Birthday parties and the hidden illness

Children’s birthday parties are something I came to dread when Jake started getting invitations. After going to some lovely toddlers groups and making firm mummy friends who knew and understood Jakes condition, they accepted both Jake and I with open arms. This may seem quite the silliest of notions, but with the stares and obvious differences between our normal and others, it was something that I became very conscious of. My over thinking treadmill of a mind panicked about the following

1. What toilet and changing facilities will be there? Will there be disabled toilets with a changing table in case I have a stoma bag explosion and need to re dress and changed both stoma and gastrostomy?!

2. Will there be food offered? If it is left out will Jake suddenly want to eat and grab gluten laden food? (Being Coeliac)

3. If it’s a venue that is providing cooked food will there be options for a Coeliac/fussy eater that doesn’t eat. I don’t want my handsome boy left out and by some miracle he may find other children eating encourages him to give it a try.

4. Will there be activity that is rough and tumble that could result in Jakes bag coming away or his gastrostomy tubes being knocked?

5. If there are party bags, will there be gluten laden which I need to get to and remove before Jake gets to them?

The standard worries that I’d imagine other mums have like will the venue be safe and secure, what present do I buy and does it fit around nap time and in my case gastrostomy feeds, also run through my mind. Communication is key and if a mum has taken the time to ask myself and boy to attend a birthday celebration then of course we will make every effort to go. It is a special thing knowing that another mum in her chaotic life has thought to include us. So how do you over come such worries as mentioned above?

All venues have toilet facilities as we all know, but disabled and changing facilities together in the same room is not common, and quite frankly shocking when not! Not only do we have to lug around enough equipment and supplies to warrant a pack horse, but in the event of having to change dressings and stoma bags, I will not leave my child to stand or lie on a hard dirty floor. This is the game changer and in some events has resulted me in doing these changes in my car where I know it’s clean (as can be!). My advice is to ring ahead, explain the situation and most places will try their best to accommodate you.

Having a Coeliac child means a battlefield of problems coming your way at such an event. Again, explain to the organiser the situation and asking for other options from the venue shouldn’t be a problem. Failing that, I have provided food to be brought out at the same time. Lovely mummies usually offer to supplement this but with it costing more in most cases I insist on paying myself. Again, Jake is not likely to eat but he will not be left out and we have been pretty lucky with more and more venues recognising such allergies and catering for this. Make sure you explain to the venue that being Coeliac is a serious allergy and cross contamination of gluten is not acceptable. For example a fryer used for chips may be used for chicken nuggets meaning even if the chips don’t include gluten, they are now contaminated by the wheat coated chicken nuggets.

Rough and tumble especially in venues like soft play is unavoidable but this over protective, anxious mum sticks to her toddler like glue. I am his shadow, and if another toddler was to bash into him and hurt him by pressing on his tubes or stoma bag then I am there to deflect the situation. I imagine I would be like Wonder Woman, gracefully intercepting Jake from the altercation and setting him back down out of harms way! In reality, I would be over the top in moving him away from a simple tap on the shoulder, whilst toppling over a near by child and causing an injury myself!

Despite this being our best practice till recently, my toddlers growing confidence and yearning to socialise with other children has meant he is now more likely to run away from this crazy protective mummy, and be more independent. Being 2 1/2 years old, being established in nursery 2 mornings a week, and being hospital free for several months, my little man is less feeling the need to have mummy protect him. As happy and proud as I am that he has come to this himself, a part of me is sad that I am not needed so much, my little shadow is growing up, getting stronger and moving further away. Last weekend at a soft play party he ran into the play area without looking back, and I accepted that he no longer needed me to be his shadow but to watch closely and be ready to step in if and when needed. A friend recognised that I was struggling not to be Jakes shadow, but reinforced he was having a great time and it was good for me to let go a little. The birthday girls mum has become a great friend of mine and the party bag surpassed all expectations. This silly emotional mum got quite teary eyed to see the thought that had gone towards making my little man happy. The party went swimmingly, boy does this woman know how to throw a kids party! We both had the best time, stoma bag in tack and gastrostomy tubes still in place.

I have never organised a birthday party for Jake apart from a family tea party. With hospital stays so close each year, I felt it was too much. This birthday coming I am hopeful we can throw the best party ever with family, friends and make it a day to remember. Yes they probably won’t remember it at this age, but they remember the feelings and the connections made, and seeing the smiles on their faces is worth it ten times over. Last year Jakes birthday was spent in hospital and the lovely nurses gave him a present and made him a card. It made it special that they acknowledged such a special day and I will keep it forever.

I hope you found this useful and if you are having a party soon, spare a moment to think about the little ones who are living with such hidden illnesses, they made need a little helping hand.

Thank you for reading. Rachel x

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