Bad day

Freddies not had a good week. Which has made caring for him so much harder.
We tried to go out for a family meal this evening. Before we even left the house i knew it would be a disaster. Freddies epilepsy seems to have effected him this week so hes not been a happy boy. He woke up from his nap & i couldn’t stop him from crying. But Evie was so looking forward to seeing everyone that we decided to go ahead with going out & hoped that Freddie improved.

When we got to the pub he was so irritable. He just screamed when sat in his pushchair & he couldn’t sit in one of the highchairs they provided as they didn’t offer him enough support. When sat on my lap he would rock back & forth & just sit & cry. I managed to eat a bit of food but it was so unenjoyable. I couldn’t relax & socialise with people. I just panicked that everone would frown upon me & think what a bad mum i was for the way Freddie was behaving. But i don’t know how i’m suppose to deal with him when i don’t understand him. I don’t know why hes crying. Possibly the epilepsy or maybe his reflux.
We decided to leave the meal early & we just came home & put Freddie to bed.

I hate that we can never go out & enjoy ourselves anymore. We rarely go out & when we do it’s so stressful that it seems pointless bothering. We may aswell just stay in the house all the time.

I’m so tired from it all & just want to curl up in bed & sleep. But even when Freddie sleeps he still needs me. I still need to do his nightfeed, meds & change his nappy before i think about sleeping. Sometimes just wish things were a bit easier.

Wedding Time

A few year ago before I had children I read an article about a lady who gave birth to a child with Downs Syndrome. She was unaware her child had problems & it was a total shock to her when she gave birth. I remember at the time thinking how awful it must be when on a day that’s meant to be one of the happiest in your life you find out your child isn’t what you expected and your whole life is turned upside down.  Little did I know that a few years down the line this would happen to me. But I never felt the way I expected too. I didn’t cry or panic. I just thought once we found out what syndrome Freddie had there would be all sorts of help & everything would be ok. Even when we were told horrible things like he had heart failure(although i’m still not sure why we were told this as it was totally untrue) i didn’t cry i just carried on with it. I assumed the doctors would make everything better & in a few weeks he would be ok. I was so very wrong.

This week me & my partner finally booked a date for our wedding!(WWWOOOOO!!!) When my partner proposed to me we decided we were going to get married abroad, but this was before Freddie was born & this is totally out of the question now. So we decided to have the wedding & the after party at a hotel so there will be somewhere for Freddie to sleep & to store all his equipment. I was so excited to go home & plan everything!  Freddie was going to be my page boy and Evie my flower girl. In my head it was perfect…until it dawned on me that Freddie’s care needs aren’t just going to disappear for that day. He will still need his 3 bottles of milk & range of meds tubing throughout the day & still need somebody with him to keep him safe. His reactions to things seem to be changing at the minute too(used to love having his hair washed but now makes me thrash around & very unhappy) so i’m not sure how he will deal with the loud music and change of routine. At some point during the day hes going to need a nap & as hes very against sleeping anywhere other than a cot he will need to go up to the hotel room to sleep but anybody who I would trust to look after him would be at the wedding so I have no-one to watch him. There’s still another 6 months until the wedding so i’m hoping maybe he will have outgrown his afternoon nap but hes still very reliant on them at the minute & has a good 2-3 hour nap most days.
The things that most people do at weddings like having a nice relaxing lie in & breakfast in bed the day after the marriage & a romantic honeymoon will be out the question. It’s just not do-able with a child like Freddie. I’m hoping during the wedding i can rely on close family & friends to help me out a bit with Freddie but his needs & behavior can be hard for people to understand and deal with so leaving him for too long would be unfair on both Freddie & whoever was caring for him. We are hoping to spent a few nights away with the children in tow after the wedding which might not be ideal but it’s the best we will get under the circumstances.

I really didn’t realise how much Freddie would effect my life. Everything seems like a challenge. Daily life is hard enough but when you add something like a wedding to the mix you realise how hard it really is. I want him to be running around at the wedding party having fun like a 19 month old should be not just sat their unaware of whats going on. Just a day off from all the caring and all the problems.
I just read that this weeks Special Saturday topic is on me time ! Not sure i remember what that means. I do have time in the evenings & escape the house without Freddie now & again but even that isn’t really me time. I struggle to get Freddie out of my head. A relaxing bath turns into thinking about Freddie time….a meal out with the partner turns into discussions about Freddie….an evening sat down turns into me filling out forms for Freddie, or prepping night feeds and meds or doing housework that couldn’t be done while Freddie was awake.  Even when I lay in bed i don’t sleep as Freddie floats through my head. I would love to just have an hour in the day where my head is clear & I felt relaxed. I’m really hoping the wedding goes to plan & things aren’t as tough i expect but i have no idea what the next 6 months will bring with Freddie so we shall see.