Saturday 31 March 2012

Photo Montage

The expression on his face in this one cracks me up!
I've been looking through some photos of Felix this morning (I take WAY too many photos). I thought it would be fun to post some of my favourite photos of him and explain a bit about why they are special! I hope you enjoy them.

Our Little Miracle


The photo on the left was taken a week after we were told by the Doctors that Felix had hydrocephalus (fluid on the brain) and  it was highly likely that he would not survive. It is a very precious photo to us.

The one on the right was magical. Our beautiful friends paid for us to have a 4D scan as they may have been the only photos we would have of Felix alive. There were lots of tears as we saw his beautiful little face, and watched him wriggle around.


The moment we laid eyes on Felix for the first time. He was perfect!

The Paediatrician wanted to take him straight down the the Special Care Nursery, but our Midwife talked him into letting us have a snuggle for about an hour. It was a very special time as we kissed him and cuddled him and told him how much we loved him.



Fun with his Siblings


Feeding Daniel some watermelon
Web Cam fun with Bekah
Felix loves his oldest three siblings even though he doesn't see them as often because they have all left home now :(





Kisses for Amy
I love these ones

This was taken at his friend, Elijah's, Sesame Street  birthday party.  He loved the strings on the balloons the best!

Being a little bit grumpy
Felix is always full of mischief. He is constantly keeping us entertained with his crazy faces and funny noises. He's quite the little character. I can't wait to see what he does when he's older. I'm sure he'll be on stage one day; he's already such a little actor!

I could hear Felix laughing and talking in the cot one afternoon so I went in to investigate (he was meant to be sleeping). This is what I found. A cheeky little monkey who had taken his nappy off and, being a boy, was checking out what he'd found. (Right)


Daddy time
All class Felix!
Felix has loved 'Daddy time' from when he was a little baby. He always asks about Daddy, through signing, when he's at work. He was a little bit upset this morning and had a few tears when Daddy had to leave. It's enough to break your heart to see him sitting there crying and signing 'Daddy'.

This is such a good look. Felix had been playing with the dog's lead (draped around his neck), and then crawled into the bathroom. Good parenting! (Right)

Our gorgeous little water baby


I hope you've enjoyed looking at a tiny photographic glimpse of Felix. Just be thankful I don't make you sit and look at every single photo I've taken. It would take longer than the Lord of the Rings Trilogy. You would definitely need a jumbo size Coke and an extra large popcorn!!

I'll leave you with this one. You've heard of 'Where's Wally?" This one is "Where's Felix?"
Kids with Down Syndrome are like little rubber bands. It never ceases to amaze me how flexible  Felix is!




Friday 30 March 2012

You Asked?

Could look at that face all day!
The Questions

Since having Felix I've had a few people make comments and ask questions such as:

"He only looks like he has Down Syndrome a little bit", "How badly does he have Down Syndrome?" ,"He suffers from Down Syndrome" and the real doozy, "If you could click your fingers and take away his Down Syndrome would you?"

I realise that these sort of comments are generally made by people who have never had anything to do with people with Down Syndrome and aren't meant to be rude or confronting to parents of children with Down Syndrome, but I thought I'd take this opportunity to explain my responses to these sort of comments and maybe shed some light to those of you who have been wondering the same things.

Studying a piece of bark
He only looks like he has Down Syndrome a little bit

Firstly, you can't have Down Syndrome 'a little bit'. Either you have the extra chromosome or you don't. Felix has the extra 21st chromosome in every cell in his body. The only exception to this is the very small percent of people who have Mosaic Down Syndrome (2-3%) where the 21st chromosome is only present in some cells and not all of them. Even with Mosaicism, the person is still considered as having Down Syndrome.

The physical characteristics of Down Syndrome vary from person to person. When Felix was very small a lot of people's response was surprise because to them he didn't 'look' like he had Down Syndrome. As he is getting older, people are recognising those characteristics more and more. If the physical attributes of Down Syndrome are very apparent, it doesn't mean that the person in question has Down Syndrome 'more' than someone else. If you are looking for the 'Down Syndrome' you will see it, but try looking at other members of that person's family. I bet they look very much like them.

Our poor cat!
How badly does he have Down Syndrome?


I assume by this question people are asking how severely Felix's development is affected because he has Down Syndrome.

This is not really a question that is easy to answer, especially as he is only 18 months old. Down Syndrome is classed as a mild to moderate disability. People with Down Syndrome are independent thinkers, capable of learning and developing. At what speed they learn depends on the individual. Some people with Down Syndrome will pick up things in certain areas very quickly whereas others will find things more of a struggle.

Think of it in the same way as you and I. I never understood Maths at school. It baffled me, and no matter how hard my Dad tried to explain it to me (he tried so very hard to help me with my homework), I never really got much beyond the basics. Our boys, on the other hand, excel in Maths. They have won awards and are regularly top of their classes. Give me an English essay to write though, and I'll ace it!

Just like you and I, people with Down Syndrome will have their strengths and weaknesses. As Felix grows and develops it will become clear what he is really good at and what he will need extra help with.

There are a few people with Down Syndrome I know who would be classed as having a severe disability. However, all of those I know also have other issues such as Autism and other mental and physical problems. Their additional needs are not due to Down Syndrome alone. One little girl who comes to mind has so many health issues but still gives her family so much love and happiness. They adore her and it makes me so happy every time I hear she has done something new.

He Suffers from Down Syndrome

'Suffering' is never the correct word to use in reference to a person with Down Syndrome. People are not 'suffering' from Down Syndrome.  They may 'suffer' from associated health issues which are more prevalent in people with Down Syndrome, but the extra chromosome itself doesn't cause them to 'suffer'

Being a Clown!
If you could click your fingers and take away his Down Syndrome would you?

I can only speak for myself and my family, but the emphatic answer to that question has always and will always be 'No'.

To us, Felix is who he is. One of the reasons why Felix is the gorgeous, funny, lovable little boy he is, is because he has Down Syndrome. One of the reasons why we can enjoy watching him learn new things and get so excited about them is because he has Down Syndrome. It is only a part of who he is, but it is a special part. If Felix didn't have Down Syndrome anymore, he wouldn't be Felix!


Thursday 29 March 2012

Sweet Kisses

First kisses for Mummy
First Kiss

Today Felix leaned in to me and gave me some big sloppy kisses! Not so unusual for an 18 month old you'd think; most babies have probably been giving kisses since well before their first birthday. For Felix, however, it was the very first time he'd done it!! 

I have been giving Felix lots of kisses since he was born and one of the first signs we started using with him was 'kiss', but until today he has never actually done it. Every day I have had to wait patiently for that response from him that came so early with our other children. I've had to watch other people with their babies and see how their little ones gave them lots of big, wet kisses. Until now I've had to make do with lots of big cuddles with my little man, but no kisses.

Thank you for the kisses
After my shower this morning (hence the wet hair in the photos), I was playing on the floor with Felix when I asked, "Have you got a kiss for Mummy?"  Straight away he leaned towards me, mouth wide and dribbly and gave me a big wet kiss; and then another and then another! Those kisses were worth the wait and I felt like the luckiest Mum in the world! 

No Comparison

There are so many things I took for granted with our other children. Not that I wasn't proud of them when they reached milestones or didn't notice their progress, but they learned so much so quickly that it was hard to keep up. One day they would learn to stand and the next day I would find them standing up on the dining room table!

The fact that Felix learns things at a slower pace because he has Down Syndrome could be something which would make some parents discouraged, especially if they are competitive by nature and enjoy seeing their other children be the first to do things and excel at everything. I know some parents of children with Down Syndrome who have admitted, very honestly, that they find that difficult sometimes. I haven't allowed myself to get upset over it, but there are times when I notice what other children Felix's age are doing and wonder when he will be able to do the same things. I receive an email every month from a baby club telling me what to expect Felix to be doing at that age. I have stopped reading them now, not because they get me down, but because I can't expect Felix to be reaching those particular milestones as quickly as other children and by reading them I put pressure on myself and on Felix.

Learning how his truck moves
It's really important when you raise a child with Down Syndrome, or any child for that matter, not to compare them to each other. We have 7 other children without any disabilities and they have all been different. Two of them walked at 9 months old and one didn't walk until he was nearly 16 months old. The rest of them were somewhere in between. They were the same with eating solid food, sitting up, sleeping through the night and toilet training. I refuse to even compare Felix to other children with Down Syndrome because they all develop differently as well. As long as Felix is making steady progress, I will be very happy!

Inspirational

Felix continues to amaze me with the things he is learning to do. Yes, he is learning things slower than the other children did, but he tries SO hard. Each time I sign to him now, he will make an attempt to imitate me. Sometimes his gestures look like the sign and sometimes they don't even come close, but the thing I'm so proud of him for is that he tries. 

I watched a YouTube video a while back of a girl who had come top of her class in high school. She was giving a speech after receiving her award. In the speech, she graciously thanked everyone for the recognition she had received for her academic excellence; but the next thing she said had me in tears. She explained that she had a younger brother in primary school who had Down Syndrome who, although never getting the grades in school that she did, worked harder than any other person she knew. She said that even though she studied for many hours a week doing homework, sometimes complaining about it; her brother put in even more hours to accomplish some small successes without ever complaining at all. She described him as her inspiration and said he was the one who had motivated her to be the best she could be. 

Felix is already showing that same determination and persistence and I really believe that he too will be an inspiration to those around him.

Concentrating on pushing and pulling his truck
Real Little Boy

Someone must have told Felix that now he is 18 months old, he is a big boy. Today, for the first time, he has started to push his toy truck backwards and forwards instead of just putting things in the back of it. He is also trying to climb on top of everything. He has managed to slide the kitchen door open even though I put something behind it to stop it sliding and has pushed the laundry door open to try and get to the cat food. He's quickly turning into a little whirlwind! 

Can't even explain how amazing this little boy is....what a blessing!








Genetics

Growing Up
Getting Big


The little guy is 18 months old today!! It's hard to believe that it's been that long since we started our new life  learning about what it is to love and raise someone with Down Syndrome. What a beautiful life it has turned out to be.

We have already met so many amazing babies, teenagers and adults with Down Syndrome and their gorgeous families and have learned so much from them. We have made some friendships which will last forever.

Today Felix had his first 'big boy' haircut and is looking less like a baby and more like a little boy. It's sad that his days of being tiny are getting fewer, but we're so looking forward to watching him grow.


Is Down Syndrome Hereditary?


I  have been asked by quite a few people if Down Syndrome is hereditary, so I thought I'd try and explain in a bit more detail about the three different types of Down Syndrome.

Trisomy 21


Karotype
Trisomy 21 is the most common form of Down Syndrome. It occurs in approximately 95% of cases. There is an extra copy of the 21st chromosome present in each cell. You and I only have 2 copies of the 21st chromosome whereas people with Trisomy 21 have 3, hence the name 'Tri'somy 21. That extra chromosome in each cell affects development and it's because of that chromosome that people with Trisomy 21 have distinguishing physical features and some health issues and intellectual delays.

Trisomy 21 is often linked to maternal age, but there are many children with Trisomy 21 born to young mothers. There is also study being done looking at the effect of paternal age on the incidence of children born with Trisomy 21.

Such a happy boy!
This type of Down Syndrome is not hereditary!


A karotype, which is like a photo of your chromosomes, was done when Felix was born. The result was that he has Trisomy 21.

Mosaicism


About 2% of people with Down Syndrome will have Mosaic Down Syndrome or Mosaicism. This is when the extra copy of the 21st chromosome occurs in only some cells in the body. As a result, people with Mosaicism may or may not have the physical characteristics common to people with Down Syndrome. They will be affected physically and developmentally depending on which cells have the extra chromosome.

Like Trisomy 21, Mosaicism is not hereditary!


Translocation


Translocation only occurs in 2-3% of people with Down Syndrome.


Translocation occurs when part of the 21st chromosome attaches itself to another chromosome (commonly number 14). Unlike Trisomy 21 and Mosaicism, Translocation can be hereditary. The person carrying this genetic information will have a much greater chance of having a child with Down Syndrome.

Just Extra Blessed


All of that being said, I know of a couple of families who have been doubly blessed. One of my friends has just had her second child in a row with Trisomy 21. The Doctors have told her that she was one in more than 10,000 people to have had two babies with Trisomy 21. The fact that it is not hereditary means that it was one of those medical miracles that happen from time to time. The funny thing is, she went through a grieving period when she gave birth to her first child and found out he had Down Syndrome, but she was incredibly excited when her second child was born. She knew by then the joy of raising a child with Down Syndrome!

Another lady I was reading about the other day has triplets. One of the three has no disability, but the other two are actually identical twins who both have Down Syndrome. They are about 12 years old now and all very handsome young men. Their family is very active in the Down Syndrome Community.

Loving the beach
An Extra Mention


One of our boys had a friend over yesterday after school. She wanted to come and meet Felix because she has heard the kids talk about him. I was blown away by how beautiful this girl is. During my conversation with her she told me that she has a brother with a very rare Syndrome who is 8 years old. She spoke with such sensitivity and an overwhelming pride and love for her brother. She didn't talk about the things he couldn't do, but all the things he could do. It brought tears to my eyes.

I am so thankful for our kids and for other gorgeous kids like this who are proud to tell people about their siblings, who may have a disability, but at the end of the day are their family who they love and respect.


Wednesday 28 March 2012

Fun in the sun

Love those beautiful almond eyes
Felix and I had a day of sensory play today. We drove down to our local beach which is only a few minutes away and enjoyed some fun in the sunshine.

Feeling the sand
Learning to shovel the sand
Felix has always enjoyed the sand, but previously he has spent most of the time at the beach trying to fill his mouth with it. Today, however, I could see how his play has developed. He concentrated for a long time on raking his fingers through the sand, making a pattern. He did this over and over in the same place. I loved watching the concentration on his face.

It was fun to watch him learn to use his spade to scoop up the sand and put it in the bucket or fill the bucket with shells and little rocks. He dug a hole big enough to fit his foot in and enjoyed wiggling his toes inside it. It kept him entertained for a really long time.


Loving the grass
A bit scared
After a play in the sand, we walked up to a garden near the beach for a play on the grass. Felix loved running his fingers through it. He grabbed handfuls of grass and tried to pull them out of the ground. He looked so cute with his teeth gritted together as he pulled with all his might!

We wandered up to the aviary near the beach and stood and watched the birds for a while. One of them came up close to the fence and wanted his head scratched. Felix had huge wide eyes as he watched the big bird so close to him and touched its soft feathers.

A bit further up, Felix stood against the fence and looked at the kangaroos. One of them was quite curious and came right up to him and they stood face to face for a while. Felix tried really hard to push his hand through the fence to pat the kangaroo. He made lots of excited noises. It was so cute to watch.

Felix had some new sensory experiences today that he didn't enjoy. I sat him down under a big tree and handed him a stick to hold. He looked petrified. His bottom lip dropped and he looked quite frightened. He responded in the same way to a big crunchy leaf. I'm not sure why he was scared, but I will have to make sure we try the same thing again in a few weeks. Hopefully he will overcome his fear.

Learning to stand
Exhausted!
To finish off our playtime, we went to the playground. Felix loved spinning the big balls around on the giant abacus. He practised his balancing when he realised that if he touched two different balls with each hand at the same time, they moved. Every time he got wobbly on his legs, he managed to regain his balance beautifully. I think that with a little bit more confidence he will be standing soon without holding on to anything.

By the end of the day, Felix was exhausted. Learning and experiencing new things is very tiring! So proud of our little guy. I think he will sleep well tonight.

Tuesday 27 March 2012

Chilling with my boy

Lazy days with this face = Perfect!
Lazy Days

I love days like today. Felix and I had lots of time just to hang out and play. I didn't have to be anywhere or do anything apart from some housework.

Felix likes to help with the washing. Today as I put the wet clothes in the basket ready to hang up, he pulled them all back out again. It's not uncommon for him to have a wet sock draped across his head or a pair of (clean) underwear around his neck and today was no exception. He admired himself in the mirror as he 'dressed' himself. He is getting so much more coordinated now and can pull something over his head and then take it back off again. Even something as simple as 'helping' me with the washing, is a learning experience for him.

Enjoying the wind in his face
In the Sunshine

We spent some time outside today. Felix loves the wind in his face and watching the trees move. He has been enamoured with trees ever since he was tiny. Now that he is so mobile he enjoys being able to experience the outdoors even more. He likes to crawl on the grass and pick up leaves that have fallen. It's so beautiful to watch him discover new things. I've had to  become a professional at getting things out of his mouth without being bitten by his razor sharp teeth. Why is it that babies have to taste everything they pick up?

Saying hello to Atlas
Now that his neck is much stronger we are able to use the baby sling and take him when we walk the dogs. The expression on his face is priceless as he watches the dogs run and play. He gets so excited! At almost 18 months old, there are still so many 'firsts' with Felix and each one is so much fun to experience with him. He nearly experienced his first snake as we walked the dogs the other day, but thankfully Daddy had him at a safe distance. I was the lucky one who had to try and get the dogs away from a HUGE brown snake. Felix learned how to sign the word 'snake' after that as I couldn't stop talking about it!

Mirror, Mirror

Talking to himself in the mirror
This afternoon Felix played in front of the mirror for quite a while, talking and laughing and waving his arms about. I would love to know what he is saying to himself. He is so animated. One day I will have to post a collage of photos of his expressions I have captured in photos. I'm sure he will be on stage when he's older; acting, dancing or doing comedy. He really is such a funny little boy! He's possibly a little bit vain though because we are always telling him how handsome he is. I don't think there's much doubt that he will grow up to have a healthy self esteem!

Felix fell asleep as soon as he laid down in his cot tonight. He's had a busy day. I'm already looking forward to seeing that happy little face in the morning. I wonder what new things he will learn tomorrow?




Monday 26 March 2012

I'm Back!

Crazy Busy

All concerned for Mel
I'm back! What a few days it has been!

On Wednesday, our son, Joel's, beautiful girlfriend Mel, (who is 34 weeks pregnant), started contracting 10 minutes apart so she was taken to hospital to try and stop them. The contractions got closer and closer over time. The hospital was unable to work out what was causing them and, being rural, had limited resources so she was airlifted by the Royal Flying Doctor Service to the city.

Felix and I made the 4 hour drive to the city the following day, and thankfully, after some trial and error, the hospital found a drug that stopped the contractions and gave her some relief. She was able to be discharged today after 5 days in hospital. They have been told to stay in the city until she is at least 37 weeks pregnant  in case anything else happens but will probably stay for the rest of the pregnancy. We have decided to keep a bag packed near the front door in case we need to make another trip.

Playing with his big sister, Amy
There were a lot of special things that happened over the past few days.

Family

Firstly, I got to spend some time with both of our gorgeous daughters who we miss terribly and don't get to see often. It was great to spend some time catching up with them and giving them big cuddles. They may be 19 and 20 years old, but they are as special to us as the day they were born! Felix loved catching up with his big sisters too.

Cuddles for Joel
Felix and I stayed with my parents who we also don't get to see very much. Felix enjoyed a day playing with Granny and Papa and taking walks in the garden while I rushed up and back to the hospital. It was a very special time for all of them.

Our Angel

Bekah (our 19 year old) and I got to spend some time at the cemetery visiting our little angel, Eden Grace. We bought some pink and purple balloons and made her grave look pretty. We had the privilege of speaking to a lady there who only buried her baby boy 8 weeks ago. I felt honoured that she chose to share her story with us at such a painful time. It is wonderful that through shared grief we could encourage each other.

Relief for Joel after the contractions stopped
Felix's Concern

It was amazing to observe Felix's reactions when Mel was having really strong contractions. He would be smiling and talking, but as soon as she had a contraction and was breathing through it he would go very quiet. He watched her for the length of the contraction (approximately 1.5 minutes) and as it finished he would start clapping his hands and smiling again. It was almost as if he knew what was happening. If I hadn't seen it with my own eyes I wouldn't have believed it!

Cherish Life

Something else which really touched me happened this morning as I walked to the hospital cafeteria to get myself a coffee. In the hallway of the hospital, I walked past three wheelchairs. In each one was a beautiful little girl about ten years old. Each of them had a bald head as a result of chemotherapy. They all had a smile on their face and their Mums were talking and laughing with each other. It was very confronting for me. I didn't know how to react. Should I smile at the girls and their Mums, or would that be awful considering the obvious pain they were all experiencing fighting cancers of some kind?

It was then I thought about how I feel when people turn their faces away from Felix because they see in him something they are unsure of. I knew in that moment that the right thing to do was to smile at the girls, because despite everything they were going through, they were still making time to smile and laugh and enjoy life. They were living for today!

Seeing those precious little girls was a reminder to me of how lucky I am. How blessed am I to be raising a healthy little boy with Down Syndrome? Those little girls will be in my prayers tonight. I hope each and every one of them fight that evil thing that is cancer and live long and healthy lives!

Love this Kid!
A Glimpse of the Future

As I was leaving the city today on my long drive back home I saw a man about thirty years old waiting patiently to cross the street to go to work.  I don't know who this man was or anything about him, but he made me smile. Why? I felt my heart swell with pride as I saw him standing there because he had Down Syndrome. In my mind I saw Felix standing there with his backpack on, hair brushed, keen to go to work. It made me so excited for Felix's future.

Today I am thankful again for Felix. I'm thankful that because of him I see the beauty in others that I didn't see before. Sometimes the people who are 'different' or are going through difficult times in their lives are the people who can teach us the most about patience, acceptance, love and most of all, life!

Thursday 22 March 2012

Inclusion at Playgroup

Gorgeous DS penguin cake
Felix goes to a 'regular' playgroup every Thursday afternoon. Apart from Felix and his friend Jacob (also with Down Syndrome), I don't think there are any other children who attend who have special needs. That's why yesterday was so special.

Making noise
My beautiful and very talented friend, Julianne, runs our playgroup. She is constantly coming up with new ideas to make playgroup fun for the Mums, Dads and the children. A few weeks ago, Julianne approached me about the idea of having a World Down Syndrome Day themed playgroup to coincide with all the celebrations of 21/3. I love how enthusiastic she is to raise awareness and encourage inclusion for people with Down Syndrome, especially Felix and Jacob.

An amazing cheese dip igloo with penguins made out of olives
Yesterday was just incredible. There was a HUGE turnout of people at playgroup. People I have never met before attended with their children. Julianne asked if everyone could wear yellow and blue, the Internationally recognised colours for Down Syndrome Awareness and to bring a plate of food  to go with the penguin theme or to resemble the differences that we, as people, have. She organised lots of different penguin games for the children to play and gave a lovely speech about how her perceptions of people with Down Syndrome had changed since spending time with Felix and Jacob.

Rolling around on the grass
It was a great opportunity to talk to parents I have never met before and enjoy watching Felix play with their children. The photographer from the local paper was there to take photos, so hopefully there will be another story in the paper about World Down Syndrome Day. It is great to know that people in our local community are now talking about Down Syndrome and seeing that those with Down Syndrome are not that much different to everybody else.

People like Julianne and those who attended playgroup yesterday are the ones who will make a difference in Felix's life. It was clear at playgroup that people love and accept Felix for who he is; a happy, cheeky, busy little boy who loves playing with other children and learning from them. How wonderful for these children to have parents who are raising them to show their support and acceptance of others, like Felix, who may have a few differences but are just as worthy of their friendship. Thank you to all who helped to make yesterday a fantastic day for all of us x x x

Felix holding hands with Gemma





Wednesday 21 March 2012

Tell Your Story

Excited to have friends over to play
Radio Interview

Yesterday was a wonderful day. It started with me doing a radio interview on ABC North and West for World Down Syndrome Day. I was incredibly nervous, but the announcer, Ann, very quickly put me at ease. It was a pleasure to be able to share a little bit of our life with Felix and to raise awareness in our community about Down Syndrome. Many thanks to ABC North and West for giving me the opportunity to speak. Thanks also to Down Syndrome SA for choosing me to be the voice for those in our region with children with Down Syndrome.







ABC North and West - http://www.abc.net.au/northandwest/programs/north_and_west_sa_mornings/

Down Syndrome SA - http://www.downssa.asn.au/dsssa/index.php

Felix with Sophie and Jacob
Playdate

In the afternoon, two of Felix's little friends, Sophie and Jacob, came over for a play to celebrate World Down Syndrome Day together. Both Sophie and Jacob are beautiful kids with an incredible zest for life.

Sophie is nearly 3 years old and is a gorgeous little girl. She arrived with a little pink backpack on her back and carrying her handbag. She was wearing blue and yellow ribbons in her hair. Sophie enjoys giving lots of cuddles so Felix was snuggled like he's never been snuggled before. It was adorable! Oh yes; and Sophie has Down Syndrome.

Jacob is 14 months old and has the biggest smiles. He is one of the 50% of babies with Down Syndrome who are born with a heart defect. It has been wonderful to watch as Jacob has gone from a very sick baby to a healthy robust little boy since his heart surgery. Jacob is learning how to clap his hands and can now sit up beautifully all by himself!

It was such a joy to watch the kids play together. They enjoyed sitting in the ball pit together, throwing the balls. There were lots of cuddles and laughter. I didn't see Down Syndrome as I watched them play. All I saw was 3 happy children playing and having fun just like any other children. All 3 of them are so precious.

Sophie enjoyed cuddling Felix
A nice surprise


Later yesterday afternoon, I received a phone call from a lovely lady who does amazing work with those who have Down Syndrome and their families. She called to tell me she was enjoying my blog and had watched the video we made about Felix for World Down Syndrome Day. It is always nice to hear from her, but there was a special reason why she had called me.

She went on to tell me that she had been born with hydrocephalus (the same as Felix), almost 50 years ago. She has had numerous surgeries throughout her life, but it has never stopped her from doing anything. She has given birth to children, had a career and led a full and active life.

If she hadn't told me, I never would have known. I felt so blessed that she shared her story with me. It has been a difficult 24 hours since hearing that the ventricles in Felix's brain are enlarged, so hearing from someone with the same condition who has had such a great outcome was just what I needed to hear. I feel encouraged, and much more hopeful for Felix and his prognosis.

Such precious little faces
Share your story

I feel even more compelled to share Felix's story now. Today I was on the receiving end of hearing someone else's story; a story about hydrocephalus. It was exactly what I needed to hear! I'm hoping that by continuing to write about Felix, I can be the one to encourage someone else who may be struggling with the prospect of raising a child with Down Syndrome.

I would say to all of you. Share your stories with each other. You have no idea how encouraging you may be to someone else who has been through or is going through something similar to you. Whatever life throws at us, it is always comforting to know we are not alone.

Celebrate life; and have a beautiful day!