additional needs, down syndrome, down's syndrome, equality, family, inclusion, love

I am sitting here on the eve of Seb’s birthday, his 7th birthday. Somehow in my head he is still 4 and his brother is 2 – for no other reason than I cannot believe he has been earthside for 7 whole years.

And I find with all my children it is the night before their birthdays that I am the most reflective. I guess like birth itself, sitting on the cusp between pregnancy and parenthood, tomorrow will be filled with noise and commotion, excitement and visitors, whereas tonight is relatively quiet and calm.

I’ve always maintained that I am glad I didn’t know Seb had Down’s syndrome before he was born. I still believe this. The fear I had when told of his diagnosis is not something I would have wanted to have dealt with at 12 or 20 weeks pregnant, whatever I chose to do.

But as I sit here this evening, I wish I could travel back to the 15th February 2008 and tell me at this exact moment what lay ahead. I wish I could talk to the relaxed, contemplative me, about to go into labour with my first baby, all about Seb.

Because being told after the event is kind of like training for a 10km race and then finding as you set off that you’ve entered a marathon. You’ve no idea how you will get through it, you haven’t put in the groundwork and you just can’t see how you will ever cope. But it’s too late. Panic inevitably sets in and you reach for the jelly beans trying to take control, but failing.

If I could only sit with me for an hour before those contractions began, I would tell myself that I was going to be just fine. That I was having a baby, a little boy that would teach me so much. A little boy that would bring immeasurable joy to my life and enrich it just the same as any child. That he would ignite a passion in me that I had not yet experienced and would give me the same massive highs and lows of parenthood as anybody. Pride and pain, worry and guilt, love and protection. That he would be the typical boy, in our typical family, that I had always imagined.

I wish too that I could have somehow shown me the wide mouthed beam on Seb’s face this evening as I tucked him in bed and he knew it was one more sleep until his birthday. The excitement this afternoon when his brother came with me to the supermarket to buy the party food and found a Star Wars Hot Wheels car that he just had to get “because Sebby will LOVE that”. And the depth of love I have just put into making his birthday cake, something that does not come naturally or easily to me, a cake that I’ve no doubt will look like a dogs dinner, rather than a football pitch, but a cake made with the deepest feelings of love and provision because Seb is such a massive football fan.

It’s such a cheesy line but it is the truest thing I could tell the former me….

“Having a child with Down’s syndrome is the gift you never wanted, but you wouldn’t give back”

But, of course, I wouldn’t have believed me. Then.

22 thoughts on “Then…….”

  1. Your writing is so full of love, I am so envious of the time you have with your perfect little boy. When my partner and I found out our little boys diagnosis she decided to end the pregnancy. It is what she had to do. I could not do enough to persuade her things would be okay but I still feel the guilt of not doing more. I miss the little boy I never held so much. I wish him here with me every second of every day.


    • Oh my goodness what a bittersweet comment, i am so sorry for your loss. I am pro choice in these things. But choice that is informed. I am sure my story would be similar to yours had I know pre-natally, something I am forever grateful for not knowing. Thank you for taking the time to write your lovely comment x


  2. dderbydave says:

    Just read your BBC Ouch article. Kids have a lot to teach us when it comes to seeing the person before the disability.
    Just clicked Follow.


  3. Marmot Biscuits says:

    Hi, I have just read your BBC Ouch article and felt it so true to how I feel about my son that I felt compelled to comment. My son has a disability, and it wasn’t diagnosed until he was older (he is also seven this year). I too haven’t told his siblings the ‘diagnosis’ and I try not to use it at school/speaking to friends/relatives, since as soon as the words are mentioned adults start to put limitations on what they think a child can achieve. Children are different and just accept it. I hope Seb had a lovely birthday and I wish you all the best for the future!


    • What a lovely comment, thank you for taking the time to read the post and write your response. I agree. A diagnosis is useful in medical terms. But that’s it. It’s such a shame we have to label everything. Best wishes to you and your lovely family x

      Liked by 1 person

  4. Teresa Brierley says:

    What a love Family 🙂 I too have a granddaughter with Down Syndrome and she will be 7 this year . As you say , children don’t comment on a child’s condition , but I will tell you something that My Granddaughters elder sister who is 10 said to me one day ” Nanny , I just couldn’t imagine what my little sister would be like if she didn’t have Down Syndrome 🙂 That really puts it into perspective ! how lucky we are . I wish you and your family all the best in the world 🙂


  5. Lovely article on the BBC, thank you for sharing. My brother has Down Syndrome and over the years I’ve had many people over the years express their sympathy to our family because of his diagnosis. What I never fail to point out in response is that he is the happiest person I know and the sympathy (though well meaning and understandable to a point) is misplaced.

    I also felt a frisson of sadness, reflected in your observation of how disabled people were kept out of the way when our generation were young. My brother is innately canny and intelligent. He does not however have the skills to be able to live an independent life. The sadness comes from the knowledge that I see the potential in him, that was not tapped into because as you rightly point out, “they” were pidgeonholed, segregated and allowed to conform to the stereotypes that formed the prevailing view of “them”. I do wonder how different his life might be if he were allowed the same opportunities me and his sister we afforded.


    • Hi Sal, what a beautiful by bittersweet comment, thank you for taking the time to post it. I meant to articulate in the article how it’s not surprising that people of older generations think people with DS are the same, because they most probanly were. I also meant I add that a diagnosis is important from a medical point of view to be proactive in identifying needs and planning effective learning etc but a diagnosis comes with a label. I don’t know a single child who would feel sad for Seb or would patronise him. I know lots of adults who would though! Best wishes to your family


  6. Julie says:

    Hello. Love your article. All I see is a beautiful little boy having lots of fun surrounded by love from a family who believe in him.I wish you and your family many more happy years ahead. X


  7. What a fantastic positive article. It should be posted up in every antenatal clinic, given to every healthcare professional (I know that often we are the worst for making assumptions) and every teacher. You are so right that we as a society tend to lump ‘disabled kids’ and ‘disabled people’ into one amorphous group (much the same as we do with people with mental health disorders). How much better it would be for all of us if we started to see each individual person – child or adult – that we encountered as an individual human being with intrinsic value. Thank you for writing and sharing your lovely pictures with us.


    • Diana thank you so much for taking the time to write your lovely comment, it is much appreciated. It is easy to write when it is based on real feelings and experience. I would love for medical / health professionals to have had first hand experience of Down’s syndrome. The person that attempted to give us seb’s diagnosis wouldn’t even look us in the eyes and he skirted around the actual words!


  8. Sharon says:

    What a lovely blog! As a very proud mum of a 9 month old baby (who also happens to have DS), it’s wonderful to read about your family life. My son is the light of my life and brings so much joy to us every day. I hope Seb had a wonderful birthday !


  9. Hi! I’m from Brazil and have just found your blog. And I really have to say how sweet are your writtings and the pictures. I also have a little gourgeous two year old boy with Down Synrdrom. And I feel just like you. It was a huge surprise. Scaring and, I don’t even know how to say in English, because it’s so overwhelming, that I can only get close to explain in my own language (if I really can). But, that’s it. Your kid is gourgeous. And let’s go on! There’s a lot to learn. And I think just like you: it’s not so different from being a mother of typical kids. (I have a one year old girl too, my little Helena). It’s just a little more extreme, maybe… Lots of love! Ana.


    • What a beautiful comment, thank you Ana for taking the time to write. It made me a little emotional as I have a wonderful friend, also an Ana and also from Brazil! Her little boy is in my sons class at school and she has an aunt with Down’s syndrome. I also have a niece called Helena! Lovely to hear about your beautiful family and wish you lots of love and health and happiness xx


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