What lessons have you learnt from your beautiful child

Hey everyone. I know there is so much information to learn about Down Syndrome. We have so much else to learn also.

What do you think your child has brought to your life? Our perspective of life is a whole lot different I'm sure you would agree.

Share some stories with us in regards to the things you are greatful for about this beautiful child.

What special moments have you had with them so far?

Unconditional love. I guess this is something that we learn from all our children but I think with Jirah it goes a bit further. I've learnt that I can love someone with a disability. I'm not the best of communicators so communicating with someone who can't communicate well has always made me feel awkward. But now I know that there's so much more to communicating than just looking and talking. I've learnt to appreciate time and I'm still learning patience!!

Cas

I learnt in those early day /weeks I was still a very judgmental person even though I thought I had worked through all that, I didn’t know that person was still in me. I really feel like that has past now and I’m grateful for that. I have learnt that person I thought I was, I have become.

Having Aden also gave me back, my other son. I can see now just how much his [personality is more to do with genetics’ and more so his Aspergers. And no I’m not making excesses for him.
I really feel I gained two son the days after Aden was born.

Life really does revolve around my kids and I am happy about that.

Here is a little story I once wrote

Absorbing Aden (thanks to Leah from Down syn, who helped me in one word say what I was feeling-absorbing)
I just had to share this moment, I had put Aden down, for his morning nap. When I heard him sobbing (this is how he calls me, when he needs me) quietly through the monitor. As I walked into my bedroom I seen he had rolled over onto his little tummy, not at all how our little boy likes to fall asleep.
As I picked him up, turning him, to face me, as he smiled , he melts my heart.

It hits you all at once!, I cant find the words that could compound the feeling in one, so I’ll do my best to explain it.
Please be patient as I fumble my way through.

It’s as if with a signal smile his eyes says to me “Mummy I love you, I knew you would hear me and come, I know you love me now as much as I love you, I feel your love mummy, thank you.

I’m filled with, this overwhelming sense of peace and love from this little boy. It feels warm, comforting, reassuring, soothing as well as healing, calming, yet encouraging and uplifting. I realise what a gift Aden’s life is to me and this world.

It’ so overwhelming Tears trickle down my cheeks, not from sadness. But from a love that is so unique, one would think it would be exclusive to heaven.
Yet hear I am on earth a place that I often feel is the most destructive place to be.

How lucky am I, that god blessed me with a baby, a baby who has Down syndrome.
My life as a child was spiritually, destroying, I have been able to move past all this and have survived in this sometimes cruel place. But only now through Jesus gift of love to me have I felt real healing.
My life has changed forever.

I've learnt that life goes on, no matter what s@#t happens in between
I've always had unconditional love with all my kids, so.........
Amarli, simply is "Gods favour"

Thanks Ladies, why did I know you 3 would post first lol .. Kath what a wonderful story. Thanks for sharing with us all. Sometimes I just love to step away from the medical stuff, and look at all the other things Flower/TS brings me. I just wanted to here from as many of you, which validates that there is more to this beautiful child we have.

Well, we have been on this DS journey for almost 13 years now. We have learned lots of things!

Andy has bought into my life a whole knew way of thingking. He has taught me in some ways, that the little things don't matter. You know when people describe a person with DS, it's all about the physical features, and limited abilities. But they don't matter! What makes Andy who he is, is what he can do, not what he can't. It doesn't matter that he has a large gap between his big toe and the next one, or that he has a small bridge on his nose or that he has a large tongue and small ears.

But then he has also taught me that other little things are amazing! Like when he learns something new. Every little achievment that he makes is celebrated by our whole family.

He has bought to our family, an understanding that there is really no such thing as "normal" That every one is such an individual, and has their own unique qualities.

I've learnt not to sweat on the small stuff. I've learnt that there is so much more to life than being a high achiever in academics.

As a family we have learned a lot about patience and perseverence. I beleive that Andy has taught my other two children so many valuable lessons about human nature.

Sporting achievements with Andy are an amazing highlight in our lives. You have no idea how proud I feel when he competes in mainstream sporting events. The encouragment and support that he receives from his peers is simply amazing. They cheer him on and he laps it up. He always tries his hardest and is oblivious to the fact that he may have just come last in a race, by about half the distance. He is so proud of himself, and that's all that matters!

I think there is probably a lot more but I am a bit tired tonight! so will leave it there for now.

To look at Logans abilities and beyond the disabilities, honestly the smallest thing with Logan will send me to tears(happy tears) like today for example he ate half a donut (Logan really doesn't eat solid food, long story). i've offered him this maybe a 100 times and today he decided to give it a go , WELL i bawled and then grabbed the video camera , now i know i wouldn't have reacted that way with my daughter or other son.

But i also wanted to add Logan's situation has also bought out an acky side of me where i can see i lack in empathy, a parent from say our playgroup will be whining about their childs got a cough or runny nose and ohh whoa is me...... well i feel like telling them to harden the F%$# up , and get over it . Now that is just not me or it wasn't me , but i feel like screaming when your childs had 5 major operations in 4 years when you've spent months in hospital and endless specialist appointments , then get back to me and i'll feel your pain ......i usually say nothing and just walk away......... see i'm coming across all b^&chy now and again i wish i wasn't.

So yes Logan has showed me what its like to journey on the road less travelled, but its not without its bumps !

Kath i can also relate to my other son (hes 10 and has Autism) It is such a silent disability as in you cant tell by looking at him so there for he sometimes gets the whole youre just weird or too difficult label, it made me sit back and say i cut Logan so much slack yet i expect so much more from Jarrad yet he has a disability that affects his life just as much as Logan's does.
Kylie

Narelle, our boys love their sports, and of course its our dream for their little sister to be able to compete in sporting programmes. I can only imagine how good it makes you feel to see Andys peers cheering him on and to you Kath and Kylie, my beautiful friends who have rallied around me have boys with Aspergers and have been fantastic in supporting me. I feel sad in a way that even though their boys are alot older and I knew of their condition before we had our little girl, I still didn't really understand what they were going through with their challenges they have to face. I guess they've showed up for me to make me appreciate all children with disabilities even more.

Kylie, I am the same, I'm getting this hard exterior forming, that I"m becoming a nasty f!@#@!#r thinking about whining people who just go on and on about the small things. Part of me likes that I'm toughening up and she's made me so much stronger, but I'm trying not to get too carried away, that I'm scaring people away because I'm becoming so defensive too.

I think the one thing that comes to mind...and it's the same as some others here, is that I don't sweat the small stuff anymore. Can't stand people who whine and whinge about the most insignificant things. I think its because I have seen some children with severe disabilities who's lives are a struggle everyday.

Like I always say "Down Syndrome is the disability of choice" and there is a lot worse that can happen. I just appreciate that my Gracie is happy and healthy (most of the time ).

There are other things too but I really should be studying!!! Patience is one thing that hasn't happened for me since having Gracie though...I'm still waiting...impatiently

So far Blake has taught me:

1. to stop living life in fast forward mode and sit back and relax every now and again.

2. not to stress about the things that he can't yet do but watch and enjoy all the things that he can do. Everytime I start to worry about Blake not doing something new he will show me 2-3 new things that he has figured out by himself. Latest is grabbing onto your hands and pulling himself up to a standing position and here I was worrying that he isn't yet crawling then just to show off he starts commando crawling??

3. I have developed thicker skin - I was always one of those people who cared what other people thought and wouldn't dare speak up for fear of being disliked. I realise that if I didn't change how would we ever teach Blake to stand up for himself??

4. that no matter how bad life seems someone is always worse off - this really helped during the time of Blake's heart operation.

Pretty good teacher for a 15 mth old!!

Kylie

I agree with Cas on the 'unconditional love' - I love both brats the same but that love manifests itself in a more vulnerable way with Hannah - and also a more fiercely/protective way too. Both brats fill me with wonder, exasperation and exhaustion!! Hannah has made me more sensative to others - and she has also shown me some of the negatives in our society that I was blind to before. She has taught me the power of determination - because I am in awe of her tenacious spirit - so many things are harder for her - but she doesn't give up and tries over and over with good humour and grace.

I have to say that she has also introduced me to a new passion - all things DS - I enjoy reading and learning and talking to other parents in the same situatuion - I rarely feel the need to do the same re 'typical kids' - maybe because their parents are everywhere

I do sometimes wonder what my days would be like if she didn't have DS - I'd miss all you guys and your wonderful kids!! So she has brought lots of good things to my life. and brings out the best in lots of the people she meets.

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I have to say that she has also introduced me to a new passion - all things DS - I enjoy reading and learning and talking to other parents in the same situatuion - I rarely feel the need to do the same re 'typical kids'

it's funny isn't it Shelly, I feel exactly the same!

It is weird to think that if not for the common bond of having a child with DS, there are so many lovely families that I would never have come across. I have made so many beautiful friends because of having Andy

I have to agree with most things here, especially the unconditional love! To someone else, Paige may not be "perfect" just because she has that extra chromosome, but as I always say, that just makes her extra special, and we wouldnt love her any less if she had two heads! She is your typical toddler, loves socialising, playing, doing what kids do.

Also, having a child with DS has busted all those misconceptions I once had about people with DS, like its an inherited abnormality, only older women have children with DS and so forth!

It's pretty early days for us as Tuscan is not even 12 weeks yet, but already he's taught me a few important things.

I feel like I've learnt about tenderness. That strength and tenderness go well together, in fact they make wonderful partners. I've learnt that while I might need to be strong in some situations that that has to be weighted by tenderness at various points. This is important both for me as a person but also for my relationship with Jay and particularly Tuscan. Tenderness is not the opposite of strength, it actually compliments it.

For I think what might be the first time in my life I've become quite protective. Tuscan inspires a fierce streak with a boldness I haven't known in myself before. Particularly his health issues have taught me to become an advocate for him and protect him in a way that no one else can or will.

He's also drawn out a new joy that I haven't experienced previously. I'm sure this happens for a lot of first time parents but I can't help but think it has been highlighted by his challenges. His smile changes my life every time I see it. He's an amazing little fella really.

Tim, I have to say Tuscan really is. I only got to watch one of your video's (the last one) and he is totally divine!

Now on to Isabella. Isabella has taught me that whilst there is ignorance in some places, there is so much warmth that people want to share if it's brought out of them.

For example, we were walking along the street the other day and she was being just gorgeous and someone high fived her as they walked past, a hairdresser walked out of the shop in the middle of cutting someones hair to say hi to her, and old man stopped to have a chat with her. This was in within 200 metres.

The world is most certainly a better place with people like Isabella in it.

She's also taught me that there really are way more than 24hrs in a day coz otherwise I wouldn't be able to keep up with all the forums like I do

I learnt another thing today: being a parent of a child with Down Syndrome means that we share each others' children's milestones and we're really truly happy for each other. Unlike some mother's groups I've been in where it's a competition to have your child achieve everything first: walking, talking, riding a bike etc... It's really wonderful to see everyone genuinely cheering each other's kids on while they grow and learn

Cas

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I learnt another thing today: being a parent of a child with Down Syndrome means that we share each others' children's milestones and we're really truly happy for each other. Unlike some mother's groups I've been in where it's a competition to have your child achieve everything first: walking, talking, riding a bike etc... It's really wonderful to see everyone genuinely cheering each other's kids on while they grow and learn

I agree Cas, It is something that some of your frinds and family just may not understand.

But WE get it and rejoice it

caspearson wrote:

I learnt another thing today: being a parent of a child with Down Syndrome means that we share each others' children's milestones and we're really truly happy for each other. Unlike some mother's groups I've been in where it's a competition to have your child achieve everything first: walking, talking, riding a bike etc... It's really wonderful to see everyone genuinely cheering each other's kids on while they grow and learn

Cas

Oh yeah Cas...that's a good one!

It's hard to "brag" about some of Gracie's achievements to my friends/family with "typical" kids because she is doing things their kids did years ago...but I know I can come on here and you guys will be a cheer squad