I missed Good News Friday last week in the whirlwind of finishing work (well, sort of, it’s never really done or entirely left behind), school ending for the term oh and a series of frankly scary panic attacks occasioned by the run-up to the anniversary of Boo’s infantile spasms developing.
Let me start off by saying that I seem to have been worried unnecessarily about that and the culprit for Boo’s behaviour seems embarrassingly benign. Yet as Boo’s consultant said to me, in a welcome moment of empathy on the phone last week, it isn’t quite true to say that I was worrying unnecessarily. I was worried because I am his Mum and we have been through so much in the past 20 months and my worry has in the past helped get him urgent treatment for various conditions. Worry is as much the job of a parent as love. And the worry (and the love) multiplies significantly when your child has additional needs and complex health problems.
I wasn’t going to argue with him. This has been one heck of a 20 months. The last 12 have been even more challenging than the first 8, and I didn’t think that was possible, to be honest.
But when I think back to where we were 12 months ago, I realise how much good news there’s been and how many things we have to be grateful for.
So in the spirit of the season, here are my good news highlights for 2013:
1) We’re still standing. I have to say that there were moments when that wasn’t a given. There have been moments of real sadness and fear (especially last Christmas when his epilepsy was diagnosed) and the challenges of being in near isolation (because of dangerously suppressed immunity) on 3 hours sleep a day for 2 months when he was on high-dose steroids. But we got through it. It hasn’t always been easy and I have relapsed a bit in recent weeks but we are stronger than we thought. I am stronger than I thought.
2) Control of Boo’s seizures. Like much of our good news, I write this with a strong sense of how provisional our life is. Things can change. They do. Often. But the good news is no less good for that and this is a biggy, so I am going to celebrate it even if you’ll excuse me for crossing my fingers as I type. As far as we can be certain, Boo has had no seizures since the first day he went on high-dose steroids in mid-January. Much is unknown about infantile spasms, that most ‘catastrophic’ of seizure types. But early effective treatment is clearly a good thing for long-term outcomes and we are so grateful that he was diagnosed a few days after they began and that the steroids did the job.
3) I ran a half marathon. Let me type that again. I ran a half marathon. I still can’t quite believe that I did this. After having Boo I was unfit, overweight and exhausted by the stress of prematurity and life in the NICU. But I was also grateful that he had been saved. That he had come home to us and I wanted to do something for Bliss who do so much to help children in special care and their parents. Nothing I could do would be equal to my gratitude and nowhere near equivalent to Boo’s struggle to survive and thrive. But, I reasoned, a half marathon would push me (a non-runner all my life) harder than I’d ever pushed myself before. Of course, I didn’t know just how hard it would be until the sudden misery of the onset of Boo’s spasms and all that came with it. How I ran it, while acutely sleep deprived, depressed and breastfeeding, if beyond me. Somehow, I managed. Recently, the running has slipped by the wayside and has been sorely missed. Next year I plan to start training again, and have some races planned (including another half marathon, this time in my home town in September). My goal is to do a full marathon in 2015. Watch this space. I will do it!
4) Returning to work is the main culprit for my lack of running but it was a huge personal milestone for me and has to be on my good news list for the year. I had to delay my planned return for many months because of Boo’s epilepsy and the logistical and health problems (for him and me) it caused. It hasn’t been easy being back and new challenges lie ahead on that front from January, but for now work feels mostly right and it has brought a different structure to the day-to-day, much-needed financial stability and a bit of head space. A bit of time to be the bit of me that isn’t a parent or carer. I nearly lost her for a while.
5) Getting help. Reaching out to accept help from others is not something that came easily to us at all. It still doesn’t, but as a family we have needed all sorts of support this year. A kind GP who saw me last year, for instance, arranged for me to have a short course of cognitive behavioural therapy to help with the severe depression and anxiety that began early in the year. And then Home-Start came along. I want to write a separate post about my mixed feelings about our volunteer visiting us for the last time last week. But for now let me just say what I’ve said on the blog before. Home-Start is amazing! They extended help and friendship to us. Our volunteer gave me a couple of hours of near peace once a week. To drink a cup of coffee while hot. To catch up with the endless medical admin or do laundry. She put me in touch with a local and marvellous carers association which helped us with our DLA application and which has been invaluable for buying much-needed equipment (like a specialist car seat and wonderful but extraordinarily expensive activity mat). And latterly, and this is what I am most grateful for, our Home-Start volunteer had Boo for a couple of hours a week so that I could spend time with Sissyboo, who has been through so much in the past 2 years and who misses a mummy who has to keep going to hospital and doing therapy with her brother on a daily basis. As I said recently on the blog, I never thought mine would be a vulnerable family, but we are, nonetheless. And the kindness and help of others has helped us to be more robust and happy. Thank you.
6) And speaking of Sissyboo… What can I say? I hope this is evident from the blog anyway, but I’ll say it again: she amazes me. Every day. Dealing with Boo’s hospitalisations and an utterly wrecked Christmas last year was as big an ask as dealing with her brother’s unexpected birth at 29 weeks. If anything, it was harder for her (for us all) as it came out of nowhere. Then she had to learn what she already knew but didn’t quite want to believe. That her brother wouldn’t get better and will never catch up. That he has cerebral palsy. She frets about him. She worries for his future and wants it to be typical. Like hers. But for all this, all of her interactions with him are characterised by happiness, fun and love. I have never seen two children adore each other as much as the Boos. Her acceptance and love for him know no bounds and I have learned so much from her. Her brother is one lucky boy with her watching his back.
7) Battles won. If you read the blog regularly, you’ll be familiar with our struggles to get on waiting lists and move up them and the multiple administrative cock-ups and financial pressures that left him at risk of scoliosis. Two formal complaints, many months and floods of tears later and we are getting there. Boo now has the specialist seating he needs at home (although the OT has slightly broke his Bee seat in a review last week) and at nursery and also has standing frames even if we have a 3-month wait to get one set up. The improvement to Boo’s quality of life is fabulous and may prevent some of the surgeries that often go hand-in-hand with cerebral palsy. We have other battles to fight (getting an adapted buggy and then the big one: statementing and schooling). But we’re on our way. And have learned a lot in the process.
8) Even without equipment though, Boo is progressing. Glacially, but in the right direction. And in Boo Land we celebrate each step forward. Here are some of the things Boo can do at 20.5 months, 18 corrected. They may not be news in everyone’s worlds, but they’re huge in ours.
– Boo has great eye contact, an infectious and hilarious laugh. He loves people and wants to play with children and grown-ups constantly.
– He babbles (although without some sounds) all the time and especially in response to conversation. He can say (although not always distinctly to others) ‘dada’, ‘teddy’, ‘again’, ‘egg’ (favourite toy), ‘hiya’ and a version of his sister’s name. ‘Yeah’ is coming. He understands much of what we say, we think, and can point to flashcards (when offered 2) to identify a nominated object. We are working on widening his vocabulary and moving to 3 card choices and more complex formations (‘the boy sleeping’).
– Boo will listen to and be completely engaged by stories for at least 30 mins at a time.
– Boo has a pincer grip. It is not 100 reliable (far from it) but it is there in both arms and intentional.
– His arms and hands remain very stiff but he has considerable voluntary movement in both. He can grab many objects and manipulate carefully chosen ones well to play (banging a drum etc).
– Boo can roll front to back and from side to front. Rumour has it he has done back to side at nursery, but I’ve not seen it.
– When you eliminate the tone in Boo’s hamstrings by having him sit on a box or cross-legged he can sit for up to 1 minute or 30 seconds respectively. If he uses his arms for anything other than propping (which he is now quite good at) he topples. But it’s coming slowly.
– Despite the wibbliest (technical term) trunk Boo can pull to stand from box sitting using a ladder chair.
I want so much more for him, but I am so proud of what he has achieved.
9) Blogging has been the big revelation for me this year. When the year began I had no idea I would start a blog and the fact that I still write it amazes me. The fact that anyone reads it amazes me even more. The blogging/Twitter community has been fabulous. I have received all manner of support and information. I am a happier and better informed person for blogging. I have come to know and befriend many tremendous people with lives like our own and many with very different lives. I have even got to meet a few of these wonderful people, including Sarah from First Touch NNU (whom I am proud to call a friend) and Jennie at Edspire, whose blog has been such a lifeline to me. I haven’t always blogged as often as I’d have liked, but for now I’m determined that the blog is here to stay. I can’t imagine life without it.
So that’s it. Our good news highlights for the year. I hope there have been many for you too.