I would have heard the news today but, oh boy … I was kind of busy. It went something like this…
5.55 Why am I awake? The alarm is set for 6.29 (yes, I’m odd like that). I usually wake 5 minutes before one of the kids does in a spooky they’re tied to me by invisible elastic way I’d never have believed was possible before having children. But I can hear Boo snoring. So it’s not that. Come on, I think, go back to sleep. It’s a lie-in day today. Boo has an appointment at 9.00 so no really early start to get to work. No commute. That’s it, close your eyes. Ahh… Bliss.
6.00 The fun begins.
Sissyboo [in scary, raspy, whispering, indignant voice]: ‘Where’s the IPad?’
Me [grumpily]: ‘Sissyboo, it’s 6 o’clock, I can’t even remember my name let alone where the IPad is’.
Sissyboo: ‘Your name is Mummy and I need to watch Tracey Beaker’
Brief internal monologue begins about how I’m going to be a better parent today, not let my daughter watch the IPad in the half an hour before I get up. I lose the argument with myself. First compromise of the day.
Me: ‘Check by Daddy’s side of the bed’.
Sissyboo: ‘Got it.’
6.02 Close eyes.
6.03 Woken by thumping of 6 year-old daughter/wanna-be elephant plodding down the stairs.
6.04 Close eyes
6.05 Boo wakes. He sounds happy. Bless. Close eyes.
6.07 He’s not happy. Get up, trip over books Sissyboo put on the landing before locating the IPad. Don’t look at the ceiling so as not to see those cobwebs I’ve been meaning to dust down/vacuum up for a few days. OK, I mean a few weeks. Alright, a few months. I told you, I’ve been busy…
Get Boo and take him to our room for snuggles before getting up. Close eyes. Baby Hulk, I mean Boo, whacks me in eye. Open eyes. Close them again. Boo whacks the other one.
Repeat on loop until 6.19. Ouch. Oh well, the alarm’s going off in ten minutes. May as well get up.
6.19 -7.15 Breakfast for kids and us. Find a chair Boo is happy/posturally sound enough to sit in while we get things ready to eat and empty dishwasher. Ask Sissyboo at least 30 times what she wants before getting a ‘totally, definite’ response to waffles in a lull in Tracey Beaker. And then she changes her mind… I get indigestion while eating my muesli, while picking up the Fisher Price eggs Boo keeps dropping on the floor and making their cereal and crumpets, drawing up medicines and making a bottle, while practising counting in 5s with Sissyboo. 85, 90, 95… I must buy some Dycem to stop him chucking him toys around due to his lack of arm control, I muse. I have been meaning to do that for weeks. It’s on the to-do list. But the to-do list is so long it’s about to trail out the back door.
7.15-8.15 Feel smug that I packed everyone’s bags last night, did all school admin etc. Then I remember I’m an idiot and I need to take an extra change bag for hospital visit before nursery (for which we have a different bag) in case Boo vomits/fills nappy/drools like a hungry Scooby Doo, or needs toys because our appointment is running an hour late as usual. Go upstairs to sort that out. Curse my disorganisation. Trip over the books again. Don’t look at cobwebs. Check to see if Sissyboo’s toothbrush is wet and that she really has brushed her teeth like she said she did (regular Miss Marple me). It isn’t wet. I ask her to do it again. ‘I am practising my numbers’, she says. ‘You can do that with clean teeth, too’. Pre-teen grunting ensues.
Go back downstairs. Kids dressed. First major exercise of the day completed. Who needs Zumba when you are trying to clothe an 18-month old with quadriplegic cerebral palsy. The Ipad has run out of puff. Shock horror! Sissyboo is putting her shoes on the wrong feet as a protest, claims not to know where her Tangleteezer is and asks for ‘Polly-dolly bunches’ for school. Boo has vomited his Epilim (anti-seizure meds) all over his clothes. It’s cherry red. No mother worked on the colouring of this medicine. Go back upstairs to get another set of clothes for him. Trip over books. Again. Don’t look up at ceiling. ‘We are going to be late’. I will utter this at least 45 more times in the next 3 minutes.
08:00 Head off for the school breakfast club. On 6th attempt we actually make it out of the door with all necessaries in tow. Pass the lovely lady at the corner shop who stops us to ask if Boo is walking yet. I cry inside. I should just tell her he may never walk, but it seems selfish to say something to make life easier for me which will make her bad for being unwittingly insensitive. Hope she won’t ask next week. I know she will. She always does.
08:20 Head for hospital. Entertain Boo (and staring folks in the waiting room) by pulling faces for the 30 minutes we have to wait as things are overrunning. Appointment OK. Lots of plus points; but lots of causes for concern, too. Struggle to work through the emotions. Given homework for Boo (more and different exercises) and for me (equipment to source and purchase and things to talk to nursery about). Heart sinks.
10:00 Head to nursery with head still in appointment. I have to finish to get Sisyboo at 15:45 today, so it’s a short working day. Hope drop-off is painless. Boo grins like crazy as we go in the building. Try not to catch eye of manager in office as walk past as I’m in a hurry. Fail. Have a nice chat about Boo’s progress and a not-so-nice chat about his non-progress. Put best positive spin on things. Finally say disingenuously, ‘Mustn’t keep you’ and head upstairs. Boo still grinning. Go into room. We see his beaming and lovely key worker. Boo beams back. He is such a flirt.
Hand him over. His bottom lip goes and the wailing begins. Try not to let it bother me. After all, it has happened most days he has been there for the past 6 months. Die a little bit more inside. Put on brave face. Make for hasty departure. But Boo’s care plan and IEP need updating and signing, apparently, can I do it now? Well, it’s not like I’m busy, so sure. And I know it’s important. So of course, I do it. More conversations with keyworkers about his progress/non-progress. Brave face starts to crack. Must. Not. Cry. Can hear Boo screaming. Need to go. Have to work. I hate this.
10:45 Get home. Want coffee. Need coffee. Need a hug more. Decide no time for either as so pushed to get work done. Head down. Crack on. (Don’t look at the pile of laundry that needs putting away, ignore the pile of post that needs addressing, the light bulbs that have needed replacing for weeks, the floor that badly needs mopping. Working from home ain’t all it’s cracked up to be, even though it’s been a lifesaver since having Boo.)
11:15 Set to work.
11:16 Phone rings. It’s Social Services updating me on equipment order. Good news. Happy to hear it. But need to get off the phone. Too much to do. Asked if I’ve chased up another person who Social Services OT wants to speak to. Irony is that this elusive individual we’re talking about is the person whose job is to liaise between all people involved in Boo’s care. We laugh at how silly it is that she is the hardest person to track down. Promise I’ll call her and email her again and pass on the OT’s details. Heart sinks further.
11:45 Head down. Crack on with work. But my mind is distracted and still in the appointment. Start thinking about the major household adaptations that I just discussed with the OT on the phone. Don’t want to think about them. Can’t stop thinking about them. Need to get back to work.
I know. Check Twitter. Ah, tweeps are lovely. Ooh someone says they left a comment on the blog. Go check that. Can’t let that go unanswered. Write reply.
12:10 Get back to work. Stomach rumbles. I need lunch. I don’t have time for lunch. Oh better write that email to that woman Social Services talked to me about. And I want to write a blog post. Maybe I’ll feel better if I write a blog post. No, 30 minutes more work. Those deadlines are not getting further away.
12:15 Phone rings. One of Boo’s Consultant’s secretaries is phoning to arrange an appointment to talk through in person what I’ve already talked through on the phone with another consultant. So, you know, I think that constitutes talking to a person. I ask if it’s really necessary we have the appointment. I’m told it is and given an appointment slot. It’s on Friday at 10:30. Two days notice, because I have nothing else going on in my life. (Bear in mind they sat on these results for 6 weeks!) And on a day when I can only work a morning because Boo’s Portage is at 13:00 and for which I have to pay for a full day at nursery. I ask for another time slot because I work. I’m told that there isn’t one. Clear implication is I shouldn’t work. Thanks, sister. ‘OK, we’ll take that appointment’. Heart completely sunk now. Another night will have to be worked through.
13:00 Grab a piece of toast and eat at desk while working.
15:45 Get Sissyboo. Look down at my feet in the playground as I’m feeling a bit fragile and don’t want people being kind to me. I’ll cry. Notice I am wearing blue socks (The Grumposaur’s size 13 socks on my size 6 feet as I couldn’t find any belonging to me without holes in) and black Alice shoes. Don’t look at feet. Look at coat. Curses. It has Epilim vomit on it. I don’t belong in this playground of immaculately and expensively dressed, mainly non-working Moms. Sissyboo comes out and gives me a great big hug, which makes it all OK. And then we get Boo. These are the happiest moments of my day.
16:15 Sissyboo wants to make a cinema out of a shoe box. I say fine. She won’t do it alone. Grrr. Boo needs physio and 30 minutes in a standing frame. They both need dinner. I make dinner, help craft a cinema out of a shoe box including a popcorn stand, all while singing nursery rhymes to Boo in his standing frame and picking bits of pasta he’s thrown off his tray off the floor. I get told my popcorn doesn’t look very realistic and am asked to do it again. Everyone’s a critic.
17:00 Dinner time. The house has turned into a bombsite. Quickly check work email while going to the fridge to get two Frubes for their pudding. I have had 70 emails since lunchtime. 10 are about Boo. 60 are about work. 20 need nearly immediate attention. One asks for a 2000 word report for a committee meeting by 08:00 the next morning that on of my allegedly too busy (childless, glamorous, gallavanting) colleagues can’t do in time and I am ‘such a can-do colleague’ they know I won’t ‘let them down’. It was sent at 16:49. After they’re in bed, I think…
17:20 Right, one lot of physio at nursery during Boo’s one-to-one doesn’t cut it in Boo Land. He needs more. So we need to fit in half an hour of physio while doing Sissyboo’s violin practice and her sounds of the week. Good job ‘Twinkle Twinkle’ is multi-purpose. Music to learn the violin and do physio/speech and language and fine motor therapy to.
18:00 Bath time, aka break my back again time. Boo enters the witching hour and becomes a banshee. Sissyboo, ditto. She won’t do anything I ask her to (toilet, teeth, undress…). It doesn’t help that I am so tired that I can’t even remember what it is that I need her to do. Contort my body into the strangest position to bath Boo without him drowning. Stop him eating bubbles. Wrestle to get him and his sister dressed. Milk, draw up medicine. Groundhog Day.
18:30 Give Boo milk while he tries his level best to pull out my remaining hair (I wouldn’t mind if he got the grey ones), while listening to Sissyboo read. Try to settle Boo. Read Sissyboo another story in bed. This should take 30 minutes. It doesn’t…
19:30 Stagger downstairs feeling knackered. Quick triage on the explosion of toys/therapy aids everywhere. Put laundry away. Wipe kitchen surfaces. Load dishwasher. Somehow get together a meal that can be prepped and on the table in 20 minutes. (Thank God I’m vegetarian and such things are possible.) While dinner is doing its thing, start on those emails. Oh lordy, there are 30 more now. And a ridiculously precious and anxious phone message from a colleague about a ‘terrible problem’ that seems just about as insignificant as the most insignificant thing I can think of. Sort it out in one email that took 3 minutes to write.
20:00 Eat. Like the Hound of the Baskervilles. Should I have a glass of wine? I have a lot of work to do. Yes, I will have a glass of wine. This is going to be a late one.
The Grumposaur wants to watch Breaking Bad. So do I. Or the second series of The Killing. Or an episode of 30 Rock. Surely I have time for an episode of 30 Rock. Without the 1000 ad breaks it has in the States it lasts 20 minutes. But I don’t have even 20 minutes.
20:30 Start work.
22:30 Stop work. Look at Twitter. Want to chat to people. Want to blog. Can’t.
22:45 Start work again.
23:45 Stop work. Pack bags for next day. Check what appointments we have, if school letters have been answered.
23:58 Go upstairs. Trip over the books again. Turn off the light so I can’t see the cobwebs. I will tackle the cobwebs tomorrow. And the work I didn’t finish today, and the next lot of laundry and the therapy homework and go for a run (I need running back in my life), oh and organise the 2 years overdue eye test I need … Oh stop thinking about it all, for the sake of all things sanity bearing.
23:59 Is the Grumposaur asleep? Yes. Good. Hide under the duvet in case. Write this post.
It rarely is any other way.
This is my entry to the Mum Network Trusted Blogger Club Autumn Blog Carnival.
And, honestly, this really did all happen in one day.