I’ll Stand By You – a blog on Sibling Friday for #rarechromoweek

This week the Unique community has been raising awareness around rare chromosome disorders and today is a particularly special day. On Sibling Friday, we are celebrating and raising awareness of the very special role that siblings play in the lives of those affected by rare chromosome disorders.

Due to her unique genetic condition and my quest to raise awareness around rare chromosome disorders, Marigold gets a lot of airtime. That’s both virtually and in person. At age 2 she has achieved internet fame (at least, within my immediate circle of friends and the Unique community). She has been presented on at a genetics conference. When I see people I haven’t seen for a while, one of the first questions is always around “How Marigold is getting on?” When our amazing nanny Jackie comes on a Monday morning, she will first and foremost get a full digest of Marigold’s weekend.

But there is of course another little person with needs in the family. And whilst it would certainly not be true to say these get overlooked, I do often feel like Marigold may unintentionally steal the limelight from my equally beautiful, gentle, hilarious little 5 year old boy, Harrison.

One year ago, I wrote a blog called “He Ain’t Heavy He’s My Brother.” This was about the wonderfully strong bond I saw developing between Marigold and her big brother, celebrating his devotion and kindness when it came to his little sister, even though she takes up so much of our time and attention.

One year later, the strength of their sibling bond continues to move me.

Harrison is many things to Marigold.

He is her best friend and playmate. When it’s time to go and pick him up from school, she literally shakes with excitement. This goes both ways of course. Harrison will often tell me in a confidential manner “Marigold is my best friend ever.” Watching them splash around and laugh together in the bath is one of the memories I will probably sit and cry about when I am an old woman, it is so painfully sweet.

He is her personal entertainer. Nobody can make Marigold laugh like Harrison. When she takes a tumble and hurts herself (which is quite often as she is in that wobbly trying to walk phase), he will do what he can to make her laugh. This may involve significant toilet humour which I believe is all the rage in Reception class at the moment, but still, it does the trick.

He is her protector and defender. He will not have a bad word spoken about his sister. If she is being difficult about something (at the moment I am not particularly enjoying the “planking” when I try and put her in her pushchair for instance) and I tell her to “stop it” I will generally get told “Don’t talk to her like that!” When he found out recently she was going to start a nursery, he got very upset at the prospect of her being left alone with people he did not know. I have to take him there later on today to meet them and ensure it has his seal of approval.

Harrison is her therapist. He has unquestioningly accepted that therapy is something we do with Marigold to help her and loves to help with physio and play therapy. Speech and language is his favourite thing and he is learning to sign at the moment. In line with that, he is also her interpreter. Now he is the one who tells me what she needs, he is so finely tuned in to her.

He is her big brother and for him, Marigold is just Marigold, his little sister. He never notices what she can’t do and only ever speaks about “when” she will do things.

Recently, Harrison’s school was closed for the day and I had to take him to one of Marigold’s groups: a lovely group for children with a variety of additional needs, where I have met some amazing children and their parents. Harrison couldn’t wait to meet “Marigold’s friends” and kept asking me what they were like.

There was, deep inside me, a small worry. He is a five year old and can be, as all five year olds, outspoken. How would he react to children who he might perceive as “different?”

He came to the group, he played with everyone, he had a fantastic time and it wad not even a consideration. My beautiful, gentle, accepting little son.

Yes, I guess I have a lot to learn from Harrison too.

Being the sibling of a brother or a sister with additional needs is not an easy ride. Harrison has had days out cancelled; holidays postponed on the day of travel (particular cruel); holidays dominated by illness and driving round rural France trying to find a pharmacy; time that should be spent building Lego creations spent doing physio or similar….dividing your time between two children is so hard anyway, but build in all the extra things we need to do with Marigold and that creates another layer.

Yet he remains all those things. He is devoted to her and her to him.

So this is a message for my beautiful boy on Sibling Friday in the event that years from now, if the internet is still around, he might stumble on this blog:

Harrison, you are the best big brother Marigold could ever hope for. We could not do this journey without your acceptance, your patience, your kindness, your optimism and your devotion. These are real super hero powers. You are one awesome little man and we are so so proud of you and all you are growing up to be.

 Celebrating all the other awesome little people out there today for Sibling Friday #rarechromoweek.



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