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.

Friday, November 25, 2011

Thanksgiving retrospect

I fully intended to do a post last night but got waylaid. I thought that maybe the moment had gone, but did not want to be ungrateful, or for anyone to think that I've lived in Britain long enough to not care about turkeys and such anymore. Actually, to be honest, the latter might just be true...our "Thanksgiving Dinner" consisted of leftover roasted vegetable enchiladas from Agnes' baptism lunch, a creamy Brussels sprout and Romanesco dish and peas. I did make a pumpkin pie for dessert, but I made it out of sweet potatoes--my favourite fake of all time! :) I was actually quite pleased with myself that no animal had to die for my family last night. Call me sentimental, but I guess I don't always see the point, especially when roasted carrots taste so yummy. That, and my oven is too small to host a turkey!

So, I spent the day in what I consider a very appropriate manner for the occasion: I went to be pampered at a spa day for mothers whose children have been recently diagnosed with cancer, paid for by some businessmen of Aberdeen who donated money to Clic Sergeant (a children's cancer charity who also pay for the nurses who keep an eye on Adam at home).

The pampering, I was very thankful for that! The rich businessmen, very thankful for their generosity. And the other mothers: very thankful for their stories that helped put ours into perspective. Adam is doing really well when I place his journey next to some of the other kids' journeys. Many have spent months, yes months, in isolation. Many have been extremely sick during chemotherapy. Many have not been able to go to school. Many mothers are still struggling with the diagnosis a year on and worry every day about relapse. Many are also finished and we still have a long, long way to go.

I'm not saying I don't struggle, or worry though. Last night the reason I didn't post is because Adam spiked a temperature and I found myself too distracted to concentrate. Would we have to take him in? Should we go now, at 8pm, or wait for 2am when he spiked again? Does it count that they told us to call when it reached 38.5 and it was 38.4? In the end we put him to bed and his fever broke and he was fine all night, but I don't know if I'll ever get used to the feeling of impending doom all the time. I was also thankful, meeting the other mums, to see that I'm not the only one, and also to see that life goes on and it is still possible to have a nice lunch and massage and "forget" for a while.

But let me not forget to say Happy Thanksgiving all. Enjoy the blessings of whatever you have--health, wealth, physical strength to help others, the chance to listen to or comfort someone, children, a soft pillow, laughter,'s all part of the journey.

Thursday, November 17, 2011

Adam on wheels

I could not let one more minute go by without sharing the good news: Adam now has a bike!!

The charity Cyclists Fighting Cancer have graciously given Adam a specialised trailer bike, complete with harness so that he doesn't run away (or fall out when Mom accidentally hits a dip and spills him over! More on that later--he was ok, by the way!)

It's amazing, and yet another part of the silver lining around the clouds that have hovered the last few months. Adam was thrilled, clapping all the way home as cars dashed around us and mom rode slowly along, terrified! I can't believe we can all actually ride together now--will take a bit more work before this learner is used to the weight distribution of the trailer, but the look on Adam's face last night was and will be worth it all.

Pics to come when we ride again--in daylight this time!!

p.s. For those of you who have asked what you can do to help and are still hoping for a chance, here is one option: you can always donate to those charities that have helped us, and CFC is one of them. The bike they donated is easily worth £500. AND you can also keep kicking my butt to fundraise for them one day, when time and energy and treatment regimes permit. You choose :)

Monday, November 14, 2011


Just wanted to say that we are officially on the mend from dose number four: six days in and Adam's numbers are starting to go the right way again. This one has been the hardest, with his mouth and the skin on his bottom the hardest hit. We rapidly assembled a host of salt water, bicarb, gels, foam spray, creams, lotions and special pain relief of the opiate variety to treat Adam's pain, and it seems to have helped him get through. Not much hope that dose number 5 won't send him over the edge again, but at least we are prepared and at least that's the last one.

Now let me brag for a minute: the doctor today said once again that they are impressed with how well Adam has been doing, and with how much he's taken during this course. Adam has been able to tolerate more doses so far than many children do, even those without Down Syndrome.

So there: if you're going to have an extra chromosome, you might as well have it made from steel.

Thursday, November 10, 2011

Safety net

I have a lot to do: this is a fact of my every waking moment (and my sleeping ones too, though I'm less aware of it then). However, there are some things that deserve a rant no matter how busy one is, and this is one of them. Stop reading now if you don't want to "get involved."

As a parent--as a mother--of a child with Down Syndrome, it behooves me to point out that a new prenatal test is being released soon that will make testing an unborn child for Trisomy 21 safer, more reliable and available earlier. This is not good news, obviously, especially for those of us who love one of "these children" and all those who might have had the chance to discover the adventure for themselves.

I'm not going to point fingers at anyone who gets prenatal testing, that's not my intention. It just grieves me that it's so commonplace now that we have become immune to what it is we are doing when we let a doctor take a sample of blood and look for "abnormalities." I do, however, want to point out one very obvious fact that I think gets left out of most discussions, at least among plebes like me, and that is the issue of who profits from the test.

When a mother gets this "MaterniT21" test, as it's being called (for one full article on the subject read here), no matter what the diagnosis is, who profits? Full marks if you said the company that produced the test, i.e. Sequenom.

We may think that it's the woman, or the couple, or their family who "profit", but the fact is that Sequenom want you to take their test, they want your money and they don't give a damn what the result is for you. This is evidenced by the fact that they don't put one red cent into developing education or training materials for those who perform or take this test. There is no moral dilemma for them, this is not a child's life in limbo, or a family's journey, it is simply a few billion dollars they stand to make if people buy the jargon of "safety" and get the test.

Here is another fact, just as unappealing to many people: there is no such thing as safety. You can have all the tests in the world and your child is still unknown until he or she is born. There is no test to see what their grades will be, if they will be predisposed to stealing (or worse). If they will have friends or finish school or end up on the streets. You can never know, you just have to live with and love the people you've been given, and you get to find out along the way how blessed you have been.

Sorry for the rant, but I have to speak out. If not for myself, then for one of "those children"-- and two others who learn, in part by my example, what it means to walk beside him every day. I know Adam, and all my children, not from tests but by asking the one who made them to help me know them.

It is not easy, but it is surprisingly very safe.

Wednesday, November 9, 2011

Ground Zero

Well, we are officially on our own again: California Oma left this morning to return to her home, and I drove home slowly with what I'm sure were glazed, panic-stricken eyes!

It's not so bad, and while we are TOTALLY grateful for the help she gave us for THREE months, I always knew I would need to pull up my bootstraps and get back to flying solo. I kind of hoped that time would go a little slower, but on the bright side three months of Adam's treatment have whizzed by, and we only have just under three months left before the maintenance phase.

I was actually quite proud of myself at dinner, and commented to Brian that we had "made it" fine. He reminded me that we haven't actually done a whole day yet. Always the realist, that boy!

Here's to the baby remembering what sleeping at night is, to Adam's mouth being zero tomorrow (on the scale of mouth damage, 0 being none and 4 being where we don't want to go), and Caleb keeping to the "not before seven dot dot oh oh" rule. Peace, love, mercies small and large and enough caffeine to keep the ship sailing.

Tuesday, November 8, 2011


I have to apologise...I may have been misleading in that last short post. I do not mean to mislead my dear faithful readers, so let me tell you the story:

Many of you know that Adam's favourite TV character is Mr Tumble, aka Justin Fletcher. Justin is a man kind enough to write back to fans when they send a message on facebook, and also kind enough to give the address to which said fans should write when they want to request a visit. I wrote and did not hear back, so wrote again and included my phone number. I then received a call from a woman at the Make-a-Wish Foundation asking for Adam's details so they can begin to organise a trip for him to meet Mr Tumble (Justin) in Surrey, England, sometime. This all happened because Justin called her and asked for her to pursue it.

He (Justin) then had a bunch of Mr Tumble stuff--magazines with fun activities and stickers (Adam LOVES stickers!), DVD's, cards and a picture of himself, much of which was signed by Justin/Mr Tumble--sent to our house, and all this arrived last Tuesday. Needless to say I was amazed and grateful a second whole time, so I tried to get a picture to send to Mr Tumble to say "thanks". It was not a great shot as Adam was really grumpy that day (and who can blame him I ask?), but the result is what you saw in the last post. I think he looks solemnly pleased :)

At any rate, things continue here on a fairly even keel. Adam received his 4th dose today, and we should be seeing the effects of that in a few days, by Saturday at the latest. The doctors are amazed that he has come this far in this particular part of the treatment. He's been enjoying school and his bus rides to and from, though he is still refusing to keep a hat on in our late-Autumn dropping temps. The man is tough, I tell you!

I went to Caleb's parent-teacher conference this evening and his teacher had nothing but good things to say about him, his conduct in the class and the speed with which he is picking up language and maths. I do think he might have my brain for math, but also his daddy's brain for concepts and liking to know how things work. It's a winning combination and a sweet boy to hold it all together.

The baby, well she is practicing her standing up and her new "Ab. Ad. Ab. Ab. Ad." during the day AND the night just now, enjoying several opportunities to call me in and politely ask to be laid down again. "Ab. Ad." It's sweet, and wonderful to see her come on so much and enjoy a little rough play and new foods and the attention of strangers everywhere she goes. If you are in Aberdeen and walk past the Starbucks at Marischal college and see a gorgeous little pink puff lady in the window, it's probably Agnes! :)

That's all for now. It is, as usual, bed time for this mama.

Thursday, November 3, 2011

Mr Tumble made my day!

Thanks Mr Tumble (Justin) for bringing some light to a hard week!