another post-holiday update

Well, it's been a good couple of weeks with lots of news to report.

The October holidays were a success, not least because of the company and help of my mom who is still here (until Nov 9). We had good weather, good enough to get out and walk a lot. The second week Caleb had football camp, which he enjoyed but was equally keen to finish. Hmmm, may not be a star footballer this boy, we'll have to find something else that catches his attention! Adam and I walked nearly every time to take and pick brother up...it's a good half mile to the Sports centre, so I would guess Adam walked in excess of 5 or 6 miles last week. Pretty good for a cancer patient, right?

Speaking of which, the doctors and nurses are amazed at Adam's progress, and particularly the way he's sailing through this current round of chemo. He's had minor (comparatively speaking) mouth trouble for a few days after each of his treatments, but nothing like what they were expecting. I am so proud of him--the energy that both his brother and sister display in their constant movements, acrobatics, exploration and attention to the world around them is mirrored in Adam through his being able to take a full whack of chemo, turn around and say thank you, go to school, come home and eat, sleep well, and do it all again the next day. I know it's only a matter of time until the bubble bursts, but for now we are glad.

The only shadow is the fact that once again Adam didn't "make the cut" on the last MRD test. His result was just slightly higher than the cut-off for continuing as is or pursuing more aggressive treatment, i.e. a bone marrow transplant. As always, Adam is a grey area for the doctors, but our consultant is wonderful and called several of her colleagues to confer. The answer they all gave was "continue with the treatment he's on for now", much to our relief. They feel that this gives Adam the best chances of survival and cure. The way Adam has been going I am beginning to feel that they might be right.

This last sentence of course reveals the fact that I've had my doubts, and who wouldn't if they are being honest? It's so weird to live at the edge of life, to walk a narrow ledge over a deep precipice with your son and know that at the end of the day you will either fall in or stay standing. It's one or the other, and at the beginning I was sure Adam wasn't going to have the strength to handle the treatment. Now, watching him take a blow and heal up and keep going, I'm feeling my hope grow each day that he might just do it. Seeing the docs perplexed at his good response makes my heart swell, and no matter what I'm so happy that he's coped this well so far and been able to go to school and live a (mostly) normal life.

Ok, final news: After two letters to Justin Fletcher, aka Mr Tumble, asking him to come to Aberdeen to meet Adam and his friends, I had a response. Yesterday a woman called from the Make a Wish Foundation asking if Adam would like to come to Surrey and meet Mr Tumble in person!! It seems that Justin called her and asked her to contact me, and said it would be best for the meeting to happen through these channels. WOW!! So now we wait and see how the logistics lay out, and hope that Adam is well enough when the time comes to make the trip. It would be so amazing, and I'm so grateful for the glimmer of hope that Adam might one day finally get to meet his muse. Thanks Justin--thanks Mr Tumble!!! :)

Holidays again

One begins to wonder when the Brits get any work done for all the holidays they have!! Here we are again, that time of year when the potatoes used to get picked by school children, so they would be given two weeks off in October for the "Tattie Holidays". Trouble is that now school children just hang around the house with nothing to do for two weeks in terrible weather, so the Tattie holidays only succeed in messing up our lives. Can you tell I am not fond of this time of year?

At any rate, the boys and I have plowed into our two week purgatory with high hopes, taking walks, eating hamburgers, and trying to get some things done now and again with our days "off". Adam is not in a happy-to-stay-at-home phase so we're forced out a lot, and the rain the last two days has not helped. But we are nearing the end of our first week and still smiling. A little.

Honestly, holidays are the most psychologically depressing time for me. They are the days and weeks when I really see and feel just how different Adam is from other children, and how much is not available to us that others have at their disposal. Quite honestly, I get very jealous. I see other friends who stay at home and watch movies with their children on rainy days, or bake cookies, or paint pictures, or read stories. I see Caleb who would love to do all that, and then I see Adam who would start throwing things out the utility room window (like my courgettes!) and break all the paintbrushes, etc. I see the gap that lies between the life I would like to lead and the life that is mine, and it's all I can do to pray that the Lord would grant me a little bit of hope, that He would grant Adam a little bit more development, that He would grant us all a little bit more patience and humour with each other.

It's not easy, and I often struggle to find the balance between leaving enough space for us to experience each other and planning so much that the house of cards crumbles. Today I lost the plot because I had forgotten one thing that led to the collapse of another thing. And stress, and rushing around. All totally not helpful to someone who is wanting to learn to just be. I do pray every night that I would be forgiven for my terrible behaviour of the day, and be loving and gentle toward my children the next day. But I pray that every night. So maybe either what I'm praying for is not quite right, or my standards are too high? I actually did think today, "you know what? Tomorrow I'm going to shout at the boys at least once, just like I do every day. So let's pray for something else tonight, ok?" Maybe that something else would be the ability to accept the gifts that are right in front of me, instead of wishing for those that I think would be better. I'll let you know how that one goes.

Another end, another beginning

This is it, the last day of summer holidays. What a full and fun summer we have had--it almost seems too quick that the boys are starting school and nursery again tomorrow, the end of the lazy days routine and beginning of discipline, school uniforms, packed lunches and book bags. And yet it is time, as Adam has been bouncing around like a wild man for the last two days, creating all sorts of trouble (but don't tell his teachers!!) He's starting Primary 3, and time will tell if it's a good fit or not, but I know without a doubt that he'll be so glad to see the taxi in the morning and his teachers' smiling faces in the classroom. Oh, how I wish he could tell me about it with his own words when he gets home! Maybe some day...at any rate, it's a good job we're through with jet lag and back to normal, as Adam's taxi is coming at 8:15am!! I had a dream last night that the taxi came and his bag wasn't packed yet, so I made sure to do that this evening. We're ready--bring it on!

By the way...I seem to be comfortable with telling more people now--and word gets around quickly in these parts--so it seems safe to write it out here: We are expecting our third child in March! If you have seen me in the last few weeks it might not have been difficult to surmise--the green look on my face, sitting down every five seconds (me who usually runs around all day!), refusing to even smell food at most meals..."morning" sickness is a total joke: this has been 24/7 sickness for sure! This kid (a girl by everyone's reckoning, but we'll see in 6 months) has got me beat, but I am often and gently reminded that this is a blessing and we are indeed very excited. I have unfortunately lost enough weight in these last few weeks that having a huge bump seems a distant possibility, but I am ever hopeful and there are many weeks left (29 to be exact!)

We'll be sure to keep you posted!

And then it was over

I thought I would write some when we were in Texas, but alas, we were too busy...having fun, talking, hanging on the porch enjoying the faintest breeze, watching kids race each other and splashing in the pool, eating, talking, posing for pictures, sharing snow cones on a hot afternoon, hoping for thunderstorms (that never came), talking, and so much more (talking!). No wonder sitting on the computer never even crossed my mind!!

I have to say that was a great vacation--10 days in Orlando, 3 days driving across four states to arrive in Texas for another 8 days. It was so good I can even say it emphatically after we have returned to our normal life once again. Thank you family and friends, for giving us a great gift of life, warmth (not just the heat!), fun, conversation and memories to get us through another year in Aberdeen. We love you all!

Speaking of our return, it was a wonderful trip and we are glad to be home. Caleb has already said twice today: "I can't believe we are home." I think maybe he's as delirious as the rest of us from lack of sleep, but he's right--seems like we've been away forever this time, though nothing really has changed. I asked the taxi driver if there had been any exciting events in the last three weeks. Nope. Oh well--one very exciting event restricted solely to the garden allotments on Powis Crescent is MY garden--it's huge!! I can't believe the size of the pumpkin plants, all 5 of them! We have enough lettuce to be vegetarians for life, beautiful flowering poppies, parsley that's taller than I am, carrots and strawberries out of control. Again, another gift, especially since gracious others did the watering for the last three weeks (and apparently God watered for us a few times too!)

The flight back was fine too, and again I have to say that the boys amaze me with their flexibility and tolerance of travelling. They were wonderful, and even slept for 2 solid hours on the plane. We had not even one minute of delay, no trouble with customs, and no lost baggage. Again, grateful.

And now, tired. See you all again when I can see straight!

Dreams Come True

As I write this, it is 10:25pm and 81 degrees outside. Feels positively cool...I had a lovely walk this evening at sunset, taking a detour every other house through the sprinklers that people had on to water their lawns. I was grateful that some people had been a bit overzealous and were watering the road (and me) too! Apparently it will be a record high in Orlando tomorrow, as in 96 degrees. I will let you know how that works out for us, but I can already say there will be a lot of swimming done! After that we are in for a few days of thundershowers which I am already looking forward to.

Today we pottered around Orlando and saw a re-creation of an old town in downtown Kissimee. It was fun, but hot in the middle of the afternoon. We took the kids on some rides and looked in the shops. Funny thing was, I popped into a Shoe City to look for replacement sandals for Adam, whose high quality Asda sandals broke earlier today, and found that the proprietor is from Edinburgh! We had a nice chat for a few minutes--made me think about spending the next 20 years in Aberdeen like he's spent the last 20 years in Orlando!

Yesterday we went to Disney's Animal Kingdom, our first big expedition for the whole family (minus Brian, who will join us on Saturday--roll on Saturday!) As you drive into the grounds there is a massive sign overhead that says "Where Dreams Come True". I have to admit wondering internally exactly what dreams I might be expected to have, and the only one I could come up with is that we wouldn't melt and I would be able to handle Adam well. In that sense, my dreams came true and we had a lovely day, including mango shakes, a Nemo musical, lots of animals to see and a Wild Safari Ride complete with elephants and a lion. Personally, I was glad that lions only hunt at night!

One thing to note is that I obtained a disabled guest pass for Adam for the day, which basically meant a red tag to put on the stroller we rented (for 31 dollars, yikes!). This tag allowed us to bypass the regular queues for rides and go straight to the front, which really came in handy at the safari ride. But one thing I found peculiar is that in the shows, the disabled seating was at the back, so far back that I had trouble seeing, let alone Adam who doesn't focus on anything more than 10 feet in front of him. I was particularly interested in a blind girl who was sat next to us, wondering how Mr Disney can justify putting her as far away from the show as possible. Maybe he would say it's a Small World? Anyway, I'll be curious to see what the Magic Kingdom will be like, but I already know Adam is a pro and will be a fun companion no matter what, along with his brother and the rest of this motley crew.

See you soon!

Sticky Monday

I've got quite a bit to catch up on, so this probably won't be the most clear and concise blog post. Then again, the busy and rambling nature of life with kids might better be represented by a rambling narrative of that life, so here goes.

First of all, last week was great and marked by Adam's participation in his first ever sports camp. I say "camp", but actually it was just two hours every day of sporting activities at a local gym with a few other kids with special needs and some lovely coaches. I like the environment, because no matter what Adam gets up to, they never seem flustered. If they have to chase him around, it's fine. If they have to pick up his shoes from the far corners of the gym, that's fine too. Even when he escapes every five minutes, they just go running after him with a smile, though they did take to calling him "Houdini", and for good reason! The kid can surely disappear when he wants to!! I wasn't too sad to be spared 10 hours of it! :)

The camp afforded Caleb and I the chance to do some gardening, shopping and resting, all of which we enjoyed. We needed it too, as our holiday was looming large and I needed to get organised. We left yesterday, Sunday morning, and arrived in Orlando, FL at about 2pm. That's when it all started to get HOT.

Heading to Aberdeen airport we all needed sweaters, as it was only 55 degrees outside. All the flight details and transitions went really smooth and we had absolutely no trouble traveling at all. Let me just say that the boys are professional and wonderful travellers. They didn't give me any trouble, and were so patient as we waited in this queue and that queue. The first flight was only 45 minutes, and we didn't do much apart from sit. We stopped off in Manchester airport, but didn't have time to see or do much as getting from one place to another took most of our time. Then we got on the "Big One": the Virgin jumbo jet.

This was a very full plane, but we were comfortable in our little row of three seats, tucked in by the galley. The first meal was a bit of a wash, especially as I wasn't feeling much like eating, but we did manage to piece together enough to make the hunger go away. Then the movies started, so Adam and I said bye-bye to brother! Actually, Adam wasn't interested in listening at all, but he did watch some people dancing and I watched a bit of Shutter Island.

After a while we all had a bit of a doze, which made us feel so much better. Then, before I knew it we were touching down in Orlando and eventually meeting Oma and Opa at the airport. They took us in their car to a grocery store and then to the house we are staying at, where we met up with Aunt Diana and Uncle Brian, and cousins Micah and Kaitlyn. We all had a very nice swim in the pool, a good dinner, and went to bed early.

Other than a few blips at 2am and then again at 5:30, we slept from 8pm to 7:30am this morning, much better than I had expected. Then we headed to the park, where I noticed two things. First, it's hot. The hottest point of the day is about 5pm here, so at 11am it's not yet reached the peak, but 90 degrees was still feeling pretty warm. And sticky. But we love it! We won't complain since it's the only proper heat we'll get for a long time yet.

The second thing I noticed is that hornets' nest in the playpark we had gone to, but only after Caleb inadvertently stepped in it and got stung four times by hornets. Nasty little buggers. He cried so hard for a while and then settled, but even now he still says "Mommy, my stings hurt." Poor sweet boy. Well, at least now we've got that out of the way, hopefully it's all fun from here.

Summer Holidays: Day One

I have set myself a goal this holidays, and hopefully not an overzealous or irrational one: I want to spend 30 minutes each day doing something educational with the boys, both together and separately. This might not seem like a big deal to you, since most moms I know seem to educate their children easily with each natural breath they take in any given day. I, however, was not born to teach, and find that my creativity is somewhere just below ground level in this area. Also, when you add in the fact that Adam's needs mean he is resistant at best, completely crazy at worst, I tend to give up quick.

That's why I figure that 30 minutes a day, hopefully just after breakfast, is a small enough goal to be manageable. We shall see who manages in the end, and since it's only been day one I will hold off from giving my opinion just now.

This morning we did singing. At least, Adam and I did singing. Caleb and I told stories. We'll call it a verbal foundation for learning, shall we? But now that I know Adam can count we'll work on that some days, and on beginning to write his name...luckily for both of us half his name is the same letter. I'm not being flippant: I know the immensity of the task before us, and it's best to appreciate all the positives that we can! Caleb has mastered the letters in his first name, though they come in all sorts of different variants and I have yet to see them written in the right order! So we all have something to work on.

After "school" we went to the park with Auntie Meg and the boys played while the mums chatted, which was a very nice gift. Then we met up with Daddy and had a lovely walk to the top of a nearby hill. We hid in a thorny bush when the rain came, and threw rocks and found sticks. Adam walked all the way to the top and back down, and had some raisins for his snack in the middle.

Wait, did you read that right? He ate raisins for a snack. Out of my hand. This is another wonderful first for Adam, who up to now would not take food out of my hand readily and certainly not dried fruit. I could hear the sound of doors opening as he ate each one--really, it is a wonder that we ever appreciate the small miracles of life, isn't it?

Another small miracle today was a workshop I went to this evening on Rhythms of Grace, a church service for children with disabilities started by a wonderful priest named Audrey Scanlan in Connecticut. She talked us through what she does, how she does it, and why she does it, and even included some Play-Doh exercises for us to do! The people who came were from all different corners of Aberdeen--it was again an event with a sense of excitement for what the future might hold for Aberdeen in terms of what churches are doing for children with special needs and their families. I am pleased to be working in this field as well, and look forward to taking Audrey's message further in the near future.

That's all for now--night!

Some more holiday reflections

It's Sunday evening, the last day of Easter holidays. Tomorrow the boys return to school and life returns to "normal". I have to say that I'll miss them and the lovely holiday anti-routine we've enjoyed. It's been a new era for us in so many ways, and I am reluctant to let that slip away. But I know that over the next few weeks the momentum we built will grow and the boys will continue to develop. And hopefully I won't drag my feet toward the next school holidays, but leap with joy and thanksgiving straight into them.

We went to visit good friends last week who live in Buxton, England. This is a lovely part of the country where people say things like "Love" and have the greatest accent. Brian and I used to stay at a B&B in the area long before we had kids, and visiting with our boys felt like looking back on two other people we once knew long ago. We visited the grounds (and fantastic playground) of a stately home called Chatsworth and saw chickens, piglets, horses and goats. We also visited a place called Blaize Farm and enjoyed their award-winning ice cream. We walked every day to the city's Pavilion Gardens and let the kids slide on the Bouncy Slide. Sandra and Derek cooked us some great food, and we had time to chat and catch up on life. Now and again we had to quell a few fires amongst the kids (and patched up the occasional finger caught in the door!) but overall it was a great week.

One of the things I can count on when we travel someplace is that Adam will be unpredictable in his reactions and behaviour. This was just as true for Buxton as anyplace, though I have to say the end result did not leave me in tears this time. We even slept all together in one room and survived. It was actually nice to get a sense of each others' rhythms, which I think we miss out on when we always sleep in separate rooms. I learned that Caleb talks in his sleep, and that Adam still snores (though quieter)! I learned that proximity no longer equals disaster, and that gives us hope that this summer we might be able to do something crazy like rent an RV and travel together. This is also possible because even spending 18 hours in the car with the boys to and from Buxton was great fun. Not once did I wonder in my head "how much longer is this going to take?!" And this without the DVD player I really thought we'd need!

One of the highlights of the trip was at Blaize Farm in the sheep barn. They had a lamb pen, and several lambs out for the kids to pet. Brian sat in between our two and the son of our friends. Adam petted a lamb for a minute, but then became too rough with it and Brian took it away. He stayed seated with the group, though, and a few seconds later belted out the loudest "BAAAH!" you've ever heard. It was priceless. Yes Adam, these are sheep!

And the holidays ended in a blaze of warm, sunny, blue sky glory after beginning in snow and sleet. What better start to spring could you ask for?