MBIA: Missing But In Action
It's been 6 months since I last wrote a blog post, and at that point I'd just given birth to our beautiful Ollie. I had planned to blog a lot more about it, I need to tell our story. But life got in the way.
To summarise:
May: Ollie was born, in NICU for 3 days. Some of my stroke-related deficits became more apparent, but no one in the hospital was willing to provide assistance.
June: Ollie's first blood test (which woke up the entire hospital at 1am), I was 'held hostage' in another hospital by doctors who didn't know what they were doing, we came home and tried to settle into life as a family of 3, my first birthday as a mum was a non-event, I learned that enough sleep is a relative term.
July: Ollie hospitalised after a stuff-up with his blood test showed there was something wrong (luckily it was an error in the test and there was nothing wrong), sleep became more and more of a distant memory, we had "hip-displaysia-week" and "you-need-to-see-a-geneticist-because-your-baby-looks-odd" week, more blood tests for Ollie in which we again learned just how loud an 8-week-old baby can cry (and we woke up the entire hospital again!)
August: a community nurse FINALLY listened to me when I said Ollie was having trouble feeding (he'd gone from 50% to 3% in 8 weeks), she found a tongue-tie and that his palate was arched so he couldn't suck properly, and his tongue needed exercises to strengthen it so he could suck. We started at a special playgroup for babies who needed more help at yet another hospital. We also had "does-he-have-a-cleft-palate?" week, "check-his-hearing" week and started "waitlist-to-check-his-vision" months. Ollie transitioned onto "squeeze-bottles" for all his feeds and weekly monitoring of his weight gain and calorie intake. Mummy tried to start her uni course again and then withdrew because it was too much.
September: we moved house, we went on our first short family holiday (where it rained the whole time and was just like being at home except without the comforts), continue with playgroup and monitoring.
October: Mummy had to go back to work part-time and Ollie went to "Grand-Care" (like daycare but better - he was with Grandma and Grandad). Ollie discovered that Grandad is his best mate and Mummy discovered just how hard is it to drive away and leave him. We also had “not-every-speech-therapist-is-interested-in-helping” this month. Ollie continued to go to playgroup and the therapists there did wonders with him.
November: trouble at work with the library helper begins, Mummy misses Ollie even more and wonders why she went to work. Daddy gets a virus that lasts the rest of the year. Ollie has consistently put on weight so the twice-a-night feeds are dropped to once-a-night and Mummy thinks she might get some sleep (think again!!). Eye clinic for Ollie gave him the all clear (or: what else is NOT wrong with him). Mummy again started her course…with limited success (I haven’t dropped out yet!)
December: Daddy still sick, still trouble at Mummy’s work. Ollie now gets excited when he knows he’s going to Grandcare – and gives me a dirty look when he thinks we’re going to Grandma’s house but we actually go somewhere different! Our first Christmas as a family started with us deciding to ‘self-evacuate’ a few days before Christmas, ahead of catastrophic weather conditions and a fire burning in the valley behind our house. Thankfully we were able to return safely over Christmas but remained on high alert.
I’ve stopped with the brain training exercises, I stopped many of my self-care activities, stopped exercising, stopped doing all the things that helped make my life post-stoke manageable. Partly this was a natural progression after a caesarean and a new baby, but a lot of it was down to the lack of support available for young survivors. And a lot of that I put down to a lack of education and understanding from the medical community and the rest of the community at large. I have had to manage on my own with whatever support my family could offer. While I do have the use of most of my body, it’s not the same as having a fully functioning set of arms and legs, a fully working brain. I know they say everyone gets baby-brain, everyone struggles and I have no doubt that is true. I’ve had to learn how to do everything a new mum normally does and had to choose to ‘miss out’ on some things because I couldn’t do them independently. And I can’t express how heart-breaking it has been to have other people do things that I expected to be able to do myself.
My mental health has not been great and I have struggled with many things. Feeling like a ‘bad mum’ when you just can’t seem to get things right, when sleepless nights leave you so fatigued and brain-fogged that you can’t remember what you’re doing when you’re in the middle of doing it, when you wish they would sleep for just one hour so you can too. To answer the community nurses honestly, that no, I wasn’t enjoying him or being a mum. I have resisted the temptation to ask for medication to help, because I know that it will sap what little independent brain that I have managed to salvage. It has honestly been the hardest time I’ve had since recovering from my strokes.
Would I change it? Honestly… no. I’ve wanted to be a mum since I can’t remember when. Would I like a different experience next time? Yes, I would. Which is why I am taking up the fight again, to try to get people to understand that the things they say, the little decisions they make, the looks they give you, the times they ignore your requests and won’t explain or won’t help, have a lasting impact.
I still struggle to believe I actually had a baby myself – and I put this down to the fact that I didn’t get to hold him straight after he was born, that he was whisked away in one direction and me in another, that information was withheld, that I spent days in a shared room with mums who had their babies with them while I sat watching them and not knowing what was going on and not feeling empowered to say that it was wrong. That I was not supported to be able to spend time with my baby because it was too hard for the staff to get a wheel chair, or provide a curtain or a chair, to spare the time to help.
But… 2020 is a new year and a chance to move forward. I’m going to try hard to accept what has happened and start enjoying being a mum.