What I tell myself when I am afraid my Daughter’s diagnosis of Down Syndrome

1. The first time I saw her – I saw a beautiful, smiling girl, not a diagnosis

The first time I saw Star, a saw a photograph of a 3 year old girl with a mischievous grin, kneeling on a trampoline. I saw her twinkling eyes, her freckles, and although I had read the words “Down syndrome,” I did not see a diagnosis. She was described as a chatty, bright girl who was full of energy and mischief. I read that she needed a forever home. And I wanted that home to be ours.

2. Star is a fabulous communicator

I am a doctor, so I can tell you where Star is in her language development. How this compares to her understanding and to her typically developing peers. But do you know, if I stopped there I would be missing the point. Star is great at communicating.

She is enthusiastic, engaging and bright. People want to talk to her. She is so patient if people don’t understand her the first time, she will just say it again, and sign or gesture.

I have heard people say that only friends and family of a person with Down syndrome will be able to understand their speech. That thought scares me, and as a medic my response to this is practicing speech and language over and over. However Star is developing a better strategy – making sure she has friends wherever she goes.

3. Star knows how to be genuinely happy

Star’s happiness is infectious- she literally jumps up and down in the air with joy. A few weeks ago I went away for the day on a course. As I stepped off my train onto the platform I had the greatest welcoming committee ever: Hannah and Ben smiling and Star bouncing up and down shouting “Mummy, train, Mummy”
4. Star is great at reading people

There are so many instances when Star has seemed to be able to intuitively read the situation. Star had been living with us for about 3 months and we had had a challenging day. I sat on the bottom step and put my head in my hands.

She said

“(What’s) wrong Mummy?

I said “I am tired and I have a headache.”

She climbed onto my lap and gave me a hug and a huge smile.

Then she said

“Mummy need (cup of) tea.”

She was right. I can tell you that there are many people in the world who when faced with the suffering in another, can not come up with such a empathetic and practical response!

5. I never planned to stop loving and caring for my children when they reach 18

We hope that one day Star will live semi-independently or independently near us. I believe she is capable of holding down regular emplyment. She may not leave home, she might move far away! Whatever Star, Hannah and Ben choose to do with their lives, I will not stop loving or caring about them when they hit a milestone that society deems them to have “ought to have moved out.” To be honest, right now, I am more afraid of them all leaving, than one of them staying with us.

6. Her siblings love her

One of the hardest aspects of adopting Star, was dealing with questions like.

“what about Hannah and Ben, what impact will she have on them. What if she embarrasses them, what if she is a burden to them?”

Hannah and Ben love their sister. They encourage her, they celebrate her successes, they also bicker, and at times they think our trampoline is built for wrestling contests.

6. My youngest daughter is truly one of the most brave and resilient people I have ever met….

Star has lost more people in that first 4 years of her life than most of us will loose in a lifetime. She has more reason to mistrust others, or to feel self conscious. Yet time after time, she enters new situations with a smile, she tries her best, she proves her doubters wrong.

7. When she stops being cute, she will always be beautiful 

One day Star will grow into a teenager and a young women. She will stop being my cute little girl. I could worry about how people will react to her then.

But I have learnt that Star is like a litmus paper test. How people react to Star tells you something important about them. Those that pause, take time to listen and understand her, these are the sorts of people I want in our life. People who see the beauty in others. Because, you see, what I saw the first time I laid eyes on her will always be true.

She is not a diagnosis.

She is beautiful.

 

 

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14 thoughts on “What I tell myself when I am afraid my Daughter’s diagnosis of Down Syndrome

  1. Good, beautiful and true

    Love everything you said. 2 good friends of mine both have daughters with down syndrome. I am amazed at the joy and enthusiasm they show daily for life. They are friendly. welcoming of all, and love fun. So wonderful and inspiring!

    Liked by 1 person

    1. I know what you mean about tough days. That is why I started writing. Because what I write is true and I need to make sure I am telling myself the truth on good days and on bad days. Sending best wishes to your beautiful family and hoping that today is a good day xx

      Like

  2. Your post touched me deeply.
    I can picture Star from your description and sense the deep well of goodness within her. God bless you both!
    Isn’t it just amazing that there are times in our lives we think we are ‘rescuing’ someone, when in fact they are ‘rescuing’ us? 😊
    Hugs to you and yours!

    Liked by 1 person

    1. Thank you for your comment, I am so sorry for the slow reply. One of the quotes in the adoption world which resonates with me is
      ” we do not adopt because we are the rescuers, oh no, we adopt because we are the rescued.”
      I am so grateful that God adopted me into his family. Xx

      Liked by 1 person

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