about this journey though I might be wrong. There are certainly some people with DS who do drive although it seems to me that mostly they are people who live in more remote areas. The benefits of Hannah not driving but living centrally mean that not only will she have more opportunities for social interaction but also that she will be naturally more environmentally friendly.

WDSD Post 8 Family

Day 8 pic for WDSD - going up a bit early cos we have Hannah's IEP tomorrow am - and in the pm - Grandpa arrives :) We have been absolutely blessed. Not just with 2 fantastic kids but with a family who have always been supportive and friends who have stood by us and new friends that we are so happy to have met along this journey...I'll put up some more pics of family and friends later on because they truly are invaluable. For now though - here is one of a man who is so very dear to us all - especially Hannah. He went along to a 'grandparents day' organised by NSW DSA and will be going to grandparents day along with Nan and Pop at school on Friday. Some families speak of the oldies in their clan really struggling with a diagnosis of DS. Their ideas reflect their generation. Many are won over by their gorgeous kids, others like ours begin with open hearts and simply follow Hannah's lead. They are a powerful force in our family.

WDSD Post 7 Reading

A catch up pic 7 (I was one day late starting) - I couldn't resist after seeing that gorgeous redhead in the Downsed link below. Both our kids have always LOVED books just as we have loved reading to them and looking at pictures together etc. It means that even though Hannah has some idiosyncracies in her reading and her reading is still in a very early level - books give her great joy. One of her favourites for me to read to her is Pippi Longstocking (thank you Karen Bevan). She also loves Charlie and Lola and of course The Monster at the End of This Book on her ipad is so much fun - it inspired a 'Monster at the end of the tunnel' game when we were in Paris. She can read simple repetitive texts on her own. For me - books give us so much - entertainment and knowledge. Power and a Quality of Life - exactly what I want for my gorgeous girl....and her brother :)

WDSD Post 6 Being 3 & 7

Day 6 - WDSD - This pic was taken by my FIL at christmas. I think Hannah was 3 - then as now she found looking at herself in a new outfit - totally entrancing. I love her smile in this one. I think 3 and 7 have been particularly magical years for the twins - they just seem to shine in my memory as wonderful and happy times for them....

WDSD Post 5 Milestones

Day 5 pic for WDSD - there are lots of milestones in a child's life and we watch for them carefully, especially if your child has a disability and is not meeting those guidelines....for me there are 2 standouts - sitting up (10 months) and walking (2 years). We worked hard on those ones...a weighted trolley borrowed from our EI team and this toy were fantastic at helping Hannah find her feet. There are of course other milestones starting school, reading a book but I don't think any of them will stand out so clearly in my mind as those two...they demonstrate the truth behind what is often said to explain Down Syndrome - 'she will get there, but more slowly'...and the more helpers especially those who make it fun the easier the road is for everyone :)

WDSD Post 4 Therapy

Day 4 pic for WDSD Once you get the diagnosis of DS you are encouraged to start 'therapy' ASAP - that includes speech, physical and occupational as well as any other specialists or health professionals you might already be seeing. The first year seems a bit full on but after a while it integrates into the rhythm of your life and you make it fun. I used to love rolling Hannah around on this exercise ball and singing pirate songs to help her body strength. She loved it too. Research shows that early intervention can make a big difference for children and their families. We were lucky and our EI team was family focussed and very good :)

WDSD Post 3 Warriors

Day 3 pic for WDSD - "your child is one of the sickest children here' are words you really don't want to hear when you are in intensive care at Westmead children's hospital. Cos children die there. After a week there we knew that, we'd seen the grieving families as we went in to sit with Hannah. Phil and I got our parenting stripes then and Hannah showed us that truly (I'm not exaggerating at all) awesome spirit she has. It's all her own and it is fabulous. Her 'zipper' is her warrior stripes - and she still takes the world on every day in her own way. PS I love how the distended tummy that was a reflection of a heart working too hard has disappeared by the time this photo was taken. And no - no photos of her in there cos even now I can't bear to think of her that way. Seeing someone else's child in the same surgery pose still makes the breath stop in my throat.

WDSD Post 2 Perspective

For day 2 pic for WDSD - at 20 weeks we found out that twin 1 HAD a major heart defect and MIGHT have DS. At 2 months Hannah had heart surgery. I took this photo of her chest the night before...the last view of her without the ''zipper". I remember the fear like it was yesterday. They tell you the surgery is 'routine' these days and success rates high...still when I took this photo the thought that I did not dare to utter was that it would be our last of her... Hannah's heart defect is one that is reasonably common in kids with DS and believe me - it is WAY scarier than any diagnosis of an extra chromosome.

World Down Syndrome Day 2012 - 21 posts

Now 11 days late - but I started these posts on fb and have decided to copy them over to my poor neglected Shams... One day late...I'm going to try for 21 photos - 1 a day for World Down Syndrome day...I will get some from the 'vault' but for now here is an early one ...