Wednesday 5 September 2012

It's a Sad Day!

Cuddles in Mummy and Daddy's bed
I'm feeling like a bit of a bad Mum today. Felix was playing around the coffee table; climbing up and down and just generally been the busy boy he is. He slipped and fell, and hit the corner of his eye on the table. Poor little guy; it broke his heart. He's pretty resilient though, and after a few snuggles with Isaiah he looked up and signed, "eat". Typical boy! Food makes everything better. The bruise near his eye is swelling up beautifully. It's going to look pretty impressive by tomorrow I think.

Watching TV with Isaiah
OK, so I was already feeling lousy that Felix got hurt, but it didn't stop there. When Nathan got home, Felix was sitting up on our bed with us while we were catching up on the events of the day. He finished playing with Daddy and giving him cuddles, when he came over to me to give me a hug. I scooped him up, but lifted him too high and he hit the opposite side of his head on the end of the bed. Poor kid! He now has matching bruises on each side of his head. The second one isn't quite as bad as the first one, but already has a bit of a lump. I guess today was his initiation into toddler-hood. He's almost 2 years old and, like most little boys, I'm sure it will be the first of many bumps and bruises (hopefully not assisted by me next time!)

I was sad to read a friend's post on Facebook today (she has a son with Down Syndrome who is the same age as Felix). She mentioned that the new blood test, available to screen for Down Syndrome in pregnant women, has been released worldwide today. It will now be possible for women, of any age, to be tested to see if their baby has Down Syndrome through a simple blood test in the early weeks of their pregnancy. From what I have read, this test is meant to be very accurate (approx 98%), and will make termination of the pregnancy a lot simpler due to early detection. Essentially, what this means is that people with Down Syndrome could almost cease to exist in years to come. The termination rate, which is already around 94% worldwide, now has the potential to rise even higher. What a tragic day!

Poor baby with his bruised eye :(
For many years advocates for, and people with Down Syndrome, have fought for equality and acceptance. The introduction of this test is like turning back the clock. It is like saying to people with Down Syndrome that society will accept them if they have to, but if they have the choice to make it so they are never born, then that would be better. As a parent of a funny, clever, loving, cheeky little boy with Down Syndrome, I know just how much our lives have been enhanced by having him. He has taught us how to love unconditionally and so very deeply. He has taught us patience and showed us how to slow down and enjoy life. We have never laughed so hard, or cried so many tears of overwhelming pride. I wouldn't change a single thing about him. Would I take away his Down Syndrome if I could? No way! It's a special part of who he is. It is a sad, sad day for those of us who love someone with Down Syndrome.

6 comments:

  1. I couldn't imagine a world without Jacob, he is my Hero, my strength. When things become too much or my Depression lurks around the corner Jacob's smile makes it all go away. I look at him and think of all he has been through to be with us, fighting to live during a difficult pregnancy, open heart surgery and all the little blips that come with Down syndrome. I read this article and feel sad thinking of a world without such amazing and unique people. I chose not to have the testing done, a decision I will never regret. God gives the unique and amazing to the Parents that need them the most, I was honoured to be one of those Parents. Jacob chose me to be his Mummy, his confident, his protector, his advocate and his friend on his journey through life. I would never have seen such beautiful things till I had Jacob.

    I pray there will always be Parents like us who choose to let the Man upstairs decide on the child you recieve and be honoured with his choice. Maybe you might even be chosen to have a unique child to bring you so much more than you could ever imagine......

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    1. Cilla, as you and I know, our little guys are perfect gifts. They might be wrapped in their own unique packaging, but it makes them even more beautiful! Thank you for sharing your thoughts x x x

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  2. How very sad :( and where does it stop? With tests to see if your unborn child is deaf, blind or predisposed to cancer? So we can dispose of human beings that might cause us inconvenience in our perfect lives or so more vulnerable mums can be convinced their child will be a drain on them & society & never excepted? There was a man who already had the support of millions for the perfect race and we called that genocide. I cannot imagine such a sterile world empty of all our extra sunshines and blessings. If parents could be educated that the perfect child is one you get to love & share your life with our world would truly be blessed. xxx Samantha Salt

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    1. Perfectly said! Where does it stop? Since when has it become OK to attempt to eradicate an entire group of people from the face of the earth? Felix is our extra sunshine, and blesses us more than it's even possible to say. I will never stop being thankful that he has come into our lives! I'm even more passionate now about educating people about Down Syndrome, so they will know that having a child with Down Syndrome is not the end of the world, it's a beautiful new beginning. x x x

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  3. I was also feeling sad when I saw the original article via the IDSC Facebook page. (I loved the response from MamaK and was pleased to see that the article author had replied, although that doesn't make the implications any easier to digest)

    As someone who did choose to have a prenatal diagnosis and still went on to have our beautiful baby, I just hope that other parents find the strength to get past their initial sadness and realise what a bright future lies ahead. As difficult as it was to receive the DS diagnosis, I wouldn't change our decision to go ahead with the amnio - it just meant that we were better prepared and were ready to welcome our beautiful boy with love and excitement. It's more important than ever that medical professionals are educated on how to respond to patients who receive a positive test result and give them a well-rounded picture of life with Down syndrome.

    Look forward to changing the world with you and our beautiful boys x

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    1. The author's response to the letter he received was very humble, I thought. Nice to know he was willing to take responsibility for an article which was terribly written!

      I think if medical professionals were trained to give a balanced view to people who have had a positive result from a prenatal test, it would enable more people to continue with their pregnancy and feel hopeful for the future. Lets hope education for professionals will be introduced simultaneously with the new test.

      Did you receive balanced information when you received your prenatal diagnosis? Just curious because our Geneticist could only tell us all the negatives. He had nothing positive to say at all. It's my hope that there are some out there who are doing the right thing.

      I'm glad we, and our boys, can help change the world together x x x

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