My Anonymous Friend

Your gift arrived today, and because I have no other way to contact you, I know you will read it here.

Are you actually someone who I don't know, or are you a friend who is disguising themselves because you would rather not be acknowledged for your generosity?

Either way, you are an amazing person and I have only two small words, that don't begin to do you justice:

THANK YOU.

Aside from your tremendous thoughtfulness and generosity, you have told me that people appreciate our story, and appreciate me. You could not have given me a greater gift than to make me feel appreciated.

You are right that it is my children that give me purpose, but you have no idea how much your actions will be a reminder to me to keep on keeping on, even on the days when I think I can't.

Whoever your child(ren) are, they are lucky to have such a beautiful soul for their mother. Thank you from the bottom of five hearts for being who you are. The world is a better place because of people like you.

Fooooood

We have had a fantastic Christmas. Lots of nice, thoughtful presents and visits with family.

We have eaten. And eaten. And eaten. It started with lunch on the 24th and has not stopped. Tonight we have another Christmas celebration and turkey dinner (our last) then have a 2 day reprieve before we head off to Pender Island for the start of our 3-day new years extravaganza.

We are full. Very, very full. And also very happy.

Season's Greetings to all of you!

Excited!

In one more sleep it's Christmas Eve - and I'm as excited (or more so) than Rio.

This is a big deal - a really big deal. Jordan and I have commented many times this Christmas season how good it feels to be excited. We're not used to it. You see, the past few Christmases have been not so great:

2008 - HORRIBLE. 2 weeks prior to Christmas was the hardest thing we had ever been through.

2009 - HORRIBLE. Boys in hospital + remembering how HORRIBLE the year before was.

2010 - Not quite so horrible, but bitter and sad bogged down by the previous 2 Christmases and really not able to get into the spirit.

2011 - EXCITED! We have been through our crap, damnit! It doesn't matter that we've had a few rough years around Christmas time. When I think about those times I still get sad, and probably will for a good long time. But the difference is, this year the sadness is not at the forefront, it is lingering back where I can mostly hide it away. This year we are ready to celebrate - enjoy the kids, the tree, the food, the drink, the generosity, and the general merriment of the season.

Can I reiterate again how good that feels?

Hurry up and come Christmas Eve! I'm ready to stuff my face and laugh and enjoy my family. BRING IT, Christmas!

A Christmas List - 2011

Dear Santa:

I'm directing my Christmas list to you this year - last year and the year before the kids had a hard time getting out to shop so I hoped you could take care of it for us this time.

2011 was quite a year, and not in the greatest way. So let's start with my most important wish for 2012: HEALTH. Please let us all be healthy in body and mind. H-E-A-L-T-H, that's all.

Secondly to health, please let us just be HAPPY. We've done pretty well at overcoming our obstacles and not letting them crush us, but let us start enjoying life without too many more roadblocks. Life is complicated, I know, but let them be every day complications, not life altering ones. Our family is ready, and needing, time to just be together, enjoy each other, and celebrate all the joy that is in our lives. No more sadness and resentment, just happiness and appreciation for all of our many blessings.

As for Asher, I am done asking for him to do specific things like sit or stand - I know he will do everything he can when he is ready, to the best of his ability, with hard work and patience that seems to have no end. A miracle would be nice but what I really wish is that his amazing and inspiring spirit continue to soar despite the challenges he faces.

Please let Nolan walk soon. I am losing my mind with worry because he doesn't! He is so close, he just needs to know he can let go do it on his own. But more importantly, let his menacing love of adventure and mischief continue to drive him and make him the crazy character who keeps us on our toes.

Continue to help Rio's confidence grow. Over the past months we have watched her come out of her shell and flourish. She is bright, funny, and lovely - let her continue to discover in herself all the wonderful things we see in her every day.

For me and Jordan, please let us continue to juggle our life's responsibilities with some grace. Winning the lottery would help, but status quo is good too. We're getting by, keeping our family safe and loved, and that's all I can ask for.

Santa, we're counting on you, and will be waiting on the 24th with a plate of cookies, a newly cleaned chimney, and some empty stockings. Our best to the Mrs. and your elves.

Love, The Trousdell Five
xo

PS - If there's any way you could help the Canucks win the Stanley Cup this year - wow, that would be awesome. If you felt like putting tickets under the tree that would be cool, but I'll take the win from the comfort of my couch if that's all you can do.

The Happiest Christmas Tree

Last week was Rio's school concert. Oh my word were they cute! The three kindergarten classes combined to sing "The Happiest Christmas Tree" (which I have been singing for a month as either the Sappiest or the Stinkiest, much to Rio's eye rolling chagrin) and "Little Toy Trains".

Considering the amount of stage fright Rio has had in the past (at a dance CLASS much less a performance) I was sooo proud of how well she did. Singing and doing her hand motions the entire time.

Unfortunately I left the camera to someone else. I won't mention any names, but let's just say that he is usually the good photographer who is responsible for 99% of our photos but for some reason he seriously dropped the ball that day. Ahem.

So luckily I had her auntie take this picture of her after the concert:

And other than that all I've got for you is a small, blurry picture that I snagged out of the school newsletter. Rio is top left - the bright red arrow pointing at her beautiful head to help you spot her.

50+ kindies in trees they made themselves - what could be cuter than that?!

Smart Kid

Last night Rio and I were role playing. Her favourite - mine not so much. This time she was the mom, Asher and Nolan were her babies, and I was some random childless friend of hers (woohoo for me!).

I will let you in on a small part of our conversation, but before I do let me tell you a few things: 1) She has never heard us describing Asher's CP to new friends and 2) we have never talked to her about Asher's future - we only speak in the present because for now that's all she cares to know. So here goes:

R: So I should tell you something about my sons.
T: Oh what's that?
R: Well Asher doesn't move like Nolan.
T: Ok, how come? (testing her)
R in a whisper: Mommy be real for a second - what happened to him again?
T in a whisper: His brain was hurt when he was a baby.
R still whispering: Oh riiight.
R speaking loudly again: His brain was hurt when he was a baby. He can't walk but he's trying to crawl.
T speaking loudly again: Oh I see. So is he going to walk when he's a grown up? (testing again).
R: Yes. (And stares at me dumfounded).

And the conversation continues.

I have to tell you how much power that "Yes" had. She answered me with such attitude in both her speech and her face that she was ensuring me I was crazy for even asking. In Rio's mind, of course Asher's going to walk. Just because he can't walk now, she has absolutely no reason to think otherwise. Why would she?

So why do I? Yes, I am more educated on his situation that her, of course. But why can't I have the blind faith she does?

I should try emulating my very smart girl more often. "Yes, he's going to walk". Full stop.

This Is What Happens...

...When Nolan tries to tell me he wants out of his chair and I don't listen (quickly enough)! Shirt and socks off, placemat and bib tossed aside, feet on the table. The man means business!

....When Asher is told to look cute for the camera!

....When Nolan is left alone with his sister's felts:

Never Simple

Good news is never simple here.

For instance today we found out some not just good, but great news - Asher was approved for the At Home Program (the assessment I wrote about last week). That means that going forward he will have most (if not all) of his supplies covered - seating system, orthotics, walker, wheelchair, diapers once he turns three - you name it! He's also been considered "dependent" enough to put us on the wait list for respite care. I have no idea how long the wait is, but the thought of ever having a respite worker to help out with the kids (obviously Asher in particular) is mind blowing to me. Exactly what Jordan and I could use to keep our energy reserves, health, and sanity in check.

This is fantastic news, right? Most of our financial stress around any gear Asher needs has been lifted!* So why did the news feel like a kick in the face? Why did I race out of our therapy session as quickly as I could to cry in the car? And why did Jordan feel the same?

Because this approval means that Asher has been deemed disabled enough to NEED this. A board of reviewers decided that Asher, and our family, need help. I can tell you, it does not feel good to need help because your child is disabled. It is heart breaking. The opening statement describing the program says it "assists parents with some of the extraordinary costs of caring for a child with severe disabilities at home through a range of health supports and services". Severe. That's a hard word to swallow.

I am however telling myself that similar to his CP diagnosis, this decision doesn't change Asher. He is no more or less disabled just because we are getting funding for him. He is who he is, every wonderful bit of him, and nothing about this changes that. I know that we will come to see this funding as the wonderfully advantageous thing that it really is, and I'm sure that when we make our first heinously expensive purchase (a seating system in the new year) we will be thrilled that we are not paying the bill!

All in all it is fantastic news and I am so glad we have it available to us. I just wish there was no sadness to go along with it for once.

*Unfortunately, this program doesn't cover an "alternative therapy" such as Feldenkrais. We're still on the hook for that one!

Feldenkrais

Recently Asher has started a new therapy called Feldenkrais. I have been hesitant to write about it because I don't have any idea how to explain it, but it's something we're going to pursue going forward so I figured I should give it a shot.

You can read some proper explanations here and here but I will give you the simple form of what I both see, and what I felt when I had a session myself (to better understand it).

The idea is "awareness through movement" - making you more aware of your body and helping you to find easier ways to move. Asher's practitioner stretches and supports and moves him in ways more conducive to helping the parts of him that don't work as well as he'd like. For instance, when she supports his shoulder and his rib cage, it is remarkable how well he is able to move his right arm; the more he is supported to use that arm in a way that feels more natural, the more he will learn to use it on his own. When I went for my session it was incredible to be made aware of all of the parts of your body you use for a simple movement that you take for granted (such as standing up).

My short explanation is not doing it justice, but all I can say is that we are seeing results. Not big ones, like suddenly he is sitting or crawling or walking, but little ones. For instance, he now regularly grabs his right hand with his left and clasps them (he NEVER did that before), he reaches out to use his right arm more often (crudely, but he is making the attempt) and he has more purposeful movements with his left hand (pressing buttons with just his pointer finger with a remarkable degree of control). I mentioned to her that the other when I brought his knees to his chest (something I do regularly when playing on the floor to encourage flexion) he grabbed at his pants and held on to them next to the knee. She was absolutely thrilled to hear that, as in the session prior she and Asher worked on putting his hands on his knees and he had obviously remembered (Jordan took him that day so I didn't see what they had done).

Seeing the results in such a short period of time make me feel such promise and believe that his brain really IS going to rewire itself in a lot of ways. Do I believe this is going to "fix" him? Absolutely not. Do I believe it is going to benefit him greatly? YES YES YES! Asher is soooo determined, and for every physical part of him that is weak, there are numerous other parts that are so strong and just waiting to be utilized. So when I think that maybe he can use all of his physical strength and most importantly his DETERMINATION to help him master some of the other parts of his body, it excites me to no end.

You should see him at therapy - our practitioner loves Asher, and he loves her. He is literally smiling the entire time we are with her, so that also reaffirms what a positive thing this is. Yes, he is a happy boy who loves to flirt and smile at the ladies, but as much as he loves his physio/occupational/speech therapists, they don't get the love she does. She has mentioned many times that he "knows he's something special" and he's "figured out he's a prince". Yes he has, and he's not afraid to let you know!

So it all sounds pretty positive right?! Well it is - almost. But the almost is a big one. It's expensive. It's not covered by our provincial medical, by Jordan's extended benefits, or by any funding that we have come across* . That leaves it completely on us. It is considered alternative therapy, which is ridiculous. We are not burning herbs and chanting and "willing" Asher to be healed - this is legitimate. But the government of Canada doesn't think so, so for now we pay. A lot.

So we compromise. We'll bring him far less often than we'd like to, but far more often than we can afford. Somehow we'll make it work. When we see results, even the teeniest tiniest ones, it gives us hope. And no price can be put on that.

*Anyone in BC who knows of something you think I may be unaware of, please let us know!

Baby's First Christmas

Rio has had no interest in sitting on Santa's lap since she was a baby and she didn't have a choice. Therefore, the boys have never sat on Santa's lap either. Since I have no current photo to share, here is baby Rio's first Christmas. Can I get a collective "OHMYGODSHE'SCUTE!!!"??

Broken Baby, Broken Dreams

This week, today in particular, marks the anniversary of saddest time of my life. Although I try not to dwell on it, it is not just one day, it is a series of events, which makes it worse. 

I don't think it's a coincidence (although I'm not entirely sure what it means) that I found out last week that a piece I had written on the subject would be published - today of all days.

This piece has been a work in progress for over a year. I am very proud of it, especially now so that it has been published, but I have a lot of anxiety about sharing it (so much so that I have seriously considered not posting it on the blog, despite the fact that it is published for the world to see; I barely slept last night knowing it would be out there today). This is the most difficult thing I have ever written and I am laying my heart out on a platter by letting others read it. I can only hope that these words do a tiny bit of justice to the love we felt, and still do feel, for our baby.

Full text below, but you can also see it published here in Exhale Magazine.

New Chair and Stander

Recently a whole lot of Asher's old gear has left the house and a couple of new things have entered. The only of these things he still uses are the Benik Vest and gaiters (rarely). The two main things he likes to do are sit and stand (as opposed to lying on the floor which he now refuses to do) so we have been working on some more ideal arrangements to encourage that.

1. Child Rite Seat - this chair is like a giant bumbo seat except can fit very large children (Rio can sit in it no problem). It is ideal for floor play, other than how big it is (you'll notice it's padded to fit him better). He is at an awkward stage where he is too big for a bumbo (or something similar) yet still too small for this. Regardless, this seems to be the best alternative for now.

Not his greatest pic. This was sadly the best of the bunch but you get the idea.

2. New stander - remember our old one? This one allows him to be at Nolan's level which is exactly where he wants to be. The old one had its place - it was way more supportive than this one, holding him in very securely in multiple places, but it was so huge and had him elevated far above Nolan who was playing on the floor. This one is way less supportive, but because Asher's core and trunk are getting stronger, he can deal. All around good news - we get rid of the beast of a stander, and Asher is showing us he can handle working a little harder while standing.

Look at me standing up straight like a big boy! It's not pretty - notice the crutch ends on top and three chunks of duct taped-pool noodle down each side. But you do what you gotta do to make it work!

A very serious model! Velcroed and strapped around the chest, behind the bum (to keep his pelvis tucked under), with padding at the knees so he can't bend his knees (too much). It's hard to see but we've also laid a sand bag weight over his feet to remind him to keep his feet firmly planted.

 Playing together upright as they should be. Makes my heart sing!

Next up we are looking at a walker. Not this kind (he's nowhere near that yet) or this kind (he had one but is too tall for it now), but something sort of in between. It supports him both front and back and let's him stand and play, while also allowing him to walk when the time comes. We tried it a few months ago and he was neither strong enough nor tall enough - we're hoping this time he's ready.

Have I mentioned how lucky we are that we have all (most) of this stuff to borrow from our early intervention program?! Right, yes, I have, many times. Obviously we are incredibly thankful.

A New Me

I wish it was something fun like a new hairdo or a brand new wardrobe, but no, it's just an extra set of eyes.

Asher was more intrigued by the camera strap than the camera itself.

Not sure about these glasses. It's a very weak prescription but still a lot for my eyes to get used to, so I am literally nauseous when I wear them. They eye doctor said that it could take a few days to get used to them but to wear them full time until I do and then taper off to "as needed" when my eyes are accustomed.

I thought my eyes were just "tired" and that I still had the perfect vision I've had my whole life. Well turns out that my vision is still almost perfect, but my eyes are working way too hard to make me see so well (hence the tired feeling). So unlike some people who put on their first pair of glasses and go "OH! That's what the world is supposed to look like!" I have the opposite - training my eyes to use the glasses instead of over compensating is causing my vision to be not as clear while I adjust. We'll see how this goes - given the nausea (I realize it's only day 1.25) I'm not sold.

I'm a bit self conscious. I love glasses on other people, just not necessarily me. Within 4 months, my reflection in the mirror has added a giant scar and a pair of glasses. That takes some getting used to. Jordan says I look like Liz Lemon - brunette, dark glasses, and a funny walk. Oh that husband of mine, isn't he something else?

Who Wants to be Assessed?

I have purposely avoided talking about the content of what I'm about to discuss, other than mentioning it in passing the other day. The whole ordeal sucked and I wanted to keep it to myself until I read a post written by a CP mama friend about a recent assessment she had done on her boys and it made me decide to share our experience.

Last week, Asher was assessed for a government program that, if he's approved, would provide us funding for any medical equipment he needs. Currently on the plate are a seating system, orthotics, and a bath seat, and down the road we'd look at things like a walker and/or a wheelchair. (When you can't sit you need help to do pretty much EVERYTHING). Obviously the funding would be hugely beneficial (these things do not come cheap and Jordan's insurance only covers a portion), but to get approved you need to have a pretty significant disability. So you can imagine how fun it was to show off just how disabled Asher is.

Every therapist and doctor on Asher's team is full of positivity. Yes, we talk about what he can't do - obviously - that needs to be addressed in order to help him. But mostly, we focus on what he CAN do. The tiniest of milestones ("inchstones" in his case) are celebrated. Take for example the fact that he recently clasped his hands together (with assistance) - you'd think he'd walked on the moon! But for this assessment, we needed to make clear all of the things he is unable to do, and sadly, there are a lot of them. Watching someone assess your child's every move (or lack thereof) is heart wrenching. It's not that I forget that Asher has a disability, but I'm not used to it being on display.

I dreaded the assessment for weeks, so much in fact that I considered not even applying. There were many, many tears and a whole lot of discussions, but in the end we went through with it and I am glad we did. The assessor (a nurse) was lovely, and made it as painless for us as possible. Asher, of course, was a delight, so knowing that he wasn't bothered by the whole process also made it easier to handle. That said, I am starting to receive copies of the paperwork associated with his assessment, and seeing all of these "can'ts" on paper is pretty depressing.

So now we wait until mid December when the decision goes in front of a panel. If he gets approved, great, and if he doesn't we re-apply in a year's time. I am trying to tell myself it's out of my hands so what happens happens and we'll deal with the outcome either way. Ha! When's the last time I let that happen? Can we say NEVER?!

Getting Used To The New

Last week, I had an epiphany where I thought the "new" normal felt a whole lot like the old normal.

Only a few days later, I had another moment - realizing how different the new normal (good as it is most times) feels from anything I envisioned for my life.

For instance, in the span of 3 days last week:

• Asher had a physiotherapy session where he was fitted with a new stander. It's so much better than his old one!
• The boys went to a special needs play group.
• We had an in home assessment by the government to determine if Asher is disabled enough to qualify for funding that would provide things like a seating system, a bath seat, and one day a wheelchair. (We find out later in the month).
• I was on the phone with an accountant who, after months of paperwork and waiting, was discussing our disability tax credit.
• I started planning for a disability savings account for Asher (that the government will match - similar to an RESP but better).

I'm not saying any of those things are bad. In fact, in light of our situation they are all pretty fantastic - all good and helpful things. But sheesh, 2 1/2 years ago did I think that's what an average week would look like? Not so much. The best part is that none of this seemed like a burden - it's just all part of our life now.

I guess the new normal doesn't need to feel like the old normal to feel normal after all.*

*Confused? Sorry.

Last Night

Last night went something like this:

7:30 - kids in bed
10:30 - adults in bed
11:30 - Tracey has coughed for an hour straight so Jordan moves downstairs
1:23 - Tracey has coughed for 3 hours straight and not slept. She looks at the clock for the last time she can remember so presumably falls asleep soon after.
2:35 - Asher wakes up screaming. Tracey has a cough lozenge glued to the side of her lip.
3:30 - Asher is still screaming, waking Nolan. Jordan hears from downstairs and comes up to help.
4:45 - Asher has fallen asleep but Nolan is now in the parents' room - inconsolable. Jordan goes back to bed downstairs (needs to work in the morning)
5:45 - Nolan is finally asleep in the playpen next to the parents' bed. Tracey thinks she can finally get to sleep!
6:15 - Tracey looks at the clock, still coughing. Gets up to take cough medicine for the third time. Presumably falls asleep sometime after that.
7:02 - Rio is awake and the day begins.

BOOOOOO. Sometimes being a parent is HARD! No sleep and a cough? Come on!

Sleep Sucks

Asher and Nolan have been back together since Tuesday. Of course since then Asher has not been sleeping well and I'm not sure why. Nolan sleeps silently so he isn't waking Asher, but maybe knowing Nolan is there next to him is enough (even though we rearranged their cribs so they can't see each other).

Yesterday Asher did not nap (cried for no good reason) and was clearly over tired. We put him to bed just fine, but around 1am SCREAMED for 1.5 hours. As much as I didn't want to give in, eventually I had to pick him up and soothe him - going in every few minutes to try to calm him was not cutting it. It went against all plans but what in parenthood doesn't?! His cheeks are terribly red this morning, so maybe the two year molars are coming? Somehow that makes me feel better.

Today finds us all tired and me sick again (laryngitis, cough, congestion and sore eyes). Eww. Good thing it's a Saturday and there's no reason to get out of jammies. Loads of coffee and kleenex coming my way!