So after BBGs breathing stopping last weekend and MO going back to school after 3 weeks off. This week has been both physically and emotionally hard.
MO has been brilliant at school and has really settled back in well which was one less thing to worry about. At home it was a slight different story. He has been bouncing off the walls again, he has been hurting the other kids. He has been waking me up at all hours of the night. He has been struggling. I guess I am exhausted. Thankfully I haven’t seen him self harm which is brilliant it’s just the other things that have increased. I am grateful however, that at school he has settled back well.
MO playing with his tangle toy, calming down after having an outburst
My mum bought this book for the kids and I can’t wait for them to read it.
Monday came and we were rather excited to sit and relax and calm down while the kids were at school. Sorting out the mess that our house had become in a week and generally just rejuvenate after a busy half term week. Then just after lunch poor SB got sent home from playgroup as he wasn’t very well. Poor thing just wanted to sleep.
Tuesday our plans to go to the beach and go to the Poppy Wave to pay our respects to D-day were postponed due to weather and SB not being 100% so we stayed at home. SB slept and we got on with the house work around SB.
Come Wednesday SB was well enough to go out and we decided to go out in the wind with SB on his trike and go and visit the Poppy Wave. It was a brilliant trip, click here to read all about our time.
BBG has been up and down with her eating this week. Some days she can eat nearly a whole pouch of food, other days she is gagging on the food. That mixed with the hospital trip as she stopped breathing entirely, has been worrying me.
I guess it didn’t help that this week we were sent a 10 month review questionnaire and I could only tick 1 box to say she can do that movement. I’ve been so happy with her progression and then it suddenly dawns on you in moments like that, that yes for BBG she is improving on most things however it hits you in the face that she is globally behind. She isn’t late, she isn’t just delayed in one or 2 things she is globally delayed.
We also had a phone call from GOSH as they want to see BBG next week. I hope they have some genetic results, infact any results! Deep down I know everything would have come back negative but I have hope. They aren’t happy that her feeding isn’t progressing and her chest muscles seem to be regressing. We shall have to see what they say and what they suggest.
She did go into MOs Dark den and LOVED being with all the lights. She just laid there watching, taking it all in one light beam at a time.
Tomorrow we have the Manchester group WeTogethr down to do a promotional video on their cause. I am more than happy to have them video MO and get the word out for them as I am not sure what I would have done without the sensory equipment being donated.
This week with MO reacting due to the routine change, SB being ill and BBG trying to scare us, I am exhausted! I did start looking at equipment and that just made my brain muddled and confused. For the first time ever I felt alone, my usual mum friends or mum websites you look up to research the best pushchair and high chair all of a sudden seemed completely not what I needed. I needed the support group that said ‘try this adaptation it worked better then that adaptation for us’. I suddenly felt a lone in this journey, even though I have a lot of support emotionally and more in friends and family. I then found Firefly which is a community for disability families and I love it! I am so thankful I found this group. Again not that my normal circle of friends are not supportive but that support from people who know what your going through makes you feel less crazy.
Looking back at the week I guess I’m just exhausted so not thinking properly and the level of BBG and MOs needs has dawned on me properly.
I’m hoping this weekend I can properly pick myself up and get the energy and positivity back. As a mum of any child (with special needs or not) there are going to be times where you feel defeated and like the worst mum in the world. Yesterday and today for me are those days and I wish I could snap my fingers and get out of this slump, but I can’t, so I will just work through it, with the help of family, friends and support groups.