Trisomy 21

I had done it so many times before….. Let’s all go to the hospital to see another new baby. 

My mum had just given birth to her seventh child ( crazy hey- She has never been sectioned)

Off I trotted with my siblings in tow to see the new arrival. 

When I arrived I peered into the small cot in the corner of the room. Mum wearily smiled as we all came in. There she was… my new sister….except she didn’t look like my other sisters. In fact I just remember thinking ‘she looks like the boy I went to school with and he was special needs’ 

I didn’t know the word for what it was, but I knew she was different. The atmosphere in the room wasn’t like the other joyous times, the mood sombre. It was awkward in fact and mum looked vacant.

I didn’t understand what was going on but I knew something was up! 

Time passed and I learnt the word for it. My sister had been born with Down’s syndrome. At 13, I didn’t have the insight or emotional intelligence to care about anyone else but me. At 13 you are selfish and my thoughts were how this would impact ME. 

All I kept thinking was ‘why me?’ ‘Why our family?’, ‘What if people laugh at her?’ ‘What if my friends think they can catch it?’ ‘Oh my gosh what will school friends say’ ‘Will she be able to talk, walk, feed properly.’

I remember feeling sad and I didn’t know why!

Mum and Dad  named our new sister Lydia… She was small and looked distinctively different but it was hard to pin point what was different! 

Once the initial shock passed for all of us and following some very unhelpful professionals who suggested adoption as a option pretty much straight after her diagnosis, one doctor even made a terrible comment about my new sister.

Next came sadness, we were told Lydia had a hole in her heart. She was very poorly and would need a operation within the next few months. We were aware that this new little sister may not come home with us at all. 

My dad; who had a strong faith felt he wanted to have Lydia baptised should the unthinkable happen. It’s the only time I have ever saw my dad cry. 

We have a photo of us around her cot with the local priest, in the intensive care unit- Lydia was weeks old. My Mum  looked like death, my Dad looked scared and the rest of us look bewildered. Looking back at the picture now it’s a very sad yet poignant snapshot. It epitomised what our family was about…strength in the face of adversity. That Picture alone sums us up! 

We didnt know what the future would hold for our Lydia, we didnt even know if she would survive but what we did no, an unspoken trust between us- was that no matter what, we were her family and we were not going to give up on her, especially when she had so much fight in her. 

Lydia had her open heart surgery and after a few weeks of sedation- she was getting stronger and things were looking up. We learnt how to tube feed her and I remember reading up about features typical of someone with Downs,  I learnt the biggest lesson to date- it does not matter what life throws at you, you keep going and things will also come good in the end. When you struggle you find solace in each other. That is just what we did!! 

Lydia was sent to our family because we could handle it, because we could give her the guidance, love and acceptance others aren’t blessed with. Lydia was our little angel and she had 6 siblings who were always going to have her back. 

Once the medical stuff was over and Lydia came home…. the real fun began- as Lydia grew she blessed our friends and family in ways you couldn’t imagine. I will continue to blog about her, in order to give everyone a little piece of our Lydia.

Every family should have a Lydia- having Down Syndrome is nothing to fear, don’t pity her, dont cock your head to one side and say ‘aww poor thing’. There is nothing poor about Lydia’s life, she lives life to the max every day, she is honest,  raw and hilariously funny. 

Lydia single handily is educating us all, so be sure to take note and learn!!

She also wears a decent bra and proper knickers! 

Lydia the legend

One comment

  1. Since the day I met Lydia I have felt love. I love how funny she is , I love how I get the biggest hugs everytime I see her.I love Lydia she is special young lady.
    I also wear a decent bra and proper knickers!

    Liked by 1 person

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