National siblings day 2023 - A letter to Noah

To our precious Noah,

When you were little and we knew you were going to have a sibling, we never expected life to look like this.

When you were around six and a half years old, we were on holiday and you were asking questions about Micah. We told you that your brother's brain worked a bit differently to ours and that he had a learning disability called Fragile X Syndrome. We never expected life to look like this.

When you started to experience life with your brothers we know that you, too, never expected life to look like this.

Noah, this isn't what any of us expected life to look like and we are sorry that you have already had to deal with something very different and unexpected at such a young age. We are sorry for how living this fragile life makes things that little bit harder for you.

We know things are that little bit harder

• We know that some of the conversations we have about your brothers can be hard.
  
  Will Asher ever talk?
  Will Micah and Asher always have Fragile X?
  Will Micah and Asher always live with you?
  Will Micah ever be able to write?
  Will Asher have epilepsy?
  Will Micah ever get a job?

• We know the worries and the extra responsibility you feel can be hard.
  
  "What if I wake up and you and Daddy aren't here, What do I do? How do I look after Micah and Asher? What if I do something wrong?" 
  
  "I'm worried about Micah still hitting me when he is bigger and stronger." 

• We know having so many questions and so many unknowns for now and for the future is hard.
• We know it's hard seeing seizures.
• We know it's hard because your brothers don't play in the same way as you.
• We know it's hard because Mummy and Daddy are busy helping Micah and Asher.
• We know it's hard that you and your brothers won't end up going to the same school as each other.
• We know it's hard when your brothers hit you and hurt you.
• We know it's hard when we have to tone down certain events like birthdays and Christmas.
• We know it's hard when we have to make certain exceptions which suit your brothers more.
• We know it's hard when the noise your brothers make seems to be accepted and your noise is discouraged.
• We know it's hard when you have to miss out on doing things or we have to really think things through and consider whether things can work.
• We know it's hard when doing an activity with your brothers can actually be quite difficult and stressful.
• We know it's hard when the conversations you have with your brothers are very limited and one-sided/different.
• We know it's hard having a brother who can't talk.
• We know it's hard that you can't play with your brothers on the Xbox.

Noah, sweetheart. We are sorry that things are different to what you expected them to be when it came to having brothers. We truly understand that life looks different for you compared to others and that having brothers with a disability effects all aspects of your life. We completely acknowledge your struggles and need you to know that you are not on your own. Daddy and I are right here with you, dealing with our struggles, needing to accept the unexpected, working through our worries, having questions but not many answers and facing the unknown. We are right here with you learning how to live this fragile life and basically... making it up as we go along!

National siblings day 2023 

Noah Matthew Corry, we acknowledge your struggles but we also want to recognise the brother you are and all you do for Micah and Asher and celebrate you and the relationship that you have with them. Today on April 10th on a day where siblings are celebrated around the world, this seemed like a really appropriate time to do this personally and publicly.

Noah, we celebrate you for the way you:

• Make your brothers laugh
• See the positives in your brothers
• Understand the complexities of life with disabilities
• Try to show real empathy to others in what they are going through
• Accept people for who they are
• Help your brothers with their socks, shoes, coats, sweet packets, drinks bottles etc.
• Show real maturity and wisdom in the midst of hard conversations
• Are so caring and attentive when Micah has his seizures
• Embrace and/or tolerate Saturday sleepovers to bring joy to your brothers
• Encourage your brothers to sit with you on a sofa with Xbox controllers knowing full well that they cant play, yet making them feel like they can
• Show forgiveness daily to Mummy and Daddy when we get things wrong
• Show forgiveness on a regular basis to your brothers when their behaviour can be challenging
• Explain to others why and when your brothers might struggle with something
• Are able to somehow find something that you can all join in with and enjoy together
• At the age of 11 you recognise that FXS is not something simply about your brothers, but that it is part of what makes them who they are. And although FXS has a negative impact on their lives, without it, it could have a negative impact on their personalities.
  
  

 

 

Noah, sweetheart.

You are fab! You are having such a positive impact on your brothers and you have such a valuable role to play in their lives.

Although your relationship with them doesn't look how you expected it to, looking on, it is unique and special. Full of love, care, concern, joy and laughter... much laughter.

Thank you for who you are and thank you for the brother you are being to Micah and Asher.

We love you very much.

Mummy and Daddy 

x x x x x x x x x x x