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