Thursday, December 31, 2009

The Sheer Wonder and Joy of having a child with DS

Ok, I have been asked about this. And the truth is, I have been pretty harsh on this blog. Not because it is primarily about the bad, but because I come here to vent/cry and let it all out. Then, I move on.

So, today is a new day, and I am going to put in a bit more effort with the positives. This may seem a bit jilted, because I am going to try and answer the question about the wonders and joys, rather than just spilling my guts so to speak, so please bear with me.

Having had 7 children, I have been through all sorts of ups and downs with them. And, now that 5 of those children have been/are going through the teenage years, I am getting to the point where I am starting to reap both the rewards and the punishments of my parenting skills (or lack there of!)

While it is true that my older girls will have more choices ahead of them in life, it is also true that some of the choices they make could cost them dearly. I hope and pray that they do not get involved in some of the truly scary things out there like the classic sex/drugs/alcohol scenes. I see them struggle with making adult decisions that could affect them for the rest of their lives. I see them worry about what their friends think/say/do, and where they fit in.

As they get older, they become more aware of who their true friends are. Yet they continue to make wrong choices due to peer pressure. Their faith gets tested in ways I never imagined. They start to question everything. It is all part of growing up. But it is a loss of innocence. A loss of the wonder of being a child.

BUT, and here's where one of the biggest joys comes in, Samara won't loose that innocence and wonder. She is extremely unlikely to go down the drug route. Sure, she will go through some of the teenage stuff, and go through rejection issues, but, from what I have learned, she won't be likely to let that rule her life. She is likely to always keep the innate ability to come to Christ as a 'little child'. Something the rest of us loose along the way.

During the night, Veritee woke up (something Samara never does unless she is sick). It was so hard to comfort her. She was pretty good and all. But with Samara, I can just hug her, and her whole body just relaxes into mine. She absolutely LOVES hugs. Admittedly, sometimes she goes a bit overboard with her vampire kisses, and hair pulling - her way of getting you closer - but her enthusiasm for cuddles is awesome! But Veritee just doesn't do that. My other kids were like that too. A short cuddle was fine, but then there was other stuff to do and they wouldn't stick around for long:)

Samara has this amazing ability to touch the hearts of everyone she meets. She is so sociable. People just gravitate towards her. She is always so aware of people, and will sit there for ages 'talking' to them, watching them, etc. In fact, at playgroup, she is totally smitten with her teacher aide, and would much sooner talk to her than do stuff!

In our society we put way too much emphasis on IQ, when something that the world is lacking in is EQ. Well, our kids certainly bring a huge amount of Emotional Intelligence into our world. I don't know exactly what it is, but they have the most incredible people skills. And they love unconditionally. A pure, sweet love that is so much more than the superficial love that we see so much of today.

When each of my other girls met their milestones, I was proud and happy. But when Samara reaches hers.....well the joy is indescribable. It brings tears to my eyes every time. I just absolutely burst with pride and joy! I have seen the struggle that goes with learning a new skill. I have felt frustrated when she has been frustrated. But, oh, the joy of reaching each mountain top! It is an emotion that goes beyond all others I have experienced as a mother.

I have also found the whole experience really fascinating. Our other kids all grew and changed so fast, I bearly had time to register each new thing as it happened. But with Samara I get to sit back, watch, and enjoy the ride. I have learned so much about all the steps that go into acquiring a new skill. Who would have known just how important all those seemingly pointless things a baby does? It really is amazing to see it all unfold in slow motion, and with the guidance of her therapists. We really do miss so much in the development of our 'regular' kids.

When I had my other girls, I was pretty much 'on my own'. I had to muddle through learning all the skills I would need to bring them up. But with Samara, the help and support is incredible. She has a lovely Physio, and Speech therapist who are constantly there cheering us on. Her teacher and teacher aide at the Woody Point Special School are both incredibly lovely ladies. Every health issue she has, I have a miriad of professionals I can discuss them with - a lot harder with the other kids - they seem more willing to listen to Samara's problems than with the others.

I have inherited a whole new family. Because, that extra chromosome links us in a mysterious way to so many people around the globe, who have experienced that extra dimension in our lives. We come from all walks of life, and yet we share a bond that goes beyond anything else I have found. There is something amazing about finding others who just 'get it'. I can't explain it really, but those of you who have experienced this will know what I mean.

I have learned so much about myself. Not all of it good, but all of it worthy. As in, I have been changing, for the better. The value I put on life, on others is increasing. I have always been a caring person, but somehow, in the last year something deeper has been happening in my heart. My capacity for love is growing.

My bond with Samara has been strong out of necessity. Whenever I didn't feel like being up to the parenting task with the others, I would opt out emotionally. But with Samara, I have to be there. I have to put the effort into doing her therapy, playing with her, singing to her, whether I feel like it at the time or not. And that is a good thing. It stops me from withdrawing and sinking into further depression (something I have battled with all my adult life). And it strengthens the bond between the two of us.

Whenever Samara sees either Michael or I, her whole face lights up. She is so excited to be with us. She hasn't reached that 'ho-hum,I'd rather be doing other things' stage that most kids her age have reached. I love that she loves us so much!

I really do hate the health issues she has. But even these have a bright side. They make me appreciate every minute of her life. Because I worry about all the things that could happen, and because I have 'met' people who have lost their little ones, I really value the time I have with her. We have been really blessed, in that she has no heart issues, and I do worry excessively about her breathing issues, and the upcoming operation (more on that in a separate post), but I do like the way that these worries help to underscore and accentuate my love for her.

She has the most gorgeous eyes. How often do you get to see a child who has stars in their eyes? Well, my little girl has them. They are adorable!!

My life is more 'real' since Samara became a part of it. The things that really matter seem so much clearer. Sure, I still have plenty of unworthy hangups, but my ability to get past them is improving. And my ability to stand up and fight has improved. Sometimes I have to face issues that I would have let slide with the others. But no more. Now I have to get past my own insecurities and push for medical help, therapies etc. I am becoming a stronger person.

Another, unexpected advantage has been that I have gotten to see Michael in a new light. I tend to get really fed up with his attitudes and anger issues. He tends to be a bit of a 'grumpy old man'. But with Samara, I see his countenance changing. He relaxes. He laughs. He plays. He loves. He is the father to her that I wish he was with the others. Maybe, his heart will change toward them too, as he learns to have a fathers love for his baby daughter. He never had a decent role model. But, somehow, in one of those unexplainable ways, this little girl is showing him the way.

I could go on and on. I guess I already have. And like I thought it would be, this post has ended up a disjointed mish-mash! But I keep on rambling because I just can't find the words to describe the stirring in my heart. I keep hoping I will hit on it. That I will be able to put in writing the love I have for my little girl. But it is beyond anything that can be expressed in words. I wish that I could lay out those feelings for you. And that is why I wish everyone could have a T21 baby. Because there is no other way, than to experience it for yourself.

The Truth Hits Hard

Veritee is staying here at the moment. Her mum, Kerrigh is in the hospital with complications in her pregnancy.

For those of you who don't know, Veritee is the youngest of Kerrigh's 6 girls (well, almost the second youngest of 7!) She was born at 30 weeks gestation, one week before Samara. They were due a day apart.

So, we met at the Royal Women's while our children were in the Intensive Care and then Special Care Nurseries, and we were at Ronald McDonald House.

Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.

Back in April, we went to stay with them. The girls' were 5 months corrected. I was petrified that I would find it hard seeing how much more Veritee was doing. But the truth is, Samara was holding her own pretty well, and Veritee was experiencing some delays. Now, don't get me wrong, I did worry about Veritee because, over the months Samara seemed to actually pass her in a lot of things. But, at the same time, it did make it easier to deal with when Samara wasn't doing too bad in comparison.

Well, as it turns out, Kerrigh was suffering from an anxiety disorder, and Veritee simply wasn't getting the stimulation she needed. Which, is actually good news as far as Veritee goes, because she has been getting a lot more of that stimulation lately.

But, today, while being overjoyed for Veritee, I was hit with a fresh wave of grief for Samara. Watching Veritee crawl, pull herself to stand, say quite a few words etc has been a harsh reminder that no matter how much Early Intervention we do, no matter how many dollars we spend on alternative therapies, no matter how much we pray, the truth is, Samara will always be left behind.

And it hurts. It really really hurts. I hate to see my baby girl sit there watching Veritee scooting around everywhere, with a real look of longing in her eyes. She wants to follow - to join the exploration. But she is stuck. She can move a little bit, but it takes her so much effort. I just want to cry out IT ISN'T FAIR!! Why does everything have to be so hard for my sweetie?

I know I have to get past this. If I have an attitude about it, she will end up with an attitude about it. For her sake, she needs to accept the way she has been designed. Because she was designed. She is not a mistake. We all have our crosses to bear. But for some reason, I wish I could take hers from her.

And yet, I do know how blessed we are to have her. A part of me wishes everyone could experience the sheer joy and wonder of having a baby with Down Syndrome. I find myself wishing all my pregnant friends would have a baby with T21. Is that bad? (of course, I would wish for them to have none of the medical issues that go with it!)

Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.

Tuesday, December 15, 2009


Have you ever felt totally left out. Like when you wonder if you have some form of leprosy or something. Like people just don't seem to like you.

It reminds me of school. When friends were hard to make. When you just can't seem to fit in, no matter how hard you try. Somehow, whatever social skills are needed just seem to elude you.

I guess it's the Aspergers traits I can see in myself. I find it hard to make friends, but I don't really understand what I am doing that turns people away. I genuinely care about others. And I do have some great friends and neighbours. But I still feel so much like an outsider. Like everyone is sniggering behind my back or something.

As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected.

Did you ever belong to a group of people, who all seemed to click, but you were sitting on the outside desperately trying to be a part of them? A group where everyone gets invited to a special event except you? Where, for all intents and purposes, you should be as much a part of the group as anyone else. But something separates you?

What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.

Am I really that horrible to be around?