Behind the smile

It's been an in joke with my family over the years about how smiley, happy and bubbly I am as a person compared to how I was when I was a baby.

A baby who was basically a right grump, fairly miserable and hard to impress. Sitting in the pushchair for all to see and whenever anyone was to pass by and comment they would barely get a reaction from me, especially not any cute smiles or giggles. Mum and Dad would say throughout my adult years that it was like I was making up for lost time. :) 

Over the last few years I've come across this quote a number of times. I don't know who its from but it definitely resonates with me:

'Just because someone carries it well doesn't mean it's not heavy'.

This is a picture of me... smiley, happy and bubbly. This same picture is also me not long after finding out that Micah had Fragile X Syndrome.

This is me again... smiley, happy and bubbly (even whilst assembling kitchen units). This is also me the day after finding out that Asher also had Fragile X Syndrome.

Carrying it well

Since Micah and Asher have been diagnosed with Fragile X, people have said many things but a few in particular come to my mind...

'You and Matt seem like you have it altogether'
'You're amazing - I don't know how you do it!'
'You're doing so well'
'You carry it all so well'
'I guess with two you know what your doing and what you're dealing with'

I think it's really important for people to know that just because someone (or in this case, me) seems to carry it well doesn't mean it's not heavy.

The heaviness

Over the past two or three weeks, when I might have smiled, laughed, sent you a message, replied to a message or spoken to you in person, these were some of my thoughts and some of the feelings that I felt. This is what was behind the smile...

• The worry about seizures when they come out of nowhere again at home and at school.
• Sadness over your child who doesn't speak.
• Hearing other preschool children talking so clearly to their mums and dads when yours can't talk to you.
• Sadness, concern and frustration over your children who don't play in the conventional way.
• Acknowledging and accepting that another of your children also needs an EHCP.
• Being encouraged to apply and fill out carers forms and for DLA forms.
• Making appointments and having conversations about different school options for Asher which might not be mainstream.
• Sadness over a child who has no concept of time.
• Heartbreak over the form which shows your child is not 'secure' on many age appropriate milestones.
• Attending an open evening for a mainstream secondary school for Noah and knowing that this is incredibly unlikely for the other boys.
• Packing and sending Noah of on his residential trip knowing that this is incredibly unlikely for the other boys.
• Birthdays and Christmas coming up and the struggle of what presents to get and what events you can and can't go to because of what your children can and can't cope with.
• Watching your child unable to answer some really simple questions that people ask him.
• Seeing your children staying in younger groups at church because there is no way they would be able to interact or engage in their actual age group.
• Signing Noah up for after-school clubs or football matches and not really knowing if the other boys will a) be able to do clubs or b) if the provision/support is even there to enable them to do clubs.
• Learning more signs to teach your child so that he can communicate to you without words.

I don't write this intending it to be read as 'woe is me'.

Instead, I write this as a reminder to all of us that there might be more going on behind the smiles, deep belly laughs, 'I'm good thanks', funny gifs and happy photos etc. Behind the carrying it well or trying to carry it well, the weight can be heavy and the heartbreak still real.