October is Down Syndrome Awareness Month
Friday, October 31, 2014
October is Down Syndrome (DS) Awareness Month in the United States, and I just want to take this opportunity to mention it here today. I am a part of a support group of parents who have children with DS. This group is amazing as we have a mentee-mentor relationship where the mentee is a new parent with a newborn with DS. Even though we hardly know each other, we bond through conversations about our little ones with DS and our other children too. So, a friend was wondering why there have been less mentees lately. The explanation she was given was that there have been less referrals from hospitals and that could be due to more abortions of unhealthy foetuses. This info is not yet verified, but oh, I felt so sad when I heard it. I am praying for all those foetuses that this is not true! And for all the parents whose foetuses are suspected to have DS, I pray that you will have faith and carry on your pregnancy!
It is not that simple, you may say. Yes, I agree, and I know that. If you would look through my past posts about dear sweet K who has DS, you will believe that I have my fair share of trials with her.
In 2011, I broke down when I received the call from her paediatrician that K was confirmed to have DS. I spent many months reading up and finding out how to be a parent of a child with DS. I was afraid of this unknown parenting path. I struggled with her feeding issues (still am!). Our family almost lost her three times when she was critically ill at the paediatric ICU. Now, we get very uptight when one of us in the family falls sick, as that means a higher risk of spreading the germs to K. And not to mention, the additional financial stress that ZY has to carry. We do not have any insurance to cover all her therapies, medications and rental of home therapy equipment, as well as the doctor's visits and hospitalisations.
Sometimes, when the going gets tough and I have to manage all her therapies and hospital visits on top of coping with Ch and L's tantrums, I break down and cry secretly. When people try to encourage me by saying that I am a special mom chosen by God, it didn't feel that special either.
In my rebellious mode, I ask God. Why does it has to be me? Why didn't He give K to someone else? Someone else who has a stronger willpower to bring her up. I am just a simple mom with ordinary capabilities, and I don't think I can bear the challenge that is set before me.
I have no answer to that and I hope that God will reveal it through time.
But there are some things I realise over the past three years - I have drawn closer to Him and Heaven is more real now. During the most challenging periods where we could only pray for her recovery and hope for the best, a part of my heart was calm. I knew that God was watching over her and He will surely carry us through all those heartaches and tears. Seeing K each morning now, is a reminder for me that this is another day of blessing for my family.
I also penned down my thankful thoughts in these posts:
I'm thankful for...
All about K: She is THREE!
Excuse me, is she a Down's baby?
Recalling that moment when my gynae suspected that K might have Down Syndrome, I am so glad that he respected my decision to stop any further testing. He did not pressure ZY and I to even consider aborting her. There are too many burdens to bear in life, and I am thankful that I do not have to bear the guilt of aborting one of my own. On the day when I finally meet my Maker, I can also say to Him that I have done my best within my limitations, to take care of His little one who was placed in my arms in 2011.
In 2011, I broke down when I received the call from her paediatrician that K was confirmed to have DS. I spent many months reading up and finding out how to be a parent of a child with DS. I was afraid of this unknown parenting path. I struggled with her feeding issues (still am!). Our family almost lost her three times when she was critically ill at the paediatric ICU. Now, we get very uptight when one of us in the family falls sick, as that means a higher risk of spreading the germs to K. And not to mention, the additional financial stress that ZY has to carry. We do not have any insurance to cover all her therapies, medications and rental of home therapy equipment, as well as the doctor's visits and hospitalisations.
Sometimes, when the going gets tough and I have to manage all her therapies and hospital visits on top of coping with Ch and L's tantrums, I break down and cry secretly. When people try to encourage me by saying that I am a special mom chosen by God, it didn't feel that special either.
In my rebellious mode, I ask God. Why does it has to be me? Why didn't He give K to someone else? Someone else who has a stronger willpower to bring her up. I am just a simple mom with ordinary capabilities, and I don't think I can bear the challenge that is set before me.
I have no answer to that and I hope that God will reveal it through time.
But there are some things I realise over the past three years - I have drawn closer to Him and Heaven is more real now. During the most challenging periods where we could only pray for her recovery and hope for the best, a part of my heart was calm. I knew that God was watching over her and He will surely carry us through all those heartaches and tears. Seeing K each morning now, is a reminder for me that this is another day of blessing for my family.
I also penned down my thankful thoughts in these posts:
I'm thankful for...
All about K: She is THREE!
Excuse me, is she a Down's baby?
Recalling that moment when my gynae suspected that K might have Down Syndrome, I am so glad that he respected my decision to stop any further testing. He did not pressure ZY and I to even consider aborting her. There are too many burdens to bear in life, and I am thankful that I do not have to bear the guilt of aborting one of my own. On the day when I finally meet my Maker, I can also say to Him that I have done my best within my limitations, to take care of His little one who was placed in my arms in 2011.
"Down syndrome will always be a part of our lives, of course, but it’s just that: a part. It’s a flower in our garden. A sentence in our love story. "
And so it is.
Most of the time now, I forget that K has Down Syndrome. In my eyes, she is a sweet and loving child who has touched our lives, and bonds us together.
She is my child. Not a Down Syndrome Child.
Lastly, to all the doctors out there, may I boldly urge you to encourage the daddy or mommy you meet today, to carry through the pregnancy of their unborn child with DS. They just need that encouragement to realise that they will be doing the right thing.
*******
[update on 27 Oct 2015] The video below features Karen Gaffney who is the President of Karen Gaffney Foundation, a non-profit organisation dedicated to championing the journey to full inclusion in families, schools, and the community for people with Down Syndrome. She says,"Every life has value. Every life matters, regardless of the number of chromosomes we have." - Karen Gaffney
What are your thoughts after listening to her?
Dear Friend, if you have reached this post because:
you were searching for more info on parenting a child with Down Syndrome,
you are looking for a support group for parents of children with Down Syndrome in Singapore,
you need some hope and encouragement in your parenting journey of your child with Down Syndrome,
these are a few of the support groups (that I know of) that you can join in Singapore:
1. Down Syndrome Association of Singapore - DSA aims to provide support to families and caregivers, help a person with Down Syndrome to lead a normal life and contribute to the society, and help integrate a person with Down Syndrome into mainstream society. You can also visit their Facebook page.
2. Singapore for Down Syndrome, a closed group on Facebook - This is a FB closed group for parents of children with Down Syndrome in Singapore. Please email Grace at squirrelwee@gmail.com if you wish to join the group.
3. a close-knitted Whatsapp group chat for Mommies of children with Down Syndrome - Entry to this group is by invitation and recommendation. You can email me at simplylambchops@gmail.com to find out more.
10 comments
Mary, this is my first time in your blog and I'm already bookmarking it!
ReplyDeleteSaluting you with much love! Thank you for sharing your thoughts in your parenting journey, your faith is an inspiration to many!
Sad to say, current medical practice is to describe a termination of a pregnancy as 'treatment for Down's Syndrome'.
ReplyDeleteThank you for sharing your parenting journey! You are such a strong mum!
ReplyDeleteYou are such an amazing mum! This is definitely not an easy journey but your faith and love for your child is so inspiring. She is blessed to have you as her mum! :)
ReplyDeleteSuper strong mama Mary. Let me know if there's any way I can help you with the DS awareness project you mentioned you want to embark. I'll do what I can to support.
ReplyDelete"There are too many burdens to bear in life, and I am thankful that I do not have to bear the guilt of aborting one of my own" - WORD.
ReplyDeleteI salute you for carrying on. God bless you and your family always.
You are a strong mother and I salute you for loving and caring for your child. Thank you for sharing your journey with us.
ReplyDeleteMary, I'm always touched by your love for K (and your family), and I'm thankful that God placed K in such a beautiful home. Inspired and encouraged by your faith and tenacity!
ReplyDeleteThanks for being my friend, Mary, and to share with me your life and fakiky matters over kopi. Missed those brief but memorable Tuesdays!
ReplyDeleteLuv,
Shirley
Hi mary,
ReplyDeleteI just saw your post and many of the things you said i can relate to. I am a mother of one year old baby boy and am glad i read this!