The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Thursday, December 3, 2015

Memory Lane

I'm going to take a little walk down memory lane now, if anyone cares to join me.

I don't often do this: the right moment just never seems to come. But seeing as it's coming up to another Boxing Day, and another Nippy Dip in the North Sea to raise money for Archway--the charity that provides short term respite breaks for Adam (along with many other services to many other families in the North East!), now seems to be as good a moment as any.

Before I say anything else, let me clarify two very important points:

1) I don't consider my life "bad" in any sense. I know things could always be harder, and I neither wish things were harder nor do I think that I have it worse than anybody else.

2) I don't actually wish my life were anything other than it has been. Truly. Even with all that may yet come back to haunt me in this post.

So last night for whatever reason, Brian and I started thinking back over some of the old times. We were remembering car journeys late at night to Morrison's to buy medicine for a howling Adam, yet another mystery illness we had no idea how to help him with. We remembered our first Christmas in Aberdeen, and spending five days in the hospital because Adam had pneumonia. He always has gone down in a heap when he's really ill, and this was no exception. We remembered a lovely couple from the university who came to visit us, and arranged for their daughter's school class-who was at the children's hospital to play music for the "inmates"-to come and sit right outside Adam's isolation room so that we could see and hear them well. I cried my way through that performance.

I remember finding lumps on his back and panicking because I looked up "soft tissue lumps" on the internet and of course freaked myself out. Another hospital stay, another set of tests and a biopsy. It was negative. Never found out exactly what they were, but they disappeared after a while.

I remember chasing him around for days and weeks on end, picking up hundreds of projectiles he'd launched off table/couch/shelf...watching him spin a bowl in the corner of the room, or spinning his bicycle wheel (we used to keep a bicycle upside down in the spare room so Adam could go in and "play", for hours at a time). We tried to keep him constructively occupied but he always returned to his phase of choice--watching the washing machine spin, chewing on the wheels of his buggy (that was a gross one!), watching the movie Cars, spinning a silver bucket in the corner of the front room, etc.

I remember being up all night, at least once a week or every other week for many years, while he suffered the effects of chewing on the buggy wheels or from any other mystery illness he'd picked up. A common cold for Adam would last months. One winter he was literally only well for one week between October and April. I kept track. I remember being tired, so tired. Praying that the medicine would kick in, that morning would come quickly, that I would have the wisdom to know what to do. Never did get hold of much of that wisdom, but morning usually came and the medicine almost always kicked in eventually.

I remember the long, long weeks off nursery and school. Trying desperately to think of things to do that would keep us both engaged and hopefully dry/warm too. Indoor soft play places were our dearest friends in those years, and we visited them all in turn. Rest had to be carefully orchestrated so that he didn't get too tired OR sleep too much and then be up all night. Usually he was up all night anyway, so our daytime nap was the only thing that kept me alive, even when I had to time it for 30 minutes. And force myself up when the alarm went off!! And start all over again...

Why walk down memory lane? Why relive those awful nights, and days, and illnesses, and worries? Because they are, for the most part, in the past now. And we are still standing.

If you don't have an Adam to look after, you just don't know the depths of worry, or fear, or being empty, or being tested to the limit that comes with that privilege. I've had many people comment over the years that I'm such a strong person (the subtext being "to deal with someone like Adam", well meant of course). But the real point is that I'm only as strong as I am because I've had years to learn what it means to be Adam's mum. I've been to the depths, and I've also experienced the highs. There are as many of those for as many low memories I have, I can assure you. Their place may be in another blog someday.

But all the years that I and we struggled with Adam, I longed for a break, for help, for support. I cried for it, I pleaded for it, I searched for it, in vain. And now, for the last three years since he was brought into the Archway family, I have what I had desperately prayed for all those years. When Adam goes to spend a few days and nights with "his friends", I know he's cared for, and safe. And I then have the time to rest, to do things with the other two that usually get pushed to the back burner because "your brother wouldn't be able to do that". I have a break from the guilt of doing something that needs to be done, like clean the house or cook dinner, but requires that I leave Adam alone for a few minutes that might then result in catastrophe, or at the very least a mess. And certainly some shouting too!

So when it comes to this time of year and a chance to raise the profile of and money for Archway by doing something crazy like freezing my arse off in the North Sea for 2 minutes, I am glad. I would do anything for this fantastic organisation that has given us a boost of life and energy in these last few years. Especially when they haven't exactly been easy either (that pesky cancer thing??)

It's hard though to communicate exactly what Archway means to me, and impossible to communicate to others what it should mean to them. Archway does the work that none of us really want to do, if we are honest. It does more than just provide rest to mothers, or care for disabled children like Adam. It keeps the whole community running. With rest and care whole families are kept functioning--to work, or serve in the schools, or just be a healthy part of society. This is a good thing.

It's worth a little humble stroll don't you think?

Please consider giving to Archway, however small you think your offering is worth. It all goes to a very good place. And I promise, this year I'll get my head in too!
When life is all smiles, it's good to remember where you've come from

Monday, March 10, 2014

The Princess Turns Three!

Last week we had Agnes' third birthday party, which she requested be a "Princess and Fairy party" according to her favourite theme of late. We duly acquiesced, though we had to hold it a day early as Daddy flew out to New York early on Thursday morning, her actual birthday.

The real theme of the evening, I believe, was improv: we found whatever costumes we had to hand and enjoyed a bit of live theatre with each other as audience before party festivities began. The pirate and the skeleton wrestled, the princess did some dancing and admired the Queen's gloves, the tiger communicated his distaste at being drawn into this nonsense, the skeleton and the princess danced, the pirate ate the princess' arm, the tiger stripped back down to his underpants, and so on. And most of us, on review of the photographic evidence, forgot to wash our faces after dinner!

Agnes enjoyed her presents, most of which had something to do with doggies. She loved (and used today for hours) her Minnie Mouse easel, the same one she sadly discovered in my bedroom earlier that morning and cried for desperately all the way to school! But the real delight of the evening was her new "Cupcake" bicycle--she immediately had to tear off her princess dress and hop on. What better way to express delight and truly experience your new present than to do it naked of course?!

She had asked for a princess cake, and I found that Sainsbury's had just the thing sitting on their shelf, so saving me from hours of baking, cursing and failing. Bliss!

Happy birthday Agnes, with many more to come!

Friday, February 21, 2014

Lessons from the Playground

Every afternoon I go to pick our middle son Caleb up from his primary school in Aberdeen. It's just around the corner from our house, which makes it much easier all the many days I need to take his brother and sister along with me for the journey. Most days that it's not raining or blowing a gale, Caleb asks to stay and play with his friends. I usually try to say yes, and then it becomes a game of What will end the play session first...friends go home or mom freezes?? Usually the latter!

The other day Agnes was at nursery and Adam was content, so I just sat on the benches, trying not to freeze, and watched the boys play. They run around in circles, playing this game or that one--mainly tig-and-tag. I haven't quite figured out if they just need to burn off their energy, need to assert some position in the "wolf-pack" (as they are known), or need to establish some level of friendship that the classroom has sublimated for the previous six hours. Probably they don't know either. Probably all three at once.

What I do know, having watched them for a while now, is that there is a lot of work to be done in childhood, and during this time that the boys are playing they are also most certainly working. Let me illustrate a bit more clearly.

Some days it's entirely laughter that I hear, happy noises from children content to run about and be free. The games go off without incident, nobody trips and runs to mother or father with a sniffly nose. It's simple, but still not easy. The kids are running non-stop. I see jackets flung off, faces become red and sweaty, and now and again one will stop and pause, hands on knees, to catch their breath. Physical work, good and pure. But another level, they are developing skills of what I call, for lack of a better word, layering. They are physically moving with a game, whilst keeping an eye out for the others and planning strategies, sometimes in a group, sometimes on their own. They are watching to see who is doing what, and beginning to really suss out what sort of behaviours will move them up a level on the playing field. Like birds in flight, they seem to sense when to move together and when to separate, and this takes a lot of energy and an awareness of self and others that is emerging.

But then, when conflict strikes, they are learning how to negotiate, how to lead and follow, how to speak to others, how to resolve the conflict (for most of the time parents are involved in their own conversations) and most to listen. I've seen some major arguments erupt, and one or two of the kids step in to "manage" it. I've seen kids run off so angry they can't speak anymore, and the others coming together to figure out what to do. When an interaction or game goes so bad that two or more have fallen out, the others are left to decide how to react, and you can see on their faces the intense work of processing that is taking place. Will I take sides? Will I find a new game? Will I ask to go home? (maybe not...) Well then, will I help sort it out?

Every day Caleb comes home and tells of arguments, fall-outs, and kids that are calling names. Sometimes he is on the receiving end, and sometimes he is part of the team doing the dirty work. He is learning how it all feels, what sort of consequences come and how to deal with them. He is learning to stand on his own feet and make decisions--some good, some not so good--and most of all to learn that knowing why he made them is just as important if not more.

But I think what is most difficult, and potentially what throws some children off the rails for good, is that their safe spaces are changing and they have to learn how to realign themselves in this adult world to which they are stepping ever closer. I can no longer keep Caleb safe at all times, or control most aspects of his world, or solve his problems. He came running to me today with tears at an injustice done to him by his best friend, which was of course provoked by the injustice he first did to said friend. What could I do? A bit of comfort and comfort for the other boy who then came over. Some words that I hoped were calm and encouraging, and a joke about everyone "smelling the barn" and being tired and cranky at the end of the week. Nothing more, and they were friends again. But that was not my doing, it was their decision, weighed up in milliseconds about how they wanted to end their week and treat their friendship, about what matters and the importance of forgiveness that they have heard over and over again.

Processing, processing. If we think that it's only we adults who do the enormous work of processing difficult issues and straining our minds on so many different levels at once we are kidding ourselves. If, in turn, kids act "like kids" sometimes, I can see why: everyone needs a break now and again in their work day.

Wednesday, January 1, 2014

Happy New Year!!

A very warm welcome to 2014 from the Brock family to you!

This has been a good year: not the best of years, but to be honest I don't know if I even have one of those or not! It certainly was a decent notch above 2011 and 2012, and that's all we can ask for around here.

I had a look back at some photos tonight to remind myself of the highlights upon which to reflect. These included several trips and events for my (Steph's) work, like visits to both Shetland and Orkney and various fun days across the Diocese. There were a couple of school events for both Caleb and Adam including Sports Day at the Sports Village (Caleb) and a 10th birthday party at Woodlands for Adam. Also noteworthy of course were Caleb and Agnes' birthday parties, and a visit (two in fact!) from Oma and Opa from California. Oh, and in June we got chickens!! Yes, three hens we call "the ladies", Tilda, Foxy and Ben (the hen). They are fun, they are productive, and so far have survived the weather and the neighbourhood fox so here's hoping for another year to come!

We had parties, we had walks and play sessions out back, we had some crazy weather that Adam and I tried our best to record. But the three most memorable events of 2013 had to be, in order of amaze-balls-ness:

Number 1...Adam finishing chemotherapy for his Leukaemia on 09 October 2013, after two years and four months of treatment. Needless to say we celebrated and ate our fair share of cake!

Adam taking centre stage at his celebration at St John's (our church in Aberdeen)

Number 2...our trip to Germany in August, the first family holiday in all of Agnes's life and our best one ever!      

Three smiling little faces, at the New Botanical Garden in Tubingen

And number 3...finishing the work on our house which has left us with space to entertain, to eat together, to run about, to lounge ''upstairs" and to look to a future which includes friends and family around often.

Opening Christmas presents, with a view to the kitchen.

And a few more recent photos to send out 2013 in style...

The family on Christmas Day in front of the tree at St John's

Post-Nippy Dipper in Aberdeen on Boxing Day, with stalwart friends and brave dipping colleagues Sarah, Joy and Helen

Family Boxing Day walk to our favourite hill overlooking skies and sunshine!!

All in all it's been good, and we look forward to a new year of increased health and a return to normal immune functioning for Adam, we look forward to a short trip during Brian's sabbatical this spring, we look forward to 3, and 8 and 11...all good years for children I'm told! And finally, we look forward to more time with friends, more energy to pursue the things for which we were created, and more laughter and love to share around as we are able.

I hope and pray the same for you and yours, and hope sincerely that 2014 brings us into contact with friends near and far. We now have space for you if you come to the great North East of Scotland!

Happy New Year to you all, and God's blessings on you and yours.

Wednesday, October 9, 2013

844 Days

Today is a momentous day. It is officially the last day of Adam's treatment for Acute Lymphoblastic Leukemia, and crowns the other 843 days since his diagnosis on 18 June 2011. He was just seven when he was diagnosed, and his sister was three months old. Now he is 10, and his sister spent the morning bringing me cups of "tea" from the playroom. Time changes and goes on, regardless of how much we are unable to comprehend or imagine it doing so. In particular, two years and four months goes on!!

When Adam was diagnosed I could not believe he had cancer in his bone marrow, the very centre of his physical being, and we couldn't see it. Now he's done and the question I often get asked is "is he cured?" That's easy to answer for a slab of pork, not so for a person. But for all intents and purposes he's in remission, and provided we stay away from a relapse for another 2 1/2 years he will be declared cured. This is Adam of course, and given his history there will no doubt be other issues we have to deal with, but hopefully ALL will not be among them.

I don't say this lightly though, as there are so many for whom it's not such an easy road, or a clear ending. I think so often of those we know who continue to battle cancer and/or have lost someone to it. It's become a personal thing to our family, and we will continue to pray for each and every one of them.

And though this might end up sounding like an Oscar's speech, I would be horribly short-sighted if I didn't say that we had a lot of help along the way, and would not have made it alone. Obviously the docs and nurses at the children's hospital are amazing, and my tears today with Adam's consultant are a testimony that they have done for us what we never could have done ourselves. They gave us back our boy. The pharmacist, the play staff, even Gary Seagraves the magician who I saw in the lobby all played a part in keeping us afloat! Our friends, the ones we met in hospital and all those who supported us from near and far--thank you for your care, for visits, gifts of food, and for faithfully asking "how is Adam?" Our families, who are waiting as I write for word of his results (which I don't have yet, but all signs point to Adam's blood being clear), they have flown thousands of miles to be with us and give us rest and physical help. Family is a good thing, and we are so grateful to all of ours for being our strength. Adam's school and teachers have been amazing, and always willing to put up with a barfy-post-lumbar-puncture boy, a hyped-up-steroidal-boy, and a grumpy-tired-chemo-ridden boy. The charities who have helped us, CHAS, Archway, ARCHIE, Clic Sargent, etc. It's good to know when a charity goes the extra mile and they all do. Finally, our churches, both St Andrew's and St John's, have given us tremendous and crucial spiritual support. Thank you for surrounding us when we needed it.

What I'm saying is that now that we are at an end of one stage, and have taken so much and needed so much, it's good to turn our minds outward again. It's good to join the normal world again, and I couldn't properly do that without recognising the full picture of what has been. So thanks for allowing me that closure!

Going forward, there will still be monthly clinic visits for a year, and six-weekly for another year, and then two-monthly, then we are not exactly cut loose yet. But today, all that remains is a large ice-cream sundae for the kids, all three of whom have put up with SO much for the last 844 days. They are truly my little stars! And a bottle of bubbly tonight for us (and anyone who cares to join!!) Really I don't need any excuse to celebrate, but if I did this is a pretty damn good one indeed.

Monday, September 2, 2013

A wee update (literally)

This is such an epic time in our lives that I thought a blog update was in order.

We are now 10 days in to toilet training with Adam, who is doing wonderfully at his newly acquired skills. In fact, today he got FOUR stickers on his potty chart, that's FOUR times he used the toilet, and NO misses. He even went at school today for the first time, though he did hold it until 2:40pm!! The man has some control, and now we are finally getting somewhere with learning to let loose at the right time.

I know this is probably just a good day in yet a long and arduous road. But we really need this encouragement right now. And it's only 8 days until his last chemotherapy infusion at the hospital too, so we're almost ready to start breathing again. I think he'll know when chemo is over, the same way he knows when he's gone in the potty and feels good. It will be a wonderful gift to Adam and ourselves to be free and learn to be normal again.

Thursday, August 29, 2013

Holiday madness (or lack thereof)

A belated note about our first Brock family holiday in many years, to the lovely country of Germany, the town of Tuebingen, staying at the home of our dear friends the Wendte family.

We arrived to 35 degree heat, which is more than we ever get in Aberdeen, though to be fair the summer in Aberdeen this year was stellar: warm, dry and beautiful. We stayed at a hotel right next to the city swimming pool and entertained ourselves aquatically for a couple of days, meeting up with our friends in the evening. Then they left for their holiday and ours, staying in their home, began.

We had two weeks to rest, ride bikes, eat ice cream, peruse bookshops, play on different playgrounds, swim, drink iced coffee, ride some more, eat some more, swim some get the picture!

Here are some of the highlights:

 Lunch at an open air cafe after our first proper thunder-and-lightning storm in years!

 One of the bookshop-enthusiast high points

 This is how we rolled: "The Mothership", Caleb on his own and Dad & Agnes

 The best pic of the kids the new botanical garden

Again at the botanical gardens...a great morning out

 Swinging German style: old tyres at the old botanical gardens 

 Wow, this stuff is cool! Agnes enjoying one of her many swims at the pool

 A view from the top: At the "Wurmlinger Kappelle" having a picnic

 Yikes!! Caleb after his first proper bike crash (everyone and everything largely intact)

 "Fishing" in the local creek on a "cool" day

Family paddle boat outing!

 Family picture at the Schloss (castle) overlooking the town

 Agnes perfecting her jumping skills

 One of the best playgrounds ever!!

That was a fun slide!!

So yes, a great summer, a great holiday and it's great to be back in the routine again now. Hope you enjoyed the pictures!