March 22, 2017


To the Brokenhearted on World Down syndrome Day

As World Down syndrome Day rolls around on 21st March (3:21), I love watching my social media feed full of amazing individuals rocking their extra chromosome.

But amongst the joy is the heartbreak of knowing that our son with the almond shaped eyes is no longer lighting up our social media feed in real time.

And I know that there are others who must be finding it difficult to celebrate WDSD too.

For those who wholeheartedly love and celebrate the person in their family who has Down syndrome, but who are currently struggling with aspects of daily life associated with the DS diagnosis.

For those who have recently received a Down syndrome diagnosis for their baby, prenatally or at birth, and may be feeling scared and sad as they process the news. Be patient with yourself.

For those who received a Down syndrome diagnosis for the baby you carried within you, a baby you were ready and willing to love and protect but who passed away before you really had the chance. I know that no words of mine can fill the empty space in your arms.

For those who will forever love a person with Down syndrome who is no longer in this world. You have been lucky enough to know the light and love and hugs that only someone with Down syndrome can give, and now you bear the grief of living without them. You accepted the role of advocate, defender and cheerleader, and sometimes it’s hard to watch the children with almond eyes grow up when your child cannot. Know that you will always be a part of this T21 tribe.

For those with the broken hearts, my heart is with yours this World Down syndrome Day.  It’s okay if you don’t feel like celebrating this year.

Image by Lily Kate Photography

I am so grateful for your thoughts and comments, so please reply below.

  1. Such a difficult space to inhabit for you, Annie – joy for a day filled with hope and awareness alongside heartache that Nicholas is not here to celebrate it with you.

    Sending so much love. ❤

    1. Thanks lovely Angie. And thank you for your beautiful post on FB last night. How cute are those two lovebirds?? Made me smile 😀

  2. Typing this through tears. I don’t even know what to say except that this is perfect Annie. Nicholas made the right choice when he chose you to be his Mumma.

    Love to you and yours x x x

  3. Thank you. I love my child but I can’t celebrate her diagnose. It’s not something I wished for her to have or for anyone. I used to be more cheerful but her new diagnose, infantile spasms, just took the cheer out of me. Everybody says children with DS are social, loving … My child is so delayed she’s six months behind. She has poor eye contact, and poor social skills. I’m not ready to celebrate yet. Yes I want to raise awareness but I feel that I need to heal first.

    1. It can be a difficult journey, and it’s hard to watch the differences between your child and their peers. How old is your daughter? Sending much love and peace and healing to you, Roxana x

  4. Annie, I have been meaning to comment for some time. This post comforted me so much. I really did not feel like celebrating WDSD this year. Thinking of you 😚

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