So half term has happened! We are counting down the hours until the magically sight of the school gates. I LOVE spending so much time with the kids, I love holidays however I don’t like holidays at the same time.
We decided this holiday to make the most of our annual passes and play dates. As MO is so routine we always made sure lunch was going to be at home and if we had an activity in the morning we would relax at home in the afternoon and vice versa. Then life happened!
Friday before half term MO’s school rang us, he wasn’t well, when we got him home all he wanted to do was sleep and lounge on the sofa. This is very un like MO usually he is all over the sofa. We decided to have a lazy afternoon and evening of relaxing. I am so thankful I hadn’t mentioned he was going on a playdate that afternoon, thankfully modern day means a swift facebook message to say MO has been sent home ill and MO is none the wiser that he should be at his friends house.
Sunday was horrible, we always have a roast Sunday lunch time at my mum and dads. Well the Sunday was different we had a lunch at church… MO thankfully dealt with this change very well, his ticks got worse however over all the actual lunch was well. I was so happy, even happier was the fact that BBG had sat in a high chair for the first time ever! She had to come out as got exhausted but she had done it, she had sat in a chair, slightly wonky and floppy but she did it 🙂 We got home and BOOM I was ill. My joints hurt, my head felt like it was going to explode, a wave of tiredness swept over me. I could not do anything but get into bed. Dad took the kids out to my mum and dads to try and get some routine into MO and so that Dad had a little help (not that he needed it but we were worried about MO).
Monday morning should have been full of laughter as the kids played with their friends on a playdate, I was really looking forward to it until the Monday morning waking up like I had ploughed into a brick wall at 50mph, however upon looking at my phone I rolled back into bed, the playdate was cancelled as the other house had the dreaded sick bug. Dad was very good, BBG stayed up with me so that I only had to walk across the bedroom to nurse her and Dad had the big ones downstairs. I have no idea what they got up to, all I know was that I slept, I slept and slept and slept. I felt awful, I tried to get out of bed for the bed time routine but I couldn’t, I felt like a failure, I had failed on giving my boy the one routine he needs, the one routine that is clockwork and I couldn’t do it. What mum can’t get out of bed to give their boy the only kiss and cuddle he gives in the day… I failed him.
Tuesday we were going to venture to the zoo, well I was still a zombie and MO was starting to bounce off the walls and not cope with half term and the routine change. We decided Dad could not take him to the zoo it was too risky, when he is like this he would have run away, punched the glass of the containers, infact anything you can think of he would have done. Mixed with the fact the zoo would be crowded so he would be anxious as anything anyway we decided it was a 2 parent job. Dad took the big kids to the local small nature reserve. MO can deal with nature as said in a previous post it completely calms him down and gets him completely relaxed, no matter what is happening a good old bug hunt will calm him down straight away. Again I missed the bed time routine and again I felt like a failure. I was also so thankful for the first time that BBG is so content, she did venture onto her playmat a couple of times during the day, but where she still sleeps 75% of the day it thankfully didn’t impact on her too much. I used all my energy up doing her daily physio, although she was a sleep I was not going to let her get behind on her exercise. I wouldn’t fail her like I had MO for the past 2 nights. don’t get me wrong I failed my other kiddies, I failed at the fact I hadn’t snuggled up with them at all, I hadn’t seen SB turn the washing machine on because he was helping me. I hadn’t seen BG snuggled on her bed head buried deep in her book, it hurts but it was 2 days, and thankfully they aren’t routine kiddies and also they just wanted me better so that they could see me be me again. Their empathy when it comes to sickness shines through, while MO just couldn’t handle me being in bed and I feel sorry that I didn’t have the strength to make his routine the same.
Wednesday I made it downstairs! Dad however was now feeling ill! this was not the aquarium visit we had planned. I still wasn’t well enough to venture outside and Dad didn’t have the strength to deal with all the big kids down the aquarium, MO loves the fish, however he generally needs an adult with him just 121 (well, usually its MO and BBG as she just sleeps in her pram) just looking and talking about the fish, it is the one place crowds do not worry him, however do not be fooled, he has his routine and you can not steer him out of said routine, whereas SB and BG don’t want to see the boring fish they want to see the SHARKS!! They need the other parent to run after them and try to slow them down as MO slowly goes around. Also the local aquarium had just reopened as they have penguins and meerkats now… we weren’t sure how this change would affect MO and the risk of him having a meltdown was too high. I know there are single mums and dads out there who deal with 4 kids no problem but we have a team and it works for us. Maybe if I was 100% I would have tried but we just didn’t have the energy to face being beaten up by the 5 year old who can’t understand why there are now penguins there, being hit because his siblings want to run ahead and we have to stay with them not poodle along because of his routine. Sadly we didn’t have the energy to do this. I did bed time routine and I have MO the biggest hug and kiss to make up for the past few nights, he did not like this, he did not realise why I was giving him a bigger kiss and cuddle then usual, he was not happy. SB and BG were excited that mummy was finally tucking them in and SB was happy that I was doing silly voices reading his new book, BG was just happy to finally cuddle me curled up in a ball watching some tv.
Thursday I was BETTER!! Dad was not… I took the kids to the woods with my brother, his wife and 4 kids. It was so lovely to see the kids run around and play together. We came home and had a movie afternoon, popcorn and all. The kids loved it and it meant I could snuggle the kids (well the ones that wanted it!)
Friday Dad was left alone with BBG, SB and MO while I went to London to a Beauty and the Beast themed afternoon tea with BG. She LOVED it, she loved the magic of it all, the way the cakes were shaped like the characters, that the jelly had rose petals in to represent the rose in the movie, she LOVED the tea, but most of all she loved just spending time with me alone, she wouldn’t stop smiling and chatting away, I just loved hearing her little voice, her excitement of the train going fast, her cautiousness of the crowds in London, the politeness as she said thank you to the waiter, the awe she had at the fact the restaurant didn’t have hand dryers or paper towels you dried your hands with flannels. I don’t get enough 121 time with any of the kids really so days like these are just amazing. As she is half chinese we were going to stop off in China town on the way home however I got a text to say BBG was not feeding so we went straight home. To be honest I think this was the right thing to do as BG fell asleep by the 2nd train station on the way home.
Since Friday BG’s feeding has not been good. She isn’t strong on a normal day, she will hold her head up for a few minutes then won’t lift it for the rest of the day, she won’t play with toys unless you physically give her the toy, even then her grip is hit or miss, most of the time miss. On her bad days she can’t feed well at all. I rushed home as quickly as I could. I picked her up and I nursed her. She only had 3 feeds in 24 hours I was worried however she does this on her bad days. Saturday she did the same, usually her feeds are very strong in the morning and by the afternoon she barely has anything so to wake up to her not wanting to latch on was out of the ordinary, once she finally latched on she just would not feed. She finally had a feed around lunch time not a full feed but a feed. Saturday she was so floppy, she just lay in our arms, she couldn’t lift her head, she couldn’t move her arms she was just moving her eyes, her usual beaming smile had vanished she was the worst I had seen her. It didn’t help that this week we have had the consultant report through to advise that he is sending her to Great Ormund Street and their neurology department (for her movement) and speech and language department (this is for her swallowing ability). It just played on my mind. Thankfully by Saturday night she was back to feeding in fact it was non stop 🙂
Today she is still not good, she is still not really strong at all. She did grasp a toy from my mum however dropped it again pretty much straight away, she has been asleep most of the day and her arms aren’t as strong as usual. It is so sad to see her like this, it is sad as we have been told we don’t know what is causing the hypotonia that it could be a condition that gets worse and I just panicked. I panicked that this is it, this is the downward spiral. I panicked about if this is what she has in store for the rest of her life, that her bad days are extremely bad. I just don’t know. I know alot of people will read this and think that I am over thinking that I am being stupid but when you don’t know what is causing it and some of the conditions are not nice you can’t help but think about it. She has now been bad for 3 days. I hope tomorrow is a good day however I don’t know. The health visitor is coming tomorrow for her measurements and reassurance but no matter how many health people say its ok we will get through I can’t help but think “can I?”. I hate the not knowing, I hate seeing my daughter so weak. I am trying to be positive about BBG, I am trying to think nothing of it, that she will get strong, we are doing everything they tell us to, then the big depression and anxiety part of me starts with the guilt, the feeling of failure that I have failed my daughter. I am nervous that this bad day stretch will last even longer and that it is somehow my fault. I guess that is every parents feeling when their child needs extra help but I just can’t get over the fact I failed as a mother, I failed to develop my daughters muscles and the fact that no one can tell me why just makes me think it even more as I have no condition to say no it wasn’t you it was because of this.
On a positive note though, BBG turned 6 months old and we all made it to the end of the holidays in one piece.
Routine tomorrow and I can not wait!