Ben

Listening to Lungs (Part Two)

/ jess / Leave a comment

Today I took Molly to the GP to talk about something completely unrelated to her lungs, but while we were there I asked about the hacking cough that Molly has now had for over 3 weeks, which is extremely slowly improving. He said he had noticed it already and that it sounded viral. ‘I’m like a mechanic who can tell from the sound of the engine what’s going on with the car.’ He listened to Molly’s chest and confirmed there were no crackles, no need for antibiotics. As the doctor then did something on his computer, I told Molly that this was the room where I brought her as a baby. I’d put her in a special baby bowl on top of scales (though not that often because she was my third baby, who breastfed extraordinarily efficiently).

I knew he’d say her cough was okay. I would have taken her to the doctor sooner if I’d been worried, but I hadn’t been. She wasn’t otherwise unwell, and nothing about the cough had pricked my antennae. It reminded me of seven years ago when I took Ben to sit in the same doctors surgery to wait an undetermined length of time to see a doctor, because I didn’t like the sound of his cough. There weren’t any appointments, and when I arrived the receptionists were saying there were too many people waiting to see doctors. Ben wasn’t that ill, but wasn’t well, and I knew the sound of that cough was wrong.

The GP listened to Ben’s chest and diagnosed a chest infection, and once Ben had antibiotics he rallied. It was a relief, because I was in the early stages of pregnancy with Molly, we had just moved house, and I was being pulled in a million directions – trying to unpack boxes before passing out with the exhaustion of growing a small foetus. One of my many worries had been Ben’s cough and I felt so vindicated that I had been right.

I’m six more years into parenting now. Still making most of it up as I go along, but feeling like maybe I at least have coughs down?

Advertisement

Sister Molly

/ jess / 5 Comments

Ben and Max’s sister, Molly, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

IMG_0117

That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Max broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Ben started crying because Max was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

IMG_0103

Both boys have been unbelievably sweet with Molly, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Ben has shown once again that he can cope with a lot of change and take it in his stride, while Max has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

IMG_0082

We do not approach birth lightly. Ben’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Max was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Max. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Molly was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

IMG_5818

We have now had four weeks of admiring and nurturing little Molly and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

IMG_0214

Brothers and sisters

/ jess / Leave a comment

All kids look up to those older than them, and Max is no different. Ben is almost 6, Max is 3 and Max wants to do all of the things Ben does: go to school, go swimming, watch Dennis the Menace.

Max knows Ben is disabled and because chronology is tricky when you are 3, Max wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Ben’s, or go to the same school when he’s disabled.

There is something bittersweet about our able-bodied son climbing in to Ben’s wheelchair when Ben isn’t using it, about demanding to sit in Ben’s specialist supportive chair to have his snack. I hope it continues like this – Max’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.

Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.

One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Max was super keen even though the chairs were way too big for him, and off he and Ben went to race (with James pushing Ben). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.

I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Ben’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Ben of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Ben gets the lions share of our attention, of everyone’s attention. Ben’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.

Max is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Ben’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Ben rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Max was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Ben is in our family’. He thinks people shouldn’t click in Ben’s face, but he likes the general idea of clicking.

We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Max loves his brother. He wishes Ben didn’t go to school so that he was at home with us every day. He makes us buy Ben toys so he isn’t left out .

IMG_1871 (1)

Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Ben, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Ben. And we all laugh more. We now have to charge the stimulator in Ben’s tummy daily so Max has been comparing Ben to an iPad. Ben thinks this is funny as do we all. (Yes, we overuse screens in our house and Max spends too much time with an iPad – another consequence of being Ben’s brother).

So let’s hope we can produce another one like Max. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.