My cousin recently commented on my 21 times I nearly lost the plot post, that “without the plot loss we’d have no contrast.” It’s so true. The difficult times definitely give me a greater appreciation of the great times. I remember describing to a group of travel writing friends my joy at being in Central Park in New York. I told them that I felt like I could break into song randomly like in the old movies. I wasn’t sure I’d ever tick it off my list when BJ was diagnosed with a disability so my appreciation of being there, standing in Central Park, was ridiculously giddy! I think they all thought I was slightly off my trolley but it’s hard to explain to people the unadulterated joy of doing something you weren’t sure you could do. I feel on my travels prior to BJ’s birth, I was somewhat casual not really taking it all in with the same level of appreciation that I have now. So, in what will be my final in the 21 series I’m sharing 21 moments of joy.
1. BJ’s arrival
I was so happy to have BJ arrive safely and without dramas. I’m also pleased to have had 3 blissful months without worry as BJ wasn’t diagnosed with cerebral palsy until he was 5 months old. In that time, I got to know him without therapy or concerns and it was wonderful.
2. Sitting
I still vividly remember the day BJ sat for the first time. He went to bed that night and I wondered if he’d still be able to do it the next morning. I couldn’t wait for him to wake up (imagine!) and when he did, I grabbed him out of his cot and plonked him on the floor and was thrilled to see he could still do it. Ditching the corner chairs and the insert for his high chair and pram were all joyful moments attached to that achievement.
3. Being naughty
I’ve said many stupid things over the years but telling a therapist, “I just want him to be naughty!” is probably one of the best. Being a toddler and being naughty usually goes hand in hand but BJ didn’t have the mobility to get into mischief early on. That changed the minute he got moving and it was delightful – for a while!
4. Self-propelling his own wheelchair
BJ always likes to be hanging on to something (a book or wallet helps him to stabilize) so it seemed like he would never use two hands to self-propel. That was until he came across a teacher who wouldn’t take ‘No’ for an answer. Much to the horror of his bus driver, the teacher wouldn’t let BJ on the bus until he self-propelled himself to it. BJ desperately wanted to get to the bus each day so eventually the teacher won. I wouldn’t mind her coming around and working on a few other things for me now!
5. Turning on light switches
For someone with limited hand function it has been interesting to see BJ work so hard to be able to control his environment by turning on and off light switches and open doors. It might seem like a minor gain but it has helped in many ways. Most recently, being able to power on his iPad by isolating a finger and turning it on. It does mean that no-one dares go to the bathroom without locking the door!
6. Getting a Hart Walker
It was a nightmare to actually put a moving and grooving BJ into the Hart walker but such a joy to see him upright without anyone holding on to him.
7. Learning to hug
Popping your arms around someone and showing them that you love or care for them is something most of us do without thinking. BJ took a long time to do it but he hugs with such love and meaning it makes my heart melt. He’s so strong now he nearly knocks my Mum off her feet with the love that he exudes when giving her a big bear hug.
8. Independence in the pool
BJ fought swimming lessons and it took a change of instructor and AJ hopping in with him to win the battle. We were quite determined to persist because we knew how good it was for the strength in his leg muscles. Thankfully we persisted and he reaped the rewards. Now he is independent in a pool (with close supervision) and we strongly believe his work in the pool helped his walking. It is now lovely to go swimming as a family and see BJ independent and as a parent to have the freedom to swim myself.
9. Walking and standing independently
It still gives me a heart attack when I see BJ standing up ready to launch himself across the room. He thinks it is wonderful and the joy on his face makes me smile.
10. Seeing a little girl at preschool communicating with him
A little girl in BJ’s preschool told me she’d asked BJ a question and he had answered her. I asked her how she knew what he wanted and she explained that she had worked out a communication system with him. He had to touch a certain hand for “yes” and another for “no”. I thought it was gorgeous that she had put thought into it. Watching him being accepted and included at preschool by his peers put so many of my concerns at ease.
11. Carers putting in the extra mile
There have been some amazing carers along the way. I love it when BJ has someone taking care of him like I would. When they think to take a jacket off if he is hot, make sure he is offered choice and so on.
12. The relationship blooming between AJ and BJ
Watching these two together has been a total joy. Whether it was snuggling on the lounge together, AJ sitting on BJ’s lap on the wheelchair or the moment I turned around in the car and saw them holding hands. There are just so many moments where these two have brought us joy.
13. Seeing BJ’s humour develop
BJ has a wicked sense of humour and because he is non-verbal it often catches us off guard. He’ll laugh as I mutter about someone in traffic, kill himself laughing at Mr Bean and join AJ in laughing at my expense.
14. Watching him make connections when travelling
BJ loves interacting with people and is incredibly social. Travel fulfils this need and it has been wonderful watching him make these connections when we travel
15. A full night’s sleep
On the incredibly rare occurrence when BJ has had a full night’s sleep, on his own and without any wake ups, it has been the most joyful experience ever. Oh, how I wish we had more of this kind of joy.
16. Seeing his joy
Seeing BJ having fun, doing something he really enjoys, fills me with happiness. I find his smile infectious. Sometimes he smiles so hard it seems he could bust!
17. Treating everyone like a rock-star
Whether BJ has seen someone the day before or year before, he treats people he likes and loves like a rock-star. His smile and excitement is over-the-top but it’s rare that it doesn’t bring a smile in return.
18. Parties
BJ loves a party and I guess they are not as plentiful as usual, so watching his joy at a party is gorgeous. When he went to his mate’s party earlier this year he was too excited to eat or drink until it was over, despite, all his favourite foods being in plentiful supply.
19. A special experience
When BJ was little he used to work so hard at therapy that it was wonderful to have a special experience. Watching him meet the Wiggles back stage and seeing he and his mates filming with Hi 5, all brought a welcome reprieve from the hard work. He had so much fun.
20. Determination
BJ finding his determined streak has been a double edge sword. When it is working towards him gaining a new skill, it’s wonderful. When I am on the other end of the determination it isn’t quite so joyful. All-in-all it has really been a good quality. Seeing him using it for good rather than evil brings me joy!
21. Birthday fun
It only seems fitting on BJ’s birthday that I mention the joy it brings to see him expertly unwrap his presents and bust them out of the packaging. He loves his celebrations and can’t get enough of opening his gifts.
I hope you’ve enjoyed the last in my 21 series. It has been an interesting exercise for me. Usually I feel a bit funny about another year getting away from us. It’s a reminder of how far we are from others the same age as BJ. Writing down all the lists has really put a different spin on it this year. It’s been a fabulous way to remember how far we’ve all come, how much BJ has achieved and the joy we’ve experienced.
If you missed any of the series, you can catch up by clicking on the titles below –
21 Lessons since cerebral palsy diagnosis
21 Times I nearly lost the plot
21 changes in the area of disability
If you’ve got any suggestions for future topics like these please let me know.
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