I walk through the doors and head straight to the baby aisle.
It has been my first go to aisle now for the past number of years. I like to go there first because sometimes I find it the most difficult place to be.
I scan the shelves and pick a few soft toys up, mostly bath toys and give them a squeeze.
I check the tags to ensure that when these are placed in the mouth that they will do no harm. I scrutinise the toy ensuring there is no damage done to it before adding it to my trolley.
I don’t stay long in this aisle. I get very few of these toys then I move on to the musical books.
I stand here for awhile remembering what he once loved and wondering if he would recognise it now; this part of my shopping hurts me so I often leave that aisle and decide I will shop online instead.
Tears often fill my eyes when I am making my list for my boys and checking it twice.
Two of my three boys are easy to buy for – they tell me what they would like or they express an interest in a certain TV programme/game/character etc which helps me hugely with my list.
But when it comes to my eldest I am often left wondering what he would like.
I decided to change this thought to want he needs and perhaps might recognise. I find that way I don’t get caught up on ‘what used to be’, as much.
But, I am human and can wallow just like everyone else.
This wasn’t always the way for me and for him.
Christmas used to be a time when he would make his own list and hand it to me almost daily.
He’d express over and over again what he would like from Santa and I would get him every single thing on that ridiculous list.
I spoiled him.
I remember when they told me how Hunter Syndrome would change him over time, how it would take everything from him bit by bit. “He may make it to his teen years but by then his abilities will be no more than a six month old baby abilities”
I didn’t want to believe them, but in case they were right , I decided I would spoil my boy and give him everything he could need or want (within financial reason, of course).
For many years I lived in denial but was always noting the abilities he was losing, I finally stopped comparing last Christmas to this Christmas and stopped watching the previous years videos.
It was easier for me.
I get messages from family and friends more often now asking what Ethan would like for Christmas or birthdays and often I don’t have an answer.
I simply don’t know.
But what I do know is what Ethan needs for Christmas or birthdays, so I tell them.
I have to say I have a great family and kind friends who do ask what Ethan needs or if there is something they can give a few bob to that we are saving for. I appreciate that a lot.
It is expensive having a child with additional needs.
Families like mine don’t like to say it, but it is expensive.
There is always a piece of equipment that Ethan would benefit from that we can’t afford or that we’ve to wait months, sometimes years to get through the HSE.
Time and Hunter Syndrome don’t mix well.
Then there’s little things like neck pillows or wheelchair supports , blankets etc.
My point is, if there is someone in your life who has a child like Ethan, simply ask them what their child may need.
It doesn’t have to be a big expensive thing but it’s better to get something that is needed and will be used rather than something that sits gathering dust and reminds parents like me of the child that used to be.