This week has felt non stop. I am exhausted and just want to crawl into bed and sleep for a week. Instead Dad has gone on a photo shoot and I have the kiddies bed time routine to do alone tonight! I am actually freaking out about this and feeling useless as a mum about the fact a simple bed time routine alone can send me into nervous sweat.
Anyway, this week has been full of nothing appointments slapped right bang in the middle of the day so you can’t really do anything, on top of that we are having work done to the house which seems to be taking forever! It was enough to make me not happy straight away.
We did get our GOSH discharge summary and a call to advise to take the discharge summary to our local hospital when BBG has a bad day for them to do tests. We got this Tuesday and Today she was having a very floppy day, one where I felt she would be floppy for awhile, after a phone call to hospital and realising both BBGs London and Southend consultant weren’t in today we decided to wait to her next floppy day. Also with it being Saturday I am too exhausted to muck up MOs routine.
They want to test her on a floppy day, as they still aren’t sure what is wrong, it seems like she is ticking 4 out of 5 boxes for several conditions yet when they do the final test to say yes its this it comes back negative. All her tests are showing something but nothing at the same time. The discharge report mentioned some symptoms we had never noted but knew she had, so then this whole self doubt about if I didn’t even notice that how good a mum am I, then I realise I am not a dr I am looking at the fact she goes up and down feed wise and strength wise, not the fact her veins on her head are getting more and more pronounced or that her forehead is slowly getting bigger and bigger. I am not looking for trembling in her tongue and lips and the fact her palate is high, I am not going to know this and if you look at every single thing that you think is different I would spend my whole life worried and constantly on Dr Google and would end up with no hair within a week. So I will remember what a very good friend said, I am not to blame I am a good mum. Its sentences like this that get you through the hard times and its friends that know you are struggling and have struggled in the past that can really help with coping strategies and understand your struggle is real and you can’t help it. They have a big impact on your life without even realising that the tiniest conversation with them has helped more than they will ever know.
Today is also BBGs 7 month birthday. I know it’s not a big mile stone but to us it’s huge! It’s 7 months of the last firsts, first smile, first laugh, first babble! We still haven’t had the first roll but that will happen so today I am rather deflated. It’s a stupid thing to get sad about, I mean SB was our last baby before BBG said nope you need me too, I have 4 beautiful children and yet I can’t help but feel sad. It’s really strange, although dad and I agreed the snip was best route to go and we had that while I was pregnant as soon as that happened it made it final…. no more babies or feeling the kicks inside me… it’s just strange knowing there will be no more 7 month birthdays.
Tuesday was MOs SENCO meeting, well it’s always nice to hear he reacts the same at school as at home, it was also nice to hear the positive things the school has to say about him. To hear his positive attributes just makes you realise he is so much more than autism. Hopefully with the new schemes put in place he will cope a lot better at school on days he struggles with. As for now he is happy to be a dinosaur 95% of the time to cope and this is fine. Knowing he is passionate about things just gives me hope for the future, plus reading there are companies who like to hire just people on the spectrum also gives me hope for MOs future. At the moment he is doing some dinosaur game on an app and is learning all about dinosaurs and what they ate. So glad for apps as they can teach him so much more then I can on subjects I don’t know about! I have to admit MO is one of the reasons I am exhausted, his wandering at night time has got worse this last week and means I am just constantly on a light sleep so I can hear him.
The weather has also started to get warmer this week, que spring outfits and wood trips!
This week after school Dad took the big kids to the woods, I stayed at home with BBG as her feeding hasn’t been great this week. The kids loved it! MO was in his element. Nature and building and problem solving!!! He’s excitement was magical and he told me all about his den and how he improved it. Even BG was happy, she has been extremely hard to get motivated at the moment so it was such a joy to hear her laugh about the woods! As for SB he didn’t even get to bedtime stories being read to him he was soundo by the time the clangers had finished! What was a miracle was that MO didn’t lash out at the routine change and was ok the following days (other than the nighttime) it was just a very positive experience all round.
SB on our 121 time decided to have a snap chat session with me and safe to say he loves a good old filter they make him laugh so much. He is such a joy and yet there have been a few times this week when you have wanted to put ear defenders on, I can’t remember the others doing it but SB is at the stage of just crying and whinging even when you have given him the apple he has asked for. I think it may just be him reacting to everything around him but wow he could win an olympic gold medal for the whinging! Then when you have had enough and think your ears are going to fall off and all your hope has vanished he just comes up and gives you these magical hugs, looks you right in the eyes and says he loves you. You can’t stay too mad at him after that. Even though it slightly brusies your heart as you know MO never has and probably never will do this.
SB loves this video of me, he gets me to play it to him at least 5 times a day since recording it and still fills the room with laughter watching it.
For BGs 121 we went to see beauty and the beast and I took her to have a little meal out just her and me. I love spending some time just 121 with the kids you really learn more about them and how wonderful they are. Can’t wait for our next 121. Thinking just a stroll along the sea front to take her eyes of screens! It did break my heart that she know she gets distracted as she asked whether she will ever be able to drive with the fact she can’t concentrate. The worries she has and the changes she has had to cope with in her nearly 8 years I can’t begin to comprehend! I think she needs some sort of therapy just so she can unload everything, my bright little sunshine has turned more into the moon and I just want my happy girl back. I don’t even know where to begin with therapy or who to ask about it. I just know it will be good for her. Even though she has no ASD, no muscle condition no nothing she has another diagnosis and that is a sibling of special needs child that alone is tough and maybe sometimes harder as MO has no idea he is different but BG does…. Any help or previous experience of this would be highly helpful and appreciated.
We have started to wean BG … well I say wean, we put the food in her mouth and she stores in at the top of her mouth and then spits it out, if some does go down she seems to do this weird cough and then spits it out. Her health visitor is round tomorrow so we will ask her advice, she also has her first occupational therapy appointment as well as her usual physical therapy session, so surely 1 out of the 3 will be able to help or give some advice. I never thought a 7 month old would be this difficult! At least MO hasn’t been so hard this week so it has meant we can concentrate on BBG.
I will say I did manage to get to my baby class and even saw 2 friends for a catch up! PROGRESS FOR ME!!! I can’t begin to express how big this is, I was determined I would do this and I did even if I left one baby class early to get to an appointment, I felt so much better for being out and about and out the house! I even wore some make up and did my hair a little. I feel a lot more like the old me and yet at the same time feel like I have gone backwards at the same time! I just don’t get it… How can I progress and then feel like I am back at square one, how can I cope so well one day and with some things and laugh like normal and yet the next day or even the same day feel like I am claustrophobic, that the world seems like it is closing in on me, that I can’t breathe and that the weight of everything is crushing my chest… I just wish I understood it a bit better. I understand when I am constantly struggling but being so up and down affects me so badly I just wish I knew why I did that.
Although I will take some advice (will a life lesson) from BBG, she maybe 7 months old but the fact that she can smile even when she is having such a bad day just makes me think… I won’t cover my emotions by a fake smile but the fact she smiles at bad times and sees the joy even when she can’t move just makes me have a little bit of a fight to be able to do something similar.