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!

My Agnes

My sweet little Agnes, a ray of sunshine into my very heart--here are a few pics of your absolute precious-ness--I love you!

pensive in the sunlight...

look at me CHOPPERS!

And now for my first attempt at croquet...

Daffodils always make me swoon...

Is it time for school yet?

This is just a week in the life...what a life it is!

Helping hands

We have had Uncle David here for a week now and have thoroughly enjoyed the change in dynamics that his presence brings, along with the gifts he has shared with us. So far he has been Chief Dishwasher, has developed skills in bottle-making and baby-feeding, has filled our front room with the sound of the mandolin and is at this very moment involved in putting together a sideboard that I ordered for the kitchen. That, and enjoying what Aberdeen has to offer, both weird and wonderful, and much more.

Here is a picture of some little hands helping Uncle David to do his work...

Apparently, she is very handy with a screwdriver!

Catch-up (part three)

Another instalment, and this time we have arrived at Agnes' first birthday.

I can't believe my baby girl turned one last Tuesday the 6th--a whole year has blown by so fast!

She is amazing--fun, happy, adventurous, crazy coordinated, social, smiley, funny and SO beautiful. This year has been anything but easy, but watching her grow and develop has, I think, made some of the more bitter pills easier to swallow for us all. Adam has enjoyed having her around and is learning to play with her, giving her kisses all the time...Caleb loves his sister and can make her laugh so hard and so easily, and loves playing chase around the house...I have been grateful for the grounding in reality that her schedule and needs demand, keeping me focused when I might otherwise have crumbled, enjoying doing things one-handed while holding her and snuggling up at night with her bottle...and Daddy, well...Daddy loves his little girl and that's all there is to say! :)

Here she is contemplating both her cake and those goofy people singing to her--

And here she is sampling the wares..."yum, carrots!"

Part of the evening was sad because Caleb had to be disciplined and thus missed the whole cake and singing part. But, as with all clouds, the silver lining was that Caleb's absence enabled Adam to step forward and play a more central role in helping sister blow out her candle, as you can see from the video:

The funny part was that we were all totally surprised to see Adam actually blow the candle out, he had never done that before! And Agnes cried because we took the cake away--it was such a funny mix of happy and sad, but then all major moments in life really are, aren't they?

That's all for now...more instalments soon I promise!

Decision made!

It's 2am and Adam is sleeping beautifully, I not so much, but that's life for the adult accompaniment to the hospital night shift.

The nurse comes in to give Adam's antibiotic through his port and halfway through it becomes apparent that something is wrong: the fluid is not going into the blood stream like it is supposed to, it is going into the surrounding tissues. Suddenly Adam is jumping all over the bed and we know we have to take the needle out and alert the doctors. Luckily we got to go back to sleep (Adam did) and wait until 8am for our main doctor.

He checked out the port site and said it looked better, try putting a needle in. This time though, it seemed to hurt Adam even though the fluid was going in better. Called the doctor back and without a moment's hesitation he said "Take it out!" The nurse brought the "Nil by mouth" sign (i.e. no eating) just in time to whisk Adam's breakfast out from under our noses. Quick logistical negotiations: a nurse will stay with Adam while I rush back to collect the baby from Daddy who has to rush to teach a class at 9am. This in rush hour traffic in the rain--luckily we live close to the hospital!

Adam finally went in for his op at 12 noon, the same time the baby went to sleep for her nap. I got a moment to eat breakfast/lunch and read the paper before the circus started again. Adam's op was successful--they removed the port and put an IV cannula in his right hand. We are to hold on to this cannula for two days if possible--Adam needs one more dose of chemo tomorrow and two days of IV antibiotics. If the cannula comes out after the chemo, well so be it and that's us done. Even if it stays in we are free to go by Saturday. That's a sweet deal--and even better to know that the one thing causing all the trouble with infection is now out of his body, even though that's also the one thing we need most to continue with his treatment. We'll cross those other bridges later, i.e. do we put another port in or continue with IV access for each monthly chemo treatment? For now, we get through tomorrow and be ever so thankful we have made it to the end of the intensive part of Adam's treatment protocol.

I might add it's pretty hard to not think about "accidentally" dislodging the cannula tomorrow afternoon and oops, I guess we have to go home now! :)

Daddy arrives at 4:30pm and I walk home with a tired baby, who again mercifully sleeps in the buggy while walking. I collect Caleb from the school friend who took him home with her and her three children. We walk home in the rain, each taking turns to console a crying baby who just wants out and fed. We arrive home to find...my house key is on the key ring in Daddy's pocket at the hospital!! Sigh...not the first time today I've thought "Thank GOD for mobile phones!!" :) Daddy to the rescue...dinnerbathandbed in quick succession. A quiet house at 9pm.

This is one for the record books, and, strangely enough, a good day all around.

correction

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.

First day of school

For those who have been following the blog, a little bit of sunshine for once!

Yesterday was Caleb's first day of school, and he looked so handsome in his uniform! Adam too had a joyous return to school this week, another handsome uniform and some beaming smiles to go with it! No matter what happens, it was worth it to see his face when I did the "school" sign.

He is doing really well, and today went to school after his lumbar puncture this morning. Another sign our life has changed: becoming blase about general anaesthesia ("it's only a lumbar puncture today")! The port they put in last week is working beautifully, and healing well. The doctor even said that he can go swimming after the needle comes out! Tomorrow is two doses of chemo after school then a week off. We are so grateful for some normal in our lives, almost don't know what to do with it!!

Agnes is settling in too, learning to sleep better and definitely keen on the whole eating thing!

Here is a pic of the boys, one blond and one fuzzy, both blinded by a sudden patch of light:

The end of Round One

Today is Monday, a mundane enough affair by most people's standards. In Aberdeen it's cold, grey and a wee bit rainy, also pretty mundane for the people who live here. For us, however, it's a fairly momentous day: it marks the last day of Adam's first round of chemotherapy and a rest day.

Yes, you read me right...it's been a rest day. A fairly restful day too, for that matter, especially since the aforementioned weather has limited our choice of activities. To be honest, I've struggled to know what to do with ourselves, as each and almost every day for the last 5 weeks has been oriented around a trip to the hospital for something or other. Not to have to make that trip has left me a bit, well...disoriented. Not that I haven't enjoyed it, and not that I haven't caught up on laundry and cleaning in the free time. Adam watched a bit of his favourite movie Cars, and Caleb had a go at another day of football camp. Agnes...well, she ate, slept and squealed! :)

Tomorrow begins Round Two of chemo, complete with all new drugs, an all new routine and the same old bone marrow aspiration and lumbar puncture to kick it all off. The docs will be doing much the same for the next four weeks as the last five: pounding Adam's body with toxic drugs hoping to kill off even more of the leukaemia cells, watching his blood counts rise and fall, and measuring it all at increments with needles and blood samples.

What has to happen now is up to Adam's body really, and up to the Lord ultimately. The drugs need to kill off as much leukaemia as possible and bring Adam closer to remission, if not all the way. But his body also has to hold up under the strain and this is the slightly more worrying part of the equation. The first round took a toll, evident in the constant slight tremor of his hands, his pasty face, his inability to walk pretty much at all, and his hair that is falling out fast now. We hope and pray that the second round doesn't do worse, though at this point I suspect that's a futile hope. It's all a guessing and waiting game, not exactly my forte but it seems one that I'm destined to practice a lot for the foreseeable future.

We'll keep you posted how the numbers look tomorrow, and if there are any new developments. Adam had a fainting spell over the weekend that we hope not to repeat, though on the plus side he's off the steroids and is finally sleeping better. Now if only I could say the same about his sister....

Resurrection

I've always tried to observe Lent, by taking something on or giving something up. It's a practice I've kept since college days, learned from the church I went to which at that time was called Disciples' Church. Some years were "better" than others, if you can describe it that way. This year was a new experience entirely, one which I am so grateful for and the timing of which can only be considered a gift from God.

Three days before Lent started Agnes Sophia Rose joined our family. That means that by Ash Wednesday we were all properly exhausted and the normal family routine was in tatters. I had thought that this year I would give Lent a miss, mostly because I had had so little time and energy to think about it properly. However, it slowly dawned on me that the reality of our new life, my tiredness and grumpiness and feeling completely out of control in every way--physically, emotionally, mentally--without any reserves at all, this was exactly the meaning of Lent.

If we are to identify with the suffering and sacrifice of Christ, then what better way than to take on the fullness of caring for and giving to a new person? All that Agnes requires, as well as the two other children I've been blessed to have, is the life, love and sustenance that Jesus died to give to us. Every last minute of sleep I've lost and pined for is the sleep He forsook in the garden while He prayed. Every cry I've soothed and not known how to soothe is the cries to Him of us in our sin. Anything I've ever given up is nothing compared to giving your whole life up to such a blessed and yet wholly demanding calling like a new child. And nothing at all compared to giving yourself up for humanity like Jesus.

I have had rare moments to myself, very few showers, only a handful of meals where I wasn't holding a baby or helping a child to eat, scant bursts of anything resembling exercise, late and interrupted nights and countless sentences left unfinished in the last seven weeks. But now as Agnes is growing, settling into a routine and becoming a person before my very eyes, I am so grateful for these weeks of learning to love her and to love giving to her in a way I didn't know before.

Today was a celebration for me of being resurrected from the darkest, loneliest and emptiest places of life. I've been there before--Adam had his heart operation just before Easter seven years ago, and it was on Good Friday that he was at his lowest place and we wondered if he would live at all. It was also that day that we found out he had Down Syndrome, which was placed in perspective alongside the prospect that our beloved son might not live. I know in my head that light comes out of the darkness, that Christ meets us where we are completely bottomed out. But this year was a chance for my heart and soul to learn the same and to see those early weeks of having a new baby not as torture but as the gift they are waiting to become.

Happy Easter.

Flower girl

Couldn't resist--thanks to Beth Levan Lyle for the flower and Jesus for making such a beautiful baby girl to wear it!!

The Holiday Report

They say timing is everything, and that is certainly the case with the last two weeks of our lives, also known as spring break.

When Caleb got up on the Wednesday morning before school got out covered in spots, I knew that we had finally come face to face with the dreaded Chicken Pox. It wasn't as bad as I had expected, but still knocked him down a bit. However, he was well enough by the weekend when Opa joined the party, and our happy seven-some got to spend a few warm days out and about in Aberdeenshire at various parks and cafes. We had a great week, and sadly bade goodbye to Oma and Opa on Saturday at lunchtime, ready to embark on life as a new family of five. We headed first to the park, and then came home for dinner.

At bath time we saw Adam's first spots. It seemed pretty mild, so much so that we all went to church on Sunday morning like usual. By evening, though, his fever had come on and we spent the next two days with the works, watching spots come out like fireflies (see below)

Whew, that was bad. But despite the redness of some of the spots it's been a pretty classic case too, and a trip to the doctor on Thursday morning relieved my worries about infection. He gave us some antiseptic lotion to use and Adam is pretty much over it now. Though midway through a trip to the country with our friends I saw a spot on Agnes, so the poor soul has had to go through the whole thing too! Her case was so mild I wouldn't have known she had it but for the few spots, and she is also over it too. I can't say how grateful I am for the timing of all three kids having the pox over the holidays--I really feel now like we are starting fresh, ready for school tomorrow and bursting with (some!) renewed energy.

We also enjoyed a visit from our lovely friend Andrew Cameron and his son Thomas last week. They were good enough to tolerate our spots, sniffles and general grumpiness, and we all enjoyed some nice outings and good food together. Thomas and Caleb had grand fun playing, and the boys (minus Adam) got to see Urqhuart Castle and Loch Ness on Tuesday. Caleb loved the fact that he stayed up till 10pm, and I loved the walk through the Botanical gardens that Adam and Agnes and I did in the sun and the quiet evening we had together instead.

And now I will head to bed and await my little lamb waking...I tried my first night of sleep training and failed miserably, but it's still early days. Gina Ford, here I come (again)!

The 5 week blur

I can't believe it's been five weeks since Agnes was born!! The time goes so fast, and of course I think I'll be able to sit down and write little bits for the blog here and there, but that would require a minute to actually sit and write!

The long and short of it is that things are good. Little Agnes is growing well and quickly, filling out her first baby sleepers and developing those soft little rolls around the face and neck that everyone loves to pinch. She has a bit of newborn acne, and we have figured out (mercifully quickly this time, compared to Caleb) that she is sensitive to dairy products that I eat and drink, so I'm trying to avoid dairy and help her little gut not to be so gassy (and our nights not to be so short!)

Also in the last five weeks...Adam finished at Mile End and will start at Woodlands, his new special needs school, after the holidays (one more week). He has had two mornings there and is already showing that it's a much better environment for him. He's coming on in using signs and communicating, and starting to show a pretty strong independent streak! We're still grateful for Mr Tumble, and of course all the sunny weather to spend hours at the park.

We've also had a visit from the Chicken Pox fairy for Caleb, though his case only lasted a week. Adam started showing his spots tonight, not 5 hours after my parents left for home of course! It seems to be pretty mild so far, so we're hopeful for a quick recovery as well.

My parents left to go home this afternoon, and while I'm so thankful for all their help to our family for five weeks, I know it's the right time for us to begin learning how to live as a five-some and do it ourselves. The first afternoon and evening were ok, so here's to a few more of those! Of course if you don't hear from me for a while you will know why! :)

Agnes: Life has Changed

Our little girl is one week old today. Amazing how much can change in a week!!

She has middle names now too: Agnes Sophia Rose Brock, born 6th March 2011 at 11:28am. She weighed 7 lbs, 15.5 ounces at birth, and 20 grams more five days later! (most babies lose weight the first week) Not our lamb, though--cleanest burper you ever saw, doesn't lose a drop!

Here's Caleb and Daddy looking at old baby photos and connecting himself with the little bundle in his arms--best brother you could ask for so far! Adam...he's coming around, gives the baby kisses and his typical greeting, the hand over the mouth, but mostly he's his own man.

Life is going well, and with all the extra hands around we are settling in, eating well, sleeping just enough and relishing in the quiet moments to hold and cuddle new life, so recently still tucked away inside my body. It really is a miracle, and we're grateful for every little thing that is new, that we are reminded of about the boys and their early days, that we need to adjust to because of this new life.

Speaking of which: I need to go to bed! I'll try to post some more soon...