S. is a school girl for last three months so time for update 🙂
We are both used to new routine.
1st wake up call at 7:30 and “Mum, 5 more minutes….” 😉
2nd at 7:40, and then catheterization, dressing in uniform, breakfast, meds and run for a bus or a long walk to school, to make it for 9.
Then I’m back in school for next catheterization before 12 and to collect S. at 1:30
Back at home for lunch, homework and another catheter.
Between enema and bladder washout and dinner, catheter, meds and bed time she has 1.5 hours (2 if we stretch) for playing, for fun, for being a KID.
Not much. So I’m doing my best to squeeze some play dates into it, so she doesn’t feel left behind. So S. wont feel different than any other child. She isn’t. That’s what we are keep telling her, since she was toddler.
But its starting to hit me that its going to be a new challenge.
I’m not saying its not possible, or its an illusion because she has a disability. She has, but still SHE IS A GREAT LITTLE GIRL WHO WANTS TO BE LIKE ANY OTHER KIDS.
With new school routine and new friends from school there is a new- much busier – social life for her.
Recently we had a situation where I had to decide what’s best and I feel like I let S. down. Still not sure what was the best way to deal with it.
S. got an invite to birthday party. She was included in a group of 10, from class of 30. Very flattering. They were going to be dropped off to cinema and after movie have pizza and cake. It’s miles away from us, and to get her I would have to travel for over an hour – each way. So I couldn’t go with her.
She would get a lift in and back but it’s way too many hours without catheterization, and even if I would do a catheter just before she left school, still no guarantee she would stay dry till she came home at 5-6. To be realistic, no way she would. And there was no one to help her change the nappy. Never mind the medication she need to take at 3pm. As I said before, I don’t want tell people about her condition. I don’t feel like there is a need for it. First of all it’s not my call. It’s S.’s condition and it’s her who struggles with it. I’m just here to support her In this journey. So I decided leave it to her, when she’s bit older, to decide if she wants other kids know about it or not. Obviously if I would tell now, it’s gone. It’s out. And Id like to keep it this way- no need to inform others about it.
I wrote about it not long ago and I truly believe its up to S. now to decide who she wants to share her story with.
In S. class she has 5 other girls she knows since she was 2 years old and I’m friends with their mums. They know our history and what special care is involved. I’m OK with that cos they are supportive (you know who you are, THANK YOU!) They are our friends. S. feels safe with them and I know they won’t make a big deal about it.
So I was thought long and hard if I should let S. go or not. Decided yes, but then realised there is no way she would stay dry all the time while she’s out with other girls, and she will get embarrassed if she has to walk in a wet nappy or she has to ask stranger to help her (most likely wouldn’t happen as she is super shy). Even though S. understands I won’t be there to help her with nappy,she got very upset she can’t go. So I txt mum of the birthday girl that S.can’t go. Next day one of my friends said she can actually pop into that place and she can collect S. with her daughter.
I knew S. really wanted to go so I put my head down, hide my pride in my pocket and asked birthday girl mum if S. can go. I told her that the reason she couldn’t go is that she need to take medication and I didn’t want to put pressure on this mum. But now knowing my friend is going to join them, and look after S., as S. knows her, I can let S. go. Got a short reply, that I should have said/explained before and that she is fully first aid trained with “!!!” and the spot it taken. Fair enough. I said : “That’s OK. I understand. That’s fine. Thank you.” I do realise that it looked strange- first said no, then yes…confuse and change plans.
BUT what upset me, was the second later this mum removed me from the WhatsApp birthday group.
It felt like a slap.
I don’t know, maybe I’m over thinking this whole situation. But in that moment I was really upset, so upset I was actually crying. It felt like by removing me from this silly chat group, S. was excluded from some part of social life. Longer I’m thinking of it, I realised it was a shock, because it’s a first time I had to deal with the situation like that, and I’m sure there will be plenty of them ahead of us. Since S. was born we try treating her as any other kid. As her disability is just an extra. Other than that she’s amazing lil girl. But this situation proved, there is some restrictions and I can’t dismiss it any longer. I always juggle S.routine with all the stuff she needs to have done to stay socially clean, it’s big logistics, just so she can have some fun. So she have time to be a kid.
It was the first time I said to someone outside of our “trusted circle” that S. cant attend the birthday party as she needs to take medications during the day and I wont be there to help her. I didn’t feel like telling anything more. And after what happened afterwards I’m glad I didn’t say anything else.
Few days later when I was telling friend of mine about this, she asked me- why don’t you just tell other parents what’s happening? Wouldn’t that be easier? Easier for who? Why would I wanna share such an intimate detail of my little girl with strangers (because I don’t know and wont know well all of the 30 kids parents from S. class)?
And most important – why should I?
Its not my condition, its not me who have to live with this. I’m here only to support my daughter. Its her challenge. Its her who will carry on and will have to deal with the outcome of mistakes I might make now. Right now shes 5 and she doesn’t exactly understand why she is like this and whats involved. But she will be in this school for next 8 years and when shes bigger I want her to decide if she wants to be open about it or keep it to herself. If I tell now- it will be out there- her choice is gone. And I truly believe its up to her. To S.
People I trust and I shared our with story, I’m sure of. I know they are supporting us. But there is different people out there. Not everyone is understanding and open minded.I do have faith in people, I just don’t think I have the right to ….Make this call right now. I feel like its a game changing call and I’m not able to make it.