Sunday, 30 September 2012

Growing Up

Two years old!
Felix woke up in a beautiful mood this morning, but really hungry. He had such a busy day yesterday, playing and having fun, that he didn't really eat much at his party. When I got him out of his cot at 6.30am, he started signing, "Eat, eat, eat". When I got him his porridge, he couldn't eat it quick enough.

We spent the morning reading some of Felix's new story books which he got for his birthday. He loves books so much, and was very spoilt by his friends with lots of new stories to read. I love seeing his excitement when he discovers something new. He busily pointed to pictures and signed (if he knew the sign) all the things he could see. He has some touch and feel ones which he thinks are awesome, and some where he has to lift up the flaps to see what is underneath them. A couple of his new books are interactive with different buttons to press at each stage of the story, which make noises. Tonight we read one which had sea creatures, with big goggly eyes, in the book. The eyes glow in the dark, so Nathan sat by the light and turned it on and off as we read each page. Felix thought that was pretty amazing!

Hanging out with his toy animals
Our big (or should I say, small), two year old walked everywhere today. I didn't see him crawl once!!  I was so proud of him, but also had a tinge of sadness as I realised that his baby days are almost over. He's turning into a little boy now, who doesn't need his Mummy as much as he used to. His new found independence is fantastic but, like with all of our babies, I feel a little bit sad to say goodbye to that part of his life.

Someone, from one of the Down Syndrome groups I'm involved with on Facebook, once gave a great piece of advise. She said that when you have a child with Down Syndrome, one of the most important things you can do is to make yourself obsolete. By that she meant, allow your kids to learn to do everything by themselves. If they are struggling to put on their socks, don't impatiently grab the socks and put them on their feet for them. Let them keep trying (even if it takes a long time), so they can do it themselves. Obviously some things are going to take longer to learn than others, and some help along the way will be necessary, but the ultimate goal is for them to be successful at things and be able to do them independently. In doing so we, as parents/relatives/friends, learn how to be extra patient!

Story time with Bekah
Historically, people with Down Syndrome were often institutionalised, or left in a room with nothing to stimulate their senses. Later, if they were allowed any sort of education, they were grouped together with 'their own kind' and had minimal teaching of any sort. Parents and teachers would 'baby' them and do everything for them. They were always treated as if they didn't have the capacity to learn. These days we know that kids with Down Syndrome are capable of learning to do pretty much anything they want to. It is so important to treat them the same as we would any other child, and to have high expectations. They should be expected to keep their room tidy, and have nice manners. They should be encouraged to try different sports or learn to cook;  or to do whatever interests them. They are clever and I've even heard of some teenagers, with Down Syndrome, pulling the.... "But I have Down Syndrome" card, to get out of doing something that was expected of them! Don't be fooled.. teenagers with Down Syndrome can be just as manipulative and sneaky as any other teenager! I have no doubt that Felix will try that one, one day too! :)

Nathan thought I should post this pic.
My first attempt at a dinosaur head fruit platter for
Felix's party.
Felix put on a bit of a tantrum tonight when I told him it was bed time. He shook his head from side to side and flung himself dramatically across the bed in true 2 year old fashion. I had to keep myself from laughing because I knew how tired he was and how quickly he would fall asleep once he was in bed. Sure enough, as soon as we got to his room the crying stopped. He reached out to his vaporiser to remind me to turn it on (he has it on every night as it helps keep his nose from getting stuffy), and then held his arms out to his cot to go to bed. I handed him his colourful monkey (which he was terrified of a few months ago), and his cat, which is made from a sock (it's the ugliest thing I've ever seen, but Amy bought it for him and he loves it), and he happily laid down. As usual, there has not been a sound from his room ever since. He goes to bed so well, and sleeps all night which makes this Mummy very happy!!

Saturday, 29 September 2012

Felix is Two!

So many presents...
Happy 2nd birthday to our precious little man, Felix! I can't believe he is two years old already. I was saying to a friend the other day (and may have written it here previously), that it seems like these past two years have gone by so quickly in a lot of ways but, at the same time, it feels like Felix has always been with us. It's hard to imagine life without him in it.

Today was a busy, but fantastic day. We decided to throw Felix a 'dinosaur' birthday party at the park across the road from our house. I was stressing a bit when I woke up this morning because yesterday it was so windy, I felt like Dorothy from the Wizard of Oz! However, when I got out of bed and looked out the window, there were blue skies and it was nice and still. It was still pretty cold, and there was the occasional threatening cloud overhead, but by the time the party came around, the sun peeked through just enough to take the chill off the air.

Isaiah helping Felix with the pinata
We took Felix's little plastic slide and his ball pit over to the park, because the playground there is not really suited for little kids. We also emptied his sandpit and transported it across the road and then refilled it (thanks to Felix's big brothers), and buried plastic dinosaurs in the sand to dig for. We had a dinosaur pinata, and the bigger kids painted some 'dinosaur fossils'. I carved a watermelon to look like a dinosaur head and filled it with fruit salad, and we had lots of party food. I made a dinosaur birthday cake for Felix, which he thought was pretty good. I loved the look on his face when he saw it for the first time.

Yay! It's my birthday!
Felix celebrated the day with twelve of his little friends. He seemed really comfortable with lots of kids running around and with all the noise. He played closely with some of them at different times and didn't seem scared, which was great. The only time he panicked a little bit was when we tried to get a photo of Sophie, Jacob and Felix (our three little ones with Down Syndrome), all sitting in the ball pit together. I watched as Felix's face went from a little bit worried, to full blown terror and then tears. Sophie's Nanna quickly picked him up and he snuggled in to her shoulder until he stopped crying. He recovered pretty quickly and was happily back to playing in a few minutes.

After we all sang 'Happy Birthday' to Felix, he was so excited. He clapped his hands, and then he did the cutest thing. He signed the word 'again', because he wanted everyone to sing to him again. A beautiful end to an awesome day!

Friday, 28 September 2012

One More Sleep

Felix doing his crazy face as usual!
We had a bit of a family day yesterday. Our daughter, Bekah, came for a short visit which was great. She was able to join in the craziness of the preparations for Felix's 2nd birthday tomorrow. We chatted while the cupcakes baked, and we filled the pinata and the party bags. It was the crazy chaos I have always loved about our big family. Joel came over and spent some time with his brothers, and Mel and Noah hung out and had a play with Felix, which was pretty cute! There was a lot of noise and laughter; just the way I like it!

Felix has adjusted quite nicely to being an Uncle. He's not afraid of Noah anymore which is good. He has a bit of a bossy air about him when he sees Noah now. It's almost like he knows that he is the oldest and he has to take control of the situation. He puts things in front of Noah to play with (or takes them away, if he wants them), and watches him out of the corner of his eye to check that he's happy with what Noah is doing. He sat next to him yesterday and 'read' a book to him which was really sweet. Noah just watched Felix and smiled at him with his big, beautiful smile. When we took some photos of the kids, later in the day, Noah kept turning his head back to look up at Felix which was adorable.
Reading Noah a story

I can't believe that our gorgeous little man is two years old tomorrow, and what a wonderful two years it has been! Since that time, at 19 weeks pregnant, when we were told it was suspected that Felix had Down Syndrome, our lives changed forever. The way our lives changed was incredibly beautiful. It may seem strange, but we fell in love with the baby I was carrying even more deeply than we had before. We wanted him so desperately to fight to stay with us; and he did. He beat all the odds which had been stacked against him and made it safely into the world at 36 weeks exactly.

Since then we have made new friends who have become like family, and have met some of the most inspirational children and adults with Down Syndrome. Although a few relationships with friends and family have not survived the addition of a child with Down Syndrome to our family, others have blossomed and grown to be better than they ever were before. We feel like we have a wonderful network of support surrounding us all the time, and their genuine love for Felix is overwhelming.
Our messy little man

Felix has taught us so much in his two short years. He has shown us that anything is possible, for a person with Down Syndrome, if they are given a chance. He has taught us patience and unconditional love. He amazes us every day with how quickly he learns, and how willing he is to try anything. He has shown us that people with Down Syndrome can be stubborn and bad tempered (like the rest of us), but can also have a hilarious sense of humour and an intoxicating laugh. Felix is my inspiration and I am thankful for him every day.

I look forward to kissing our little man and wishing him a happy birthday when he wakes up in the morning. He is just so precious!

Thursday, 27 September 2012

Ears and Eyes

A little bit spoilt with presents
On Tuesday I drove back down to the city (4 hours away), for the second time in less than a week. Nathan wasn't able to come with me this time because one of our kids had been sick, so it was just going to be me and the little guy. Thankfully, our soon-to-be daughter in law, Cate, had been here visiting Daniel, so she was able to drive with me. Poor girl, I think I talked her ear off (my way of staying awake on the drive), but it was really nice to spend some time with her and chat about some wedding stuff. It's all very exciting!

Felix and his little friend, Lilly, both turn two this week so we (Lilly's Mum and I), decided to have a joint birthday party for them in Adelaide. All their friends from Early Intervention were able to come and share the party with them. It was also a great excuse for all of us Mums to get together for a catch up since we all live so far away from each other. Cate was able to come to the party, as well as my best friend, Deb, and our beautiful girl, Amy. I was excited to be able to introduce them to all the lovely ladies from Early Intervention and show off their gorgeous kids.

Tomato sauce (ketchup) is the best!
We had a wonderful afternoon celebrating, not only Felix and Lilly's two years, but also the lives of all the other kids there. I have so much admiration for these children who, despite so many surgeries and health problems, have the most precious smiles and are so full of life and fun. They are all so beautiful to watch, and it was great to watch them play together and interact. Felix, despite usually being funny around other kids, was totally at ease just like he was last time he was at Early Intervention. It's pretty obvious to me that he feels very comfortable being around this particular group of kids. He's too young to understand that he, and the other children, all share an extra chromosome, but his level of comfort with them is very high. It's like he senses that they all have a common bond.

After the party, I got to spend the evening with Deb and another friend, which was so relaxing. We went out for a delicious meal and had coffee and cake after. Felix, despite having a long drive and a big play at his party, was an angel when we were out. He happily ate and drank, and read some books. It was way past his bedtime so he went into an overtired, deliriously happy mood. He wandered around the coffee shop, making friends with people along the way. He was adorable. I'm so proud of him; I can only imagine how exhausted he was. Later, I picked up Amy from work and Felix and I went to stay at her place for the night. After a bit of a play on Amy's bed, and lots of cuddles with her, he fell asleep in his cot. He was one very tired boy!
With big sister, Amy

The next day Amy cooked us a delicious hot breakfast and we headed off for the first of Felix's appointments. He had to see the Ear, Nose and Throat Specialist at the hospital. They were running a bit behind at the ENT, but I didn't mind at all because we had a surprise visit from one of the Mum's from EI with her little boy. He had to have a procedure done later in the day, so she was able to sit with me to pass the time, which was lovely. When Felix was called in, it was a fairly straightforward consult. He is always so good when he's examined and, once again, sat perfectly for the Doctor while he looked in his ears. It was confirmed that there was definitely fluid in his ears and, with all the previous ear infections, grommets were suggested as the best course of action. His operation has been booked for mid December.

Mmmmm....birthday cake!
After the ENT appointment, we said our Goodbyes to Amy. She is moving interstate on Monday and it's probably going to be a long time before we see her again. I'm so glad we got to spend some time together this week. Felix and I then headed off for his next appointment at the Opthamologist. There was a very long wait before he was seen, and I was so thankful I had thought to bring the ipad because it stopped him from getting bored. He needed drops in his eyes to dilate his pupils and, once they were in, we had to wait another twenty minutes until they had worked effectively. The Opthamologist is hoping to go into surgery with Felix when he has his grommets put in his ears, so that she can probe his right tear duct and hopefully unblock it so it stops weeping and getting sticky. She also wants to have a closer look at the Optic nerve in one of his eyes, which she isn't entirely happy with. We have to wait and see if the ENT surgeon is happy with that or not. She also said he is slightly far sighted and will definitely need glasses later on, but she thinks we can leave it for a little while.

Overall, it was a very successful trip and a welcome relief from all the little hiccups of the past week. We arrived home last night thoroughly exhausted. After a great night of rest Felix even slept in, which is pretty unusual for him; not that I'm complaining!!

Monday, 24 September 2012

Looking for the Silver Lining

Loving the bubbles
Ever have one of those weeks? This week has been one of them. It's times like this when, if I hadn't tried to find the bright side, or even a little bit of humour in things, I would probably be a crying mess. I lost my bank card (just an inconvenience, but it was the first in a chain of events). We had to have our beautiful cat put to sleep, which was upsetting for the whole family. I lost my really good camera; and worse, all the wedding photos I had taken with Felix and the Bride and Groom. We needed accommodation somewhere for tomorrow night, but the whole place is booked out (another annoying inconvenience). The bank has now made a mistake, and I have to wait another week for my new bank card (difficult when we've had a lot of travelling and expenses). Joshua (16) has been vomiting all day (and the first time didn't make it to the bathroom so I've been washing and scrubbing all day). Finally, tonight we found out that Nathan didn't get the job he had applied for, which we had all been hoping he'd get. I really hope the coming week brings us a little bit of good luck!

Drawing is tiring!
It's in moments like this, when it's best to reflect on all the good things we do have. We have our health, which is something we should never take for granted. I know so many families watching their children fight terminal illness or who are facing complications from surgery. We have 8 very healthy children (except a tummy bug at the moment), and it's something I am so thankful for. My husband has a good job, as do our three oldest children. The others all do well at school, and Felix's development is coming along beautifully. We just enjoyed a gorgeous wedding in which Felix did us so proud! We all have a roof over our heads, and food on our plates. The most important thing we have is each other; a wonderful, supportive family, who all have so much love for each other. There is an endless supply of good in our lives, but I guess we wouldn't be human if we didn't let life get on top of us sometimes! I certainly feel like it's a bit on top of me at the moment!

Tomorrow, we have to head back to the city. Felix is going to have a joint birthday party with his little buddy, Lilly (who is in his Early Intervention group), tomorrow. She has just turned two, and Felix will be two on Saturday, so we're looking forward to having all of our gorgeous kids together for a little celebration. I'll be taking the opportunity to experiment with my new, and improved, camera (slightly dulls the pain of losing the other one!)

Love that smile
On Wednesday, Felix has to see the Ear, Nose and Throat Specialist about getting grommets in his ears. Since we last saw the Specialist, he hasn't had another ear infection, but we think it's because we stopped taking him to swimming lessons. It will be interesting to see what they say on Wednesday. I would love to be able to take him back to the pool so hopefully, if he has the grommets, we'll be able to get back into it.

So handsome!
Following the ENT appointment, Felix has to see the Opthamologist. He hasn't had any issues with his eyes so far, but the Opthamologist wants to have a better look at them with a machine she has in her offices in the city. When she travels to the country to see Felix, she only has limited tools to work with and isn't able to bring any of her other equipment. The MRI of Felix's optic nerves showed a minor difference between the two of them, so it's yet to be known whether or not it will cause him any problems in future. A lot of kids with Down Syndrome require glasses for different problems relating to their vision. I'm definitely expecting that Felix will need glasses eventually because 6 out of 7 of his siblings, and his Daddy, all wear glasses. I'm just hoping it won't be until he's a little bit older because I have no idea how we would keep them on his face without him pulling them off!

We have a busy week ahead. I'm going to try and stay positive and look forward to lots of good things. Tomorrow, after all, is a new day :)

Sunday, 23 September 2012

Wedding Day

We have just got home from a very busy, very beautiful and very emotional couple of days in Adelaide. We had the privilege of being a part of the wedding of two of our friends. Felix had been asked to be a Page Boy for them. We felt very honoured and proud and have been looking forward to their wedding day for a long time.

Yesterday was the big day! Felix looked absolutely adorable in his little suit and tie, and I felt so emotional when I looked at him walking around all dressed up. All those memories of my pregnancy, and the uncertainty about whether or not he would survive came flooding back as I looked at our perfect little man; healthy, happy and completely gorgeous! To say I felt thankful, would be an understatement. I felt an overwhelming love and pride for Felix in that moment and I will be eternally grateful that Felix fought as hard as he did to stay with us.

Felix's role in the wedding was to walk down the aisle, with his little ring pillow (with Nathan holding his hand). Even though he did it perfectly the night before at the rehearsal, I was so nervous that he would completely freak out when the church was full of people on the day. I realised very quickly that there was no reason to be nervous. When the music started, Felix started walking perfectly down the aisle. He stopped every now and again to look up at the person standing nearest to him, on the end of the aisle. The smiles on everyone's faces said it all. There were 'Ooooh's' and 'Aaaah's' coming from all over the place as they watched this tiny little person lead the bridal party down the aisle. I had tears burning in my eyes. He did such a wonderful job!

The whole wedding was beautiful. The bride was stunning and the Groom looked fantastic. You could feel the love between the two of them and it was really special. We all went down to the local beach for the professional photos and I took a ton of them with my camera as well. I have never seen the sky look so amazing. There was rain in the distance but it was really warm and still, so it was perfect for photos. I had a look through the back of my camera afterwards and was absolutely thrilled with the moments I had managed to capture.

After the photos, we took Felix back to my parent's house for the night. He had been such a little soldier all day, but was exhausted by the time we got there. He happily went to Granny for cuddles after his pajamas were on, and didn't worry at all when we left for the wedding reception. The reception venue was beautiful. It was decorated with special touches put together, with so much care, by the gorgeous bride. The speeches were some of the most heartfelt I have ever heard and I would be surprised if there was a dry eye in the house. I'm so thankful we were part of their special day.

Unfortunately for Nathan and I, the end of the night was a bit of a downer. Twenty minutes after getting out of our taxi we realised we had left our camera, with all of our wedding photos, in the taxi. We immediately called the taxi company, who contacted the driver, but the camera is gone. We both felt really upset when we realised what we had lost. The camera didn't matter, but the wedding photos were irreplaceable. There were precious moments we captured, of the bride and groom with Felix (which weren't taken by the professional photographer), and it was pretty heartbreaking to realise they were gone.

As we lay down to sleep last night, we realised that there was nothing we could do; being upset was not going to help us find the camera. It was gone but it was OK. We knew there were professional pictures taken, which will be amazing, I'm sure. We'll just have to be patient and wait to see them.

This morning we went and bought a new camera. We dressed Felix up in his suit again and went down to the exact spot we had been the day before, for the wedding photos. It was freezing cold and windy; the complete opposite of yesterday, but I did the best I could to take some new ones of Felix. Sadly, the photos are missing the bride and groom, and the bridal party, but I think you'll agree that they are certainly better than nothing. I think we have one pretty handsome little page boy!

Thursday, 20 September 2012

See you Sunday!

I won't be able to do my blog for the next couple of days, because it's going to be a busy weekend with Felix in our friend's wedding. Stay tuned for some cute photos of him all decked out in his suit. I think this Mummy is going to have a few proud tears over the weekend!

The bottom photo is what I picture Felix doing at the top of the aisle!

In the meantime, have a great weekend everyone and make sure you tell those close to you how much you appreciate them :)

Boy's Best Friend

Inseparable from the start
I just picked up Felix's suit for the wedding on Saturday. He's going to look SO cute! Even though he will be two in a week, he only fits in a size 00 suit; it's so tiny (just like he is). He's also got some soft soled black shoes which tie up with a ribbon. He practised walking in them up and down the hallway today. He thought he was a bit special with little shoes on his feet. I'm still not convinced that he will be cooperative on the day, but I'm open to being surprised by him taking it all in his stride.

Starting to crawl
Today, the bigger boys stayed home from school because they were upset. We had to have our much loved cat, Brutus, put to sleep last night because he was struggling to breathe. He was getting old and had got quite skinny over the past few months, but to see him like that last night was upsetting for all of us. The boys had a chance to say their goodbyes and we took some photos of them all with him before we took him to the vet. He will be missed by all of us.

Just hangin' with my buddy
Guardian Brutus
Personally, I think our animals are an important part of Felix's therapy. In his first year Felix would push himself to crawl so he could get as close to Brutus as he was able to. Brutus would then move a bit further away, and Felix would continue to drag himself across the floor to get to him. Eventually Felix got too fast and Brutus gave in to the inevitable, and just lay there and let Felix pat him and pull him and, in recent times, sit right on top of him. He was very patient with him. Felix learnt how to be gentle, and we taught him how Brutus liked to be patted. One of the very first words he signed was 'cat' because of all the time he spent with Brutus, followed closely by 'dog' because our house is full of them too. I don't think Felix would have learnt to do some things as quickly as he did if it wasn't for our animals. He wants to be able to keep up with them, so they encourage him to keep pushing forward with his physical development. Felix and Brutus were good buddies and Felix will miss his little friend.

Peek a Boo
Felix was a bit grumpy today; maybe he sensed that we were all feeling sad, but he's also on the verge of getting sick. He seemed a bit unwell yesterday so we took him to the Doctor, and everything pointed to the beginning of a viral infection (swollen glands and a bit off his food). We've got fingers crossed that it won't develop into anything nasty, especially with the wedding coming up in a couple of days. As I've mentioned before, kids with Down Syndrome can often go from slightly unwell, to really sick within days and Winter is the most dreaded season. Felix was well and truly ready for bed tonight and was asleep within seconds of laying in his cot. Hopefully when he wakes up tomorrow he'll be happy and healthy, and ready for a five hour car trip.

Tuesday, 18 September 2012

Bursting with Knowledge

I know I'm clever!
Wow! Felix has just had a massive learning spurt! It's like he went to bed overnight and woke up with a brain full of ideas and new knowledge. He has done so many things today that we have never seen him do before!

This morning, we went through our usual ritual of feeding Felix his porridge, while we have a cup of tea and watch the morning news. One news story was talking about some people who were missing after their boat capsized in the ocean. The reporter mentioned that they were sending in the Search and Rescue helicopter to help with the search. Felix turned around and looked at us, and casually signed 'helicopter' and then turned back towards the TV. What was really great, was that he hadn't seen a picture of the helicopter; he had just heard the word mentioned in amongst a news story. It was enough to make him think,"Oh cool...a helicopter!"

Busily drawing
After his breakfast, Felix wanted to play on his ipad. I can't begin to tell you how fantastic the ipad has been for his fine motor skills. This morning, we really noticed how quickly he has learnt to use it. Instead of just banging it randomly with his fingers and opening a whole bunch of different applications, like he did initially, he now looks for a while and decides which application he wants to open. When he has opened it, he knows exactly what to do. In one of his music apps, he uses his 'pointer' finger to carefully touch each key on the piano to hear the different sounds. When he wants to use a different instrument, he knows where the 'home' icon is, so he presses it and then scrolls the page across until he finds the one he wants, and touches that one.

Climbing in his toybox
Later in the afternoon, I watched Felix pick up his wooden hoops (the ones which are different sizes, starting with big at the bottom and small on the top), and put them on the stand. The holes in the middle are quite small, and I have never seen him be able to put them on the stand unless he's had a lot of help. Today he sat there and put one on after the other as easily as anything! They weren't in the correct order, but he managed to put every single hoop on in a matter of a minute.

Another thing Felix played with today was his baby DUPLO (left over from his older siblings; I don't think you can buy it any more). The blocks are round instead of square and are designed to be much easier to put together. That being said, Felix has never been able to put more than two of them together at a time. Today he built a tower five blocks high. I made a house out of some of the blocks and handed him some DUPLO people to put in the house. He very easily put the people where he wanted them to go, and even swapped some of them around, very deliberately, until they were all where he wanted them to be.

We bought Felix a cheap, little plastic table and a couple of chairs yesterday. He thinks it's great to have a set which is just his size and has been busily climbing up and down off them today. Isaiah (14), being the 'mother hen' that he is, was worried he was going to fall head first onto the floor on several occasions, so was watching him very carefully. I gave Felix a book and some chunky pencils to do some drawing while he was sitting up there. It's the longest I have ever seen him focus on drawing. He gestured to Isaiah to draw something, and then he would colour it with his pencils. Even after Isaiah had moved on to play something a little more grown up, Felix still sat there happily drawing on his book (and the table), for ages. I love watching him concentrate; he sticks the tiniest bit of his tongue out of the corner of his mouth when he draws. It's so cute!

Two best buddies
Probably the biggest shock to us today was that Felix pretty much walked everywhere. He's been walking now for a couple of months, but he's still stuck to the security of walking in between objects and people. Today, he walked into rooms, up the hallway, and just generally wandered everywhere. I hardly saw him crawl at all; it was very exciting. Who knows? Maybe he will be able to walk down the aisle at the wedding on Saturday?

I know other parents, of kids with Down Syndrome, have had similar experiences with their children's learning. It seems like our kids plateau for a while sometimes, and don't seem to do too many new things, then all of a sudden they have a huge burst of learning, and totally blow us away with what they can do. They are constantly learning, but sometimes they do so many new things all at the same time it's just amazing! Our little guy is incredible; he is so clever and we are so proud :)

Monday, 17 September 2012

Different Paths

Can't believe he was this tiny once.... Perfect :)
I would like to say a huge 'Congratulations' to a couple of people I have met online, who have just given birth to babies with Down Syndrome. Welcome to the family!  I know you are still feeling like you are on an emotional rollercoaster. You are grieving the child you thought you were carrying, and are adjusting to this new little one, who is not quite what you expected. That is perfectly normal!! Take all the time you need to grieve and cry; to get angry and do whatever you need to do. Be assured that the love for your little one will grow over time, until it is all consuming and overwhelming! You will love that baby more than you ever thought possible; and that little one will adore you. It may be difficult to see the light at the end of the tunnel, but it is there. When you are ready, please reach out to those of us who have been through what you are going through now. We have all handled things differently, and no two of our stories are exactly the same, but we are here to support you and help you through. That precious little baby will change your life in such a beautiful way!
Head, Shoulders, Knees & Toes

I've had a couple of conversations, recently, with some people who are expecting babies. We have talked about the screening test for Down Syndrome, currently being used, which gives you a 'risk factor' as to whether or not the baby you are carrying is more, or less, likely to have Down Syndrome. Both of these people had chosen to have the blood screen. What is really beautiful about the conversations, is that these parents had already decided, prior to the blood test, that they would be accepting of their baby having Down Syndrome, if that was the case. One is an older Mum (early forties), and one is a young couple, expecting their first baby. They have both expressed that, since knowing Felix, they don't have a fear of Down Syndrome any more. They can see that he is a beautiful little boy, who brings so much joy and so much love. I feel thankful that Felix's life is being used to show others that, just because life sometimes takes an unexpected turn and a baby is born with Down Syndrome, it doesn't mean your life is over. It just means that you will take a slightly different path than the one you were walking before. There can be some obstacles along that path, but the views are breathtaking!!

Ready for bed
It's funny how life takes twists and turns. Some are very subtle and you barely notice them, and others are life altering changes which smack you in the face and turn everything upside down. I've written before about the fear I had, during my first 7 pregnancies, of having a child with Down Syndrome. I don't know why Down Syndrome was the specific thing I chose to fixate on; I mean, there are so many other things which can happen to a baby during it's development. Many things, some would say, are much 'worse' than Down Syndrome. Maybe because I had noticed people with Down Syndrome, because of their physical attributes? I'm not really sure why. It grieves me now to say that people with Down Syndrome used to frighten me!

Fast forward another ten years and there I was, in the Ultrasound room, being told it looked like my baby had Down Syndrome. Strangely, that was OK. Yes it did turn our lives upside down, but I have never been more thankful for one of life's twists! Our lives feel so full now. Yes, there are Doctor's appointments and blood tests. I've never been on first-name basis with Physiotherapists or Speech Pathologists before, and certainly never had a Paediatrician's number in my mobile phone, but I wouldn't change our lives for anything in the world. Felix is just what we needed; a tiny little person who keeps us grounded and teaches us lessons in patience and wonder every day. Nathan and I were talking the other day, and both of us agree that we can barely remember life before Felix. It's only been just over 2 years since his diagnosis (at 19 weeks pregnant), but it's been the most meaningful couple of years of our lives.

Playgroup Fun!
Yesterday I was at the supermarket, unloading my huge trolley full of food onto the checkout. I heard a young man say something to me, and turned to see a guy in his mid-twenties giving me a huge smile. He struck up a conversation with me, letting me know that he was being careful to keep an eye on where my shopping ended, and where his Dad's shopping started. Years ago, I would have tried really hard not to make eye contact with this man, or maybe would have smiled politely and moved as quickly as I could to get out of the supermarket, just because of his intellectual disability. Why? I don't really know. Maybe it is a fear of the unknown. I could never be sure. Yesterday, however, I was sad when I had to leave. We had been having a great conversation about everything from Hot Wheels cars, to whether or not the PS3 or XBox was a better console (He assured me the PS3 is the best!). He was a lovely young man, and I bet his family are very proud of him.

Thanks Felix for choosing to come into our family; you have opened my eyes to all of the beautiful people I had never allowed myself  to know before you came along!!  You have made me a better person and I will be forever grateful!

Sunday, 16 September 2012

Beach Fun

Having a dig in the sand
When we woke up this morning, the sun was shining so we decided to take Felix and one of the dogs down to the beach for a play. Out of our three dogs, we chose to take our biggest one with us. Atlas is a 17 month old Bullmastiff and, although he is getting huge, he is so gentle with Felix. We can let him off the lead and he will stay next to us; he's such a good boy. Felix thought it was great that Atlas was in the back of the car, and he kept craning his neck back as far as he could to try and see him. He loves the dogs!

Hanging out with Daddy and Atlas
It was too cold to go in the water, but Felix was very happy to dig with his spade and fill up his bucket with sand. He's very enthusiastic with the sand, and ended up with it all through his hair, over his clothes and in his mouth. Atlas ran up and back across the sand, but always slowed himself right down by the time he got to Felix and then sat himself down next to him. Felix gave him lots of pats, and even though he tried really hard to encourage Atlas to lick him on the face (by leaning towards him to kiss his mouth), Atlas was very good and didn't do it. I wish all of our dogs were that well behaved.

Felix has such short little cute!
After we had a bit of a play on the sand, we went for a walk up the beach. Nathan carried Felix, who was getting a bit tired, and he enjoyed snuggling up on Daddy's shoulder. It will be great when Felix is walking  more confidently so he can walk with us. I know he'll enjoy helping to walk the dogs and having a run on the beach himself. He takes a few cautious steps on the sand, but it's still a bit tricky when the sand is so soft under his feet. It's only six more days now until he is a Page Boy in our friend's wedding, so it will be interesting to see how he navigates the aisle. Will he walk, or crawl, or just lay down with his face to the floor and refuse to move? Watch this space!!

Isaiah called out to us earlier to, 'come quick!' He was laughing so much, but we didn't get to the room in time. He explained to us that Felix had picked up a little DUPLO man and carefully put it on the back of his little ride-on elephant rocker. He then climbed on the elephant and gave the little man a ride. When he was finished, he turned around, picked up the little man and then threw him across the room. I guess his ride was over!! Such a funny little person, our Felix!

Loving his little DUPLO people
Later in the afternoon I went into the lounge room to find Felix, sitting on Isaiah's lap, with a Playstation controller in his hands. He was staring intently at the TV, pressing the buttons and moving the controller up and down. He was convinced that it was him who was controlling the movement on the game. He sat there for a really long time, concentrating hard on what he thought he was doing. The Playstation is a bit of a 'bonding' thing with our boys. Even though a couple of the older boys live away from home, the younger boys will play online against them and still have that contact with each other. Modern technology is pretty amazing like that. Felix is in training already; with five older brothers they'll be having him playing against them as soon as he's old enough to work the controller!!

Friday, 14 September 2012

Building a Fort

Inside his 'sheet fort'
I know I'm always saying how much I love the simple activities we do with Felix the most, but it's true. There's something so enjoyable about creating a really easy activity, which costs nothing and takes very little time, and seeing him absolutely love it!

Today we made a 'sheet fort' (or a 'sheet cubby') for him in our bedroom. We draped a big queen sized sheet across the top of some of our furniture and put a few books and toys inside of it. He thought it was brilliant! Nathan climbed in there with him and the two of them played for ages. Felix alternated between sitting quietly, reading his books or playing with his cars, to laughing hysterically as he stood up and touched the 'roof' or looked out from under the 'walls'. He stayed inside his 'fort' even when we had got busy doing other things, and it kept him entertained for a really long time. I have a feeling building a 'sheet fort' is going to become a regular thing.

Sharing his fort with Daddy
Bath time is another opportunity for a fun play and we always try and make the most of it. We have nights where we add extra bubbles and make bubble hats and bubble beards. Felix has had a gelli-baff (a product which makes the water turn semi-solid like jelly), and I have also added food colouring to the water to make a coloured bath. Note: Don't use yellow food colouring because it just looks like toilet water! Yuk! Tonight, Isaiah watched Felix while I got his pajamas ready. Felix loves it when one of his brothers give him a bath, and the boys usually end up almost as wet as him, because he gets extra excited and splashes more than usual. He always has to look at himself in the mirror after his bath because he has a towel with a hood on it, with lion's ears, and he thinks he looks pretty awesome!

Wearing Daddy's hat
After his bath tonight, it was dress up time. Felix loves Nathan's Police hat and likes putting it on his own head and then putting it on Daddy's head. He's not terribly gentle about the way he puts it on Nathan's head, so poor Daddy gets lots of whacks on the face in the process. Felix has a fascination with the bird on the badge on all of Nathan's uniforms and always points at it and signs 'bird'. His sign for bird is so cute because he has such little fingers. He does it so delicately like he's talking about a really tiny bird.

One of the sweetest times of the day with Felix is bedtime (7pm). He has always been so easy to put to bed and we all enjoy his kisses and cuddles before we put him in his cot. He happily says goodnight to everyone and then giggles when we hand him his favourite stuffed toys. He often sits up and blows us kisses as we walk out of his room and shut the door. That's the last we hear from him until the morning, when we hear him playing through the baby monitor. He's so precious!

Thursday, 13 September 2012

Just Perfect!

Having Fun
After the success of yesterday, with Felix playing so beautifully in a room full of people, today was a bit of a disaster. Felix had been asleep for 3 1/2 hours this afternoon when his little friend, Jacob, came over with his Mum, to play. I decided to go and wake Felix up because it was nearly 3pm and he had been asleep for so long already. As soon as he saw that we had visitors, he clung to my neck like a little monkey and wouldn't let go. Poor Jacob; Felix wasn't much fun to play with. I tried to put him in his high chair to have something to eat, and he got really distressed and cried and cried until I lifted him out again. I went to put him in there a few minutes later and the same thing happened. I have never actually seen him like that before so it was quite upsetting. Maybe he wasn't ready to wake up yet? Rachel and Jacob stayed for about an hour and as soon as they left, he wolfed down his lunch and then crawled off to play. It's all a little bit strange and hopefully just a stage he's going through.

Cutting the Playdough
Yesterday, at Down Syndrome South Australia, was really special on so many levels. The sense of belonging was just incredible. To know that each and every person there shares a common bond through our children is such a great feeling. Morning tea was served by three young adults with Down Syndrome. They did such a beautiful job of making sure everyone had plenty to eat. One of the boys had a plate of cakes, and the other was handing out serviettes for us to wipe our hands. They were both quiet and shy, but had the most gorgeous smiles, and looked to be really enjoying helping feed the masses. The girl, who was also serving, was so much fun. She kept teasing Amy, which was hilarious. She was so confident and looked completely at ease socialising with everyone. It's such a joy to watch the older kids and have a tiny glimpse into Felix's future.

Mesmerised by the bubbles
I forgot to mention that Nathan was able to make it for the end of Early Intervention yesterday. He really enjoyed being able to watch Felix in his element, playing and laughing. He got there in time for some singing, and I could tell, by Felix's face, that he was pretty excited to have his Daddy there. I was glad Nathan had a chance to have a look around the Early Intervention room and meet some of the other parents and kids. He picked a good day, because there were quite a few Dads there yesterday which was great.

After the songs, our Early Intervention Coordinator, started up a bubble machine which created thousands of bubbles. It was one of the most beautiful things I have ever seen; massive smiles on all of the children's faces, as they watched the bubbles float above their heads. Some of them were jumping up to try and touch them, and others sat, amazed, looking up as high as they could. They were just a bunch of kids enjoying what any other kids their age would love. The only thing different was that they all have Down Syndrome. Personally, I have never seen a more beautiful sea of faces. Just perfect!

Wednesday, 12 September 2012

Early Intervention

I see you!
Felix had the best day today! We decided to drive down to Adelaide yesterday so we could go to Early Intervention at Down Syndrome South Australia today. It was the last group for the term, so it was a little celebration with all the kids who have attended throughout the term. We have only been able to attend about 3 or 4 times all year because we live so far away, so it was wonderful to feel so welcomed and included today. Most of the kids are aged between birth and four years old and are so unbelievably gorgeous! I just wanted to snuggle them all!

Love that smile
The strangest thing about today was Felix's behaviour. I have been struggling so much to get him to interact with other children and not be frightened of them, but today he was totally at ease as soon as we arrived at Early Intervention. The room was noisy and crowded with parents and children, but he had a permanent smile on his face and laughed and had so much fun. He interacted with other children even when they sat close to him and touched him. He also walked a lot, which he doesn't usually do in a room full of people. I couldn't believe my eyes! It made the day so enjoyable for both of us and it was so beautiful to see Felix relaxed and enjoying himself. It was almost as though Felix had a sense of belonging and it was the most precious thing to watch.

Another special part of today was that our eldest daughter, Amy, was able to come and spend the two hours with us at EI. Felix was really excited to see her and gave her so many cuddles. Amy hadn't seen Felix walk before, so she loved being able to see him toddling around. It was beautiful to see the smile on her face as Felix entertained her with all of his hilarious antics. He may only be a tiny little 9kg (19.8lb) boy, but his personality is certainly huge, and Amy loves it! She does stand-up comedy fairly regularly, and we always say that she and Felix will have to team up for a comedy show when he's a bit older. Amy thinks that would be fun, but is pretty certain that Felix would upstage her. I think she could be right!

Playdough with Amy
Our other daughter, Bekah, made it for the last few minutes of EI, so she got to have a bit of a play with Felix as well. He loves his sisters and even though he doesn't see them often, he doesn't hesitate to throw himself into their arms as soon as he sees them. Our family may be spread out all over the place now that the older kids have left home, but the connection and love is still there just as strongly as ever. We're so thankful for that.

I had the opportunity today to speak to lots of other parents and enjoyed hearing about how their kids are progressing. It's really exciting to share the pride we have for our children, with each other, and celebrate milestones together. It's also great to be able to pick up bits of information from others which might be helpful for Felix. I came home with a list of fantastic apps for the ipad, a brand new laminator to make some flashcards (thanks to the lovely Catherine), some more information on signing and some new communication tools. I'm so thankful for the wonderful people we have come to know since having Felix; they have become like family to us. Thank you all for a brilliant day!