Phew. Normal.

Here's the thing - I have been feeling like CRAP for weeks now. Tired, achy, and generally not well. I chalked it up to being a busy mom of three...but then I started wondering about my thryoid levels. This lump has doubled in size since last time anyone checked my blood - what if it wasn't ok?!

Then, worrying about my thyroid got me worried about the big C. Like if have a potentially cancerous lump currently growing on my thyroid, then maybe it's already spread and is ravaging my body and that's why I feel like crap. Of course I thought that, don't all sane people think like me?!

So instead of chastising myself for being a mental case, off I went to request bloodwork. My GP did a full work up to cover all bases. She wasn't supposed to call unless the results were worrisome, and even then I wasn't expecting to hear till at least Monday. So you can imagine how I felt when she called today - a Saturday. OMG I must be dying.

Nope, not even close. All is well in fact, but somehow I think she knows I'm crazy (she HAS been my doctor for a dozen years after all - I may have given her a hint a time or two in the past). She kindly put me out of my misery and called me as soon as she got the results to tell me I am fine. Just fine. Iron on the low side, probably explaining the tiredness, but otherwise fit as a fiddle.

Clearly I am tired and sore because I am out of shape and have two almost 30 pound babies who still need to be carried everywhere. Time to hit the gym maybe?! No denying how out of shape I am anymore :(

Neurology Appointment

After seeing the physiatrist and getting his CP diagnosis, our pediatrician suggested Asher additionally see a neurologist. We are lucky enough to have a well respected pediatric neurologist in town, so it only made sense. Asher saw her yesterday.

The doctor was great - very kind and knowledgeable, as we expected from all of the wonderful things we've heard about her. We talked at length about Asher's history and she asked a lot of questions about the events surrounding his birth and hospitalization. We also talked in detail about the MRI and when the timing is best. Instead of doing it now, as originally requested from our neuromuscular appointment, she prefers to wait until a child is past 2 years of age because the brain is changing until then. Because Asher is not regressing and losing skills, nor is anything he is doing/not doing a surprise given the injury we know his brain has sustained, there is no reason to rush into the imaging. Nothing the picture tells us will change either his therapy, or his outcome. Part of me wants to just know now because the MRI will let her see exactly what parts of his brain are injured and therefore make a fairly accurate prediction about what parts of him will be affected. But I know it doesn't do us any real good to rush it, when in reality no one knows what our little fighter will be capable of, or what miracles can happen.

So all in all, not much happened other than postponing the MRI until he's 2 1/2 (to get him well past 2 corrected). It was great to meet her and have her involved in Asher's care and we'll see her again in 6-8 months. We feel comforted that every set of the best eyes that need to be looking out for Asher are.

As always, we are thankful for our quality of care. And more importantly, thankful for our amazing baby*.

*You too Rio and Nolan. Obviously.

And They Win!

What is it about the love of a sports team that brings people together? That gives fans such joy and such sorrow? That makes people CRAZY?!

If only I knew, but I have have spent WAY too much time supporting the Canucks this year -  82 regular season games and 7 playoff games so far, with no end in sight. How are someone's hopes and dreams pinned on a group of men they've never even met? It's pretty pathetic when you break it down.

My blessed Canucks. They blew a 3-0 series lead to go to 7 games and finally win the series in overtime. I kid you not when I say I aged from 35 to 45 over night. My heart was put to the test. Grey hairs sprouted by the minute. I nearly lost my voice.

But it all ended as it should have, this round anyway. What happens in 2 or 3 days when the next round starts, and the drama begins again? My life is stressful enough - why do I add this uneccesary stress? WHY do I care so much?

I'm not the only one - my husband and several of our good friends are in the same boat. We are not bandwagon jumpers, we are tried and true fans, and will remain that way even if they, God forbid, they lose the next round. Sadly, we have projected this to our children, who are required to wear jerseys over their pajamas, even if they are hot and sweaty; who have to wait for bedtime till intermission; and who are somehow not woken when their parents lose their ever loving minds over the winning goal.

It all comes down to the faint glimmer of hope - what if they happen to win this ALL??? The prize I have been faithfully hoping they'll win my whole life. I have supported them and chastised them for as long as I can remember. Somehow, I feel as though I personally deserve this as much as they do.

If they win, my life will be just a bit happier.

Is that a sad statement? Probably. But you take your happiness where you can get it.

GO CANUCKS!

Mamas Don't Love Trainwrecks

I wrote the following piece for a contest. Your submission had to fall under one of two categories: 1) How I changed motherhood or 2) How motherhood changed me. I struggled with a topic for a long time, but finally decided to go with something under "how motherhood changed me". I didn't win (this is getting a bit depressing to only put stuff on here that has been rejected), but since this piece was current events when I wrote it I won't submit it elsewhere as it is now becoming old news. So here you go:

Mamas Don't Love Trainwrecks

As soon as the video begins rolling, I'm shocked. Before Charlie Sheen opens his mouth, the sight of him is disturbing. He's haggard, twitching and erratic. Nothing he says makes any sense and he's rude and obstinate. I'm so uncomfortable looking at him that I open another window on my laptop screen so I can cover the visual while still hearing the audio. I feel increasingly awkward as the video continues, so I eventually close it all together before it finishes.

I immediately fire off an email to my husband at work. He's seen the video and I want to know what he thinks.

“I'm not bi-polar, I'm bi-winning!” he responds, thinking he's so clever.

“Think of his parents watching this in the media. It's so sad!” I type back, undoubtedly disappointing my husband with no reaction to his joke.

Seeing the latest Hollywood celebrity to self-combust all over the Internet used to be my idea of fun as much as the next guy's - that is, until I became a mother. Now when I see someone in a sad and pathetic state like his, I can only think that they are someone's child. No mother ever intended her son to turn out as a stark-raving lunatic for all the world to see, and the thought of that breaks my heart. What does his mom think of this? I can assure you she is devastated that her son not only needs immediate medical attention, but has single-handedly made himself a global object of ridicule.

****

My husband has yet another story about a scumbag at the maximum security prison where he's a registered nurse. He doesn't usually know the details of their crimes, but has in-depth conversations with the inmates about their history, frequently including their family life and upbringing. Their situations are often horrible; some of them don't stand a chance to succeed in life, much less grow up to be anything but criminals.

Without fail, every time I hear these stories I cry. I lose perspective and don't think of them as thieves, rapists and murderers, but as scared little boys who were once innocent babies. I wonder what caused their downfall. Do they have loving mothers out there somewhere, grieving their sons' life choices, wondering what went wrong? Or worse yet, was it their mothers who failed them in the first place?

****

It's not just celebrities and convicts that get to me, my compassion lies especially close to home: my baby boy suffered a brain injury shortly after his extremely premature birth, causing permanent disabilities. I look at him every day and wonder what it will be like to be constantly compared to his typically developing identical twin brother and older sister. I worry about the struggles he will be up against, and I torment myself with thoughts of him facing ridicule by ignorant people. Motherhood definitely softened me with the birth of each child, but having a baby who is up against the odds sealed the deal on making me a first-rate bleeding heart.

****

I'm not going to lie to you. Of course I've chuckled at references to “adonis DNA”, “bitchin' rock star from mars” and all the rest of the garbage spewing from Charlie Sheen's mouth. How could I not? The quotes are everywhere. And If you haven't had at least one snicker at his expense, I think you're either fibbing or a much better person than I am.

The difference is that now I don't want to laugh at him, I want to look away from the train wreck that is his life and help him in some way. Ridiculous as he may be, he is after all, someone's baby.

Pender Island Easter

We got back today from our Easter trip to Pender Island and Jordan rushed off to work while I was left with an obscene amount of laundry and unpacking like it was Christmas morning. To say we got spoiled is an understatement.

Rio and her BFF had a blast as always when they get together. They went non stop all weekend and as a result Rio is absolutely exhausted and a bit under the weather tonight.  The kids had an intricate easter egg hunt whose end prize included an "Easter hamper" (that gives you a hint at how much stuff it included - the adults got our own hamper!), a beach excursion, hot tubbing, birdhouse building, egg colouring, cookie decorating, kite running, arts and crafting, slingshot shooting (nerf, totally safe and fun!), playing and laughing. The three little kids watched with wide eyes, enjoying their older siblings' merriment. The adults chased around after all of them, but more importantly ate, drank and laughed, on repeat.

As always, when we get together with these folks it's good for the soul. We had a fantastic Easter - I hope you did too!

Let's get hunting!

Nolan's not so sure

Check out how much our bunnies have grown since last year

Dads helping out with the hunt

Checking out their spoils

Besties beach walking

Heartbreaker

Mr. Serious

Love

April Randoms

I haven't written a good old fashioned random post in a while, so here you go with all that's new and exciting around here (sorry for no pics, we have been terrible recently):

• Nolan has learned "so big". You don't even need to fully ask "How big is Nolan?", you just have to go as far as "How big?". He is sooo proud of himself as he throws his hands into the air, over and over and over again.
• Nolan has learned to clap. This often accompanies "so big" because he is so proud he has to clap for himself.
• Nolan is cruising around the furniture all of a sudden, although I think walking on his own is still a ways off. It's been a big couple of learning weeks for him!
• Nolan has decided to scream before bed every night. It starts as he is lowering into the crib - his face begins to contort and I think he is joking he looks so ridiculous and then the wailing starts.
• Every night when Nolan screams Asher looks over at him and then looks up at me with a "what the hell is his problem?" look on his face. Asher then promptly rolls over and sucks his thumb and ignores him until he stops. It is too cute, and amazing how little they disturb each other.
• The boys have both taken to sleeping 14 hours per night (not every night, but often, and a minimum of 12.5 hrs). And then they have a 3 hour nap in the afternoon. Life is so good, and I honestly think this is why they have so easily caught up in size to their full term counterparts. They do a lot of growing in their sleep!
• Rio has preschool photos next week. I cannot wait, she is going to be so darn cute!
• Rio is registered in a soccer camp for the summer but we are looking for more activities for her. She asked if she could take dance and given our previous track record (3 failed attempts) I am a bit leery.
• Asher sees the pediatric neurologist next week. His pediatrician, who we LOVE, suggested he should see her in addition to the physiatrist who diagnosed him. We couldn't agree more and were thrilled we got in so quickly. 
• Asher is cutting his 11th tooth. Nolan only has 8. They got the first 8 in the exact same order with Nolan about a week ahead of Asher each time. Freaky. But as for these last 3, Asher is blowing him out of the water - two molars and an eye tooth.
• Asher will eat ANYTHING. That kid is a machine. Crunchy, spicy, you name it, he'll eat it and then immediately open his mouth waiting for more. Nolan is much more picky, and likes to scrape food out of his mouth with his hand and throw it on the floor if he doesn't like it. Asher has also started jamming his hand in his mouth while eating, so I hope he isn't learning Nolan's bad tricks.
• Both boys are talking like crazy. Nolan likes to babble non stop (his favourite being something like "tukkalukkatukkalukkatukalukka..."), but Asher likes to save it up for mimicking. Currently they have the following in their repertoires: mama, dada, baba, lala, brrr, and Asher's edge on Nolan - baby. 
• Yesterday I watched them across the room from each other, blowing raspberries and killing themselves laughing. One would blow a raspberry, they'd both laugh hysterically, then the other would do it back....over and over again. It is getting so cool to see them really interacting.
• I am still stressing about the thyroid but shockingly, am somewhat managing to take it day by day. I got some good feedback from my GP who agrees 100% with the findings of the endocrinologist, and I got some details about surgery and recovery from nurses who work in that area. I am still scared *beep*less of the surgery, but what can you do.
• Rio and I spring cleaned our house this week and she was actually a really big help, so I will take advantage as long as she thinks cleaning is FUN!
• Our blessed Canucks, God love them, need to finish their playoff series tonight or I'm going to lose my mind. How is watching sports this stressful??
• The kids have already been spoiled like crazy for Easter with grandmas and aunties dropping over way too many treats! We haven't even celebrated Easter yet! Rio will have enough treats to take her to Hallowe'en!
• Tomorrow we head to Pender Island for our annual Easter festivities (we have only missed one year since I was pregnant with Rio). We cannot wait to overindulge as usual when we get together and are looking forward to a relaxing getaway with some great friends.

Enjoy your Easter weekend - I hope the Easter bunny is good to you!

Therapy Explained - Eating

Here is the last part (for now) of my explanation of Asher's therapy. Eating is predominantly the focus of our occupational therapist (the rest are mostly led by our physio therapist). As Asher gets older, OT will become more involved in things like self care, dressing himself, etc, but for now, eating is the main thing we are working on.

Eating

Thankfully, Asher's eating has never been a concern. (I bet you couldn't have guessed that by looking at his physique could you?!!). Some kids with CP have difficulty controlling the muscles required to chew and swallow, can't hold their heads up, or even have issues with their metabolism, so we are blessed that Asher is fine in all of those areas. Asher (and Nolan) now eats the same foods we do (texture and spice)  but he does, however, struggle with self feeding.

So far, it seems as though his fine motor skills are really good (which, given his gross motor issues, is strange). He can open his hands and fingers well, and is even beginning to use his pincer grasp (thumb and forefinger) yet has issues picking up small food because his arm won't cooperate and bring it to his mouth. Often times he will pick up something small in his hand and then immediately drop it, as if he doesn't know what to do with it.

We noted to our OT that he does best with baby mum mum crackers - they are long and wide and he can easily grasp them - so she suggested that whenever possible we feed him "long" food (such as toast cut in soldier fashion). That has really helped him and we have seen major improvements. A few weeks ago he would pick up a piece of food, take a bite and then drop it, unable to pick it up himself. So we'd have to put it in his hand for him so he could take another bite and then drop it. Over and over until the food was finished. Now we leave the piece of food on the tray and he picks it up himself, takes a bite, and then intentionally puts it down. When he is done chewing he picks up that same piece and does it again. Over and over. It is very impressive to see how he has learned this and how much more confidence he has. Of course it isn't pretty, it's incredibly slow, and he often needs parental intervention to get him through the meal, but that's a huge improvement. 

In addition to the way we prepare his food, we also have a few tricks to make things easier. One is a curved spoon, as shown below. He isn't very interested in spoon feeding himself yet (nor is Nolan), preferring to use his spoon as a teether, but when he is willing to give it a try (mostly with our hand over his to guide him), it makes the trip to his mouth a bit shorter for his arm to bend.

Another item we use for both boys are the little sacs with a handle shown below. You fill them with hard or small food you wouldn't want your baby to eat on their own, but they can safely eat through a mesh bag. It is a good alternative for Asher to bring to and from his mouth. As you can see below, he likes to let it hang out of his mouth, hands free, while he chomps on it. Kind of defeats the purpose, but what can you do?! He's been cutting teeth like a champ, so we'll give him this one.

The other part of feeding we are working on is drinking from a sippy cup. Neither boy has any interest. We have tried several different makes and both of them just like to play with them or use the handles as a teether. (Or in Nolan's case he likes to hold it upside down and watch the water pour out). We will continue to work on this for both boys.

The last thing we are working on is adding a higher footrest to his high chair (currently there is a foot rest on both high chairs but the boys' legs are too short and their feet just dangle). The theory is that if he has his legs bent at 90 degrees with his feet planted flat on the footrest, he may feel more in control and be better able to stabilize his core, therefore making his arms more effective for eating. It's really all a trickle down effect for him, and takes a whole lot of trial and error. We'll see how that goes.

Ok peeps, I think that's it. There's Asher's therapy in a nutshell! (a rather large nutshell if you consider it's 4 posts worth). If you have any questions or suggestions, please feel free to share!

----

For more on Asher's thereapy, see posts on gear, positioning, and stretching.

Therapy Explained - Stretching/Exercises

Here is part three of my explanation of Asher's therapy.

Stretching/Exercises

Along with keeping Asher in good position, we also try to stretch him as often as possible. We try not to treat this as an actual 'exercise' but just fit it in when we are playing with him on the floor. Keeping him limber will help ensure his range of mobility, so it is important we stretch him as often as possible, even if for just a few seconds at a time. It has become second nature for us, just like keeping him in proper position, so you will probably notice that when we are interacting with Asher we are doing it without thinking.

When he is lying on his back, we pull his arms up over his head, you know like "How big is Ashy? Sooo big!", or I incorporate a song like "head and shoulders knees and toes". We also pull his legs up towards his head, trying to get him to eat his toes, or at least get his feet in that general direction (the giant cloth diaper doesn't help much with that!). We also point and flex his toes so his calves and ankles get a good stretch.  Another thing he likes is to pedal his legs. That keeps his hips and legs loose, and like pretty much everything else, makes him laugh.

In terms of exercises, we do things like help him roll over again and again (he can roll over himself, but isn't exactly graceful), shift his weight at his shoulders and "pull" him along the ground (so his body moves like a commando crawl and see what it feelsl like) or move him in and out of positions in a way he would do it himself (like from lying to sitting or from sitting to kneeling). All of these things help his brain and his muscles make the connection and remember how to do things.

For now, stretching and exercises are pretty low key. But as he gets older and is able to do more and able to follow instructions, I can imagine they will get more involved.

---
For more on Asher's therapy, see posts on positioning, gear and eating.

Therapy Explained - Gear

Here is part two of my explanation of Asher's therapy. This one is going to give you a glimpse of all of the gear we have been given to help him. 

I realize some of this may look uncomfortable to you, and you wonder how Asher can stand it. I promise you that nothing I am about to describe bothers him. For the number of items I am showing you here, there are at least as many that we have rejected because they haven't helped or he hasn't been comfortable using them. He is such an easy going guy that it is really amazing what he is will to put up with and by the same token, how easily he can communicate when it's time to stop. 

Bless Asher for being sooooo damn motivated, but it is often his effort that gets him into trouble. The idea of all of this stuff is to help him quiet some body parts in an attempt to better utilize others.

Ok enough preamble, here we go.

Gear

1. Gaiters: These are fabric lined with hard plastic, neoprene and velcro. They wrap around his legs and help keep his legs straight - a great support for standing. Sometimes he doesn't need them (see this video) and other times he is so hell bent on bending (pardon the pun) that they don't work. If it is a good day, they give him the added support he needs.

2. The exersaucer: At first, the exersaucer was frowned upon by physio. They don't like any device that encourages a preemie to stand on tippy toe, nor do they like the fact that a baby can flop around in the "seat". Because of this we rarely put Asher in it, but when we did we noticed that he had amazing control of his arms. He was able to play with toys comfortably, often using two hands at the same time which was completely unheard of in any other position. We decided that the pros (his arm mobility and his happiness being able to use his arms so well) outweigh the cons (imperfect legs) so we have worked with physio to figure out the best way to put him in it. Now everyone is happy, most of all Asher. The nice thing is, he has finally learned to stand in it properly, so the tippy toes are not even an issue anymore, as you can see in the photo below.

3. Thigh bands: Thigh bands are just wide pieces of elastic fabric sewn together in the middle. We have used the thigh bands for a variety of things, initially when he was doing tummy time, in an attempt to suppress his urge to draw his right leg into a bent position (as described in #1 above). They were very helpful in allowing him to roll over more successfully, stopping his bent leg from getting in the way. Most recently we have used them in the exersaucer to help him keep his legs loose. As seen in the photo below, we've had success!

4. Corner seat: Asher has had his corner seat for ages. Since he can't sit it is an excellent way to get him into practice sitting position, but also to allow him to play with toys upright like he would if he were sitting on his own. I realize it looks a bit like the electric chair with the velcro strapping him in, but he really enjoys it. Recently we have added velcro to the sides of the chair and the table to attach them to each other as he was getting too strong and pushing the table away. His recent favourite activity is to sit with their musical table in front of him (we took the legs off and it fits perfectly on top of the corner seat table). It's pretty cute when Nolan kneels with him and they both get going on it.

5. Not sure what this stuff is called (giant bag of firm-yet-soft plastic stuff that velcros together): There are a lot of pieces that configure in many different ways, but we have yet to try them all out. What we have used most frequently is the configuration shown below. The orange pieces on the side help prevent Asher from drawing his arms backward (ala the superhere cape described in #1 above). He really enjoys being in tummy time (usually without this stuff) but this just helps him stay in ideal position for a few minutes at a time. Contrary to the photo, he doesn't mind it, he is just taking a rest here after a few minutes of play. 

In the photo below, Nolan is modeling all of the other pieces that we haven't experimented with as much.

6. Benik vest: The Benik vest is one of my favourites. It is neoprene and all velcros together and helps keep Asher's core engaged. For the life of me I can't understand how he doesn't mind wearing it (it must be SO hot) but he doesn't, so we will keep up with it as long as the weather stays cool. I like using the vest when I am holding him and sitting with him because it allows him to maintain a perfect sitting position without working as hard. Additionally, it constitutes as "therapy" when really all I'm doing as snuggling with my babe. Perfect!

Doesn't he look like he's a little mini policeman in his bullet proof vest?!

7. Others: Phew! I think that's it for the main stuff.  But in addition to all of this, there are also a bunch of toys that allow Asher to get maximum stimulus from minimum effort (toys that require only a soft touch to vibrate or blink lights, or toys that are easy for him to grab with either/both hands). He also has some eating tools, which I'll get to in the separate eating post.

This is just the tip of the iceberg of "stuff" Asher will be using. Others have already come and go from our house, being not a good fit, or at least not the right tool for this moment in time. A new seating device and a stander are next on the agenda, so I will add new posts as new (useful) items are added. 

----

For more info on Asher's therapy, see posts on positioning, eating and stretching.

Therapy Explained - Positioning

A lot of people have asked what Asher's physio and occupational therapy entails and I usually answer with a much shorter answer than is required to give it justice (you'll see why below). I decided here is the place to really get into it, and also explain ways you can help when you are interacting with him. It's a lot of reading to get into at once, so I will break it down into a few different posts. 

Here we go with the first installment. 

Positioning

For now, the most important thing is how we handle Asher. We want to make sure that some of the less than ideal habits he is developing as a result of his high tone are suppressed as much as possible, and so we hold him/interact with him in ways to ensure his body is always positioned in the best way. For instance, his right arm has two bad tendencies - to either point out in front of him, like he is a super hero in flight, or to fly out behind him, like his arm is said superhero's cape (nice metaphor for my superhero, eh?). When holding him, we make sure he keeps his arm loose and at his side or slightly in front of him, ensuring there is no strange rotation. When he is comfortable this is easy to do, but when he is working hard he gets into his awkward positions, so part of the solution is to make sure he is comfy and relaxed and not straining for any reason.

In addition to his arm, he has a tendency to bring his right leg up, bent at the knee, close to his body. When he does this he also rotates his hips to turn them with his leg. Again, when he is relaxed this is not an issue, but when he is focussed on a task it tends to happen. When holding him or playing with him, we make sure he keeps that leg long and loose. His hamstrings seem to be a bit tight, so he likes to sit with his legs slightly bent.

In sitting, we also encourage him to use his core by giving him the least amount of support required (sometimes it is as little as fingers on his thighs if he is relaxed; other times he needs our hands around his waist). We make sure he doesn't curve his spine and is sitting in the most upright position he is capable of. We also make sure his bum is right under him, sitting directly on his sit bones.

Basically, if he is in a position that doesn't look "normal", we are trying to discourage it. We have lots of ways of doing so, for instance, gently shaking that extremity to loosen it, rubbing his back or sternum or ribs to encourage him to straighten his spine (depending on how he is bending), along with talking to him and reminding him to relax (this will become more and more important as he gets older and can remind himself to have a "quiet body" as our physio refers to it.

Any of these things are helpful when you are playing with him, so if it isn't obvious to you, please ask us. This aspect of his therapy is the way you can be the most helpful when you are with Asher.

---

For more on Asher's therapy, see posts on exercises, gear, and eating.

Standing

Asher can't usually stand by himself without a lot of support from both us and some tools on his legs (to be explained in another post that focuses on his therapy) so this was a REALLY big deal, hence the screeching mother in the background.

By the way, he came nowhere near falling off the chair, contrary to my abrupt end to the video...



Below, brother wanted to get in on the action.

Guest Blogger: Cary from About the Small Stuff

Note from Tracey: This post is important to Jordan and I. PLEASE be sure to read it, right to the end (I know it's long but it's worth it!).

I am so excited to have a guest post from Cary who blogs at About the Small Stuff. Cary and I "met" when I found her blog last summer. I read a post of hers where she described herself and I immediately felt a kinship. We have many many things in common, first and foremost, good Canadian girls (me on the west coast, her on the east) who love their red wine (ha!). No but seriously, the more important similarities go further.

Cary and family

Ben rockin the walker

Before I share her guest post with you, I would like to share another post of hers. This one, a guest post for someone else, speaks volumes to many things I am feeling now (grieving for the twins), and many more I hope to feel in the future (acceptance).

Ok now, I've said enough. Without further ado, here we go:

Momoirs - Belonging

Today is the perfect day to share this writing spark from my class through The Momoir Project. This particular assignment - Belonging - came shortly after we had yet another fiasco with Rio being too shy to participate in a class, so I decided to use this spark to put a positive spin on it. Today we almost had another miss. Last week Jordan took her to her first class of a new session of swimming and she refused to swim because her teacher was male. This week I took her and although she had been telling me she was going to swim, when we got there she dug her heels in (literally). Thankfully, it ended up that her teacher was female after all and last week's male was just a sub. Phew. 

-----

Belonging

Our four year old daughter is shy. She gets excited to try new activities, but as class is about to start she freezes. Each time it is the same - she looks around at all the other kids and parents and starts to doubt herself. I can see the questions in her eyes: "Am I good enough?, will it be too hard?, what if I fail?" as the uncertainty paralyzes her. Sometimes she is willing to stay and try it out, but most days we both leave defeated and frustrated, having not participated.

Being at home full time since our twin boys arrived, not only has her dependence on me increased, but she is also missing the socialization that daycare provided. My husband and I decide that preschool will give her more opportunity to interact with peers and ease the transition to kindergarten. We find a preschool that will start in the fall, three mornings per week and within walking distance; it's ideal. We spend weeks talking about how fun it will be and how many new friends she will make. I know this will eventually be true, but I am dreading the first day. I envision sobbing and clawing at my legs while I try to leave.

On the first day of school, the whole family accompanies her on the short walk down the street. As we pass our neighbours' houses and approach the familiar schoolyard, she skips and sings, her pink Dora the Explorer backpack bobbing up and down on her little back. It is raining lightly so we quicken our pace. I am preoccupied by her choice of outfit and whether she will be warm enough if the rain worsens; she seems to be bustling with excitement, not nerves.

We arrive at the school and reacquaint ourselves with the teacher whom we had met a few months prior. While timid, our daughter seems interested. We show her the coat rack and cubby hole and she is thrilled to see it labelled with her name. We ensure she knows where she can find the important things like the bathroom, a snack, and her stuffed blue bear that has been brought along for moral support. She surveys the rest of the room, impressed by the books, toys, and brightly coloured decorations on the walls. Eyeing up the other children, she carefully selects a seat at the art table and begins working on a craft.

I am unsure what to do next, so I look to the teacher who says we're free to leave. That's it?! We kiss and and hug our daughter and say goodbye, but we can barely pull her attention away from the project she is engaged in. We slowly approach the door and still no reaction. Stunned, I turn one last time to look over my shoulder and see if she's looking for me. Instead, she is up to her elbows in glue and sparkles. We make our exit.

When we return to pick her up, the teacher tells us there were no tears and no asking for me. I am thrilled but wonder if it was just the excitement of the first day. So, every day for the first couple of weeks I ask how she's doing but every day the answer is the same - happy, enthusiastic and helpful. I realize she's actually ok; better than ok in fact.

Now half way through the school year, she still wakes up asking "Is today a preschool day?", disappointed when it's not. When I go to pick her up at the end of class, I often arrive early and stay out of sight so I can watch her laughing and chasing the other kids around the playground. I see that my daughter is social, outgoing, and most astoundingly - comfortable.

Finally, our shy little girl has found the confidence to feel like she belongs. All of the other activities that's she's still too shy for will be there when she's ready.

The Sun Is Shining

In an otherwise pretty bleak spring so far, the sun is shining, and that is doing my soul a whole lot of good.

Am I at peace with the recent events? Hell no.

Am I still going to cry about all of this...regularly? Hell yes.

Am I the most worried person you have ever met in your life, envisioning all the worst case scenarios all the time? Absolutely.

BUT, self pity does no one any good. I have amazing support. First and foremost my husband and kids. Then the friends that are emailing and calling (sorry, still screening!) sending surprise packages and setting up play dates and setting up dinner dates. That is what's going to get me through.

So no more wallowing, at least not for today. How can you wallow when it's sunny outside and you live in the most beautiful place in the world with four of the most beautiful people in the world!?

Life Really Sucks Sometimes

Remember how 6 months ago I had to have a thyroid ultrasound because they had found a lump? Well the lump wasn't big enough to biopsy at that time but wasn't small enough to ignore, so my doctor sent me for a follow up ultrasound and potential biopsy in March. I did end up having a biopsy because it had grown, and so I have spent the past 3 weeks fearful of the results. I didn't tell many people what was going on as I didn't want everyone worried and then to have it all turn out fine. I had an appointment yesterday to find out the results, and all is not fine.

The good news: It is not definitively cancer.

The bad news: It is not definitely NOT cancer.

Did I lose you?

Basically, the results of the biopsy are inconclusive - it didn't show cancer, but it also didn't rule it out. Because the risk of cancer is there, my doctor wants it removed.

So what I know right now is that in 4-6 weeks I will meet with the surgeon and then 3-ish months after that I will have half of my thyroid taken out - the half with the lump. They will then send that sample to pathology and if they find nothing, we're done. If they find cancer, they go back in for a second surgery to remove the entire thyroid. Other treatment(s) will then likely follow but we didn't get into that. The appointment was a bit of a blur. In my typical organized fashion I had a list of questions for the doctor if it was cancer, and another list if it wasn't. Of course I didn't have a list of questions about the maybe is/maybe isn't cancer diagnosis. That one didn't factor in, imagine that.

So it is either a) Cancer, which really sucks or b) NOT cancer, which means I have been through surgery to remove half my thyroid gland for nothing, then leaving me with life long medication and a nasty scar on the front of my neck. Of course B is the preferred outcome, that goes without saying, but that outcome doesn't make me happy either. Either way, I'm looking at a life of drugs, a "medical condition" and a scar.

To say I am angry is an understatement. Livid and seething is more like it. Oh and throw in some devastation too. Can I wallow in self pity for a minute and ask WHY this is happening? Yes, I know it could be worse, much much worse, so PLEASE whatever you do don't point that out to me. Thinking about how much worse my life could be is what gets me through the day (while obviously thinking about the parts of it that are wonderful too). But thinking about how much EASIER it could be? That's a tough one not to think of too. I am exhausted by everything we have been thrown in the past 2 and a bit years. I am jealous when I look at other families around me. I am out of strength, yet need to muster it from somewhere.

I feel like my life is on pause until we meet the surgeon and then for months still after that until the surgery and the results come back. What does this do to all of our summer plans, or the trip to Mexico we are planning for the fall? More importantly, how am I supposed to walk around functioning like everything is normal?

I know the first question everyone is going to ask is "what can we do?" and I appreciate that so I'm going to tell you.

First and foremost, send positive vibes or prayers or whatever it is that you do to give this family strength. I am going to be selfish and say direct them first at me, but also at Jordan and Rio (I am hoping the boys come through all this without missing a beat!). When surgery/recovery happen, Jordan bears the brunt of the responsibility, not to mention the worry that I know he also carries but will never let on. And sweet Rio. I'm not telling her anything until I have to, but she is far too sensitive for her own good. Starting from when we lost the baby, through everything with the boys, she has been way too in tune with the emotions going on around her, no matter how much we have tried to shield her. She worries about us and she worries about her brothers, and that is so much for a four year old to take.

Secondly, babysitting. I know three kids is a lot to take, but again, when surgery and recovery happen, Jordan is going to need help. Lots of it. If you've noticed, we don't like to ask for help with the kids (hence the lack of date nights) but I think this time it's going to be necessary.

As per usual in times of crisis, I am putting the news out there and then telling you I don't want to talk about it till I'm ready. I know that kills those of you close to us who want to reach out in some way, but I need a few days to sort this all out myself.

I will be ok. What choice do I have?

Realization

Two weeks post diagosis, things are pretty much back to normal. The period of sadness that followed the news has morphed back into regular life - still a bit of sadness, but a lot of happiness and hope too.

I have been thinking a lot about why the diagnosis was so difficult to take, given that we knew it was coming. Again I will repeat that we weren't surprised, yet I was surprised in myself to feel such intense pain upon hearing the words.

I have come to realize that while I may not have been in denial, it was easy to go along with everyone else's very hopeful picture of our family:

There was endless talk of the boys playing hockey and being the next superstar Sedin twins.

There were jokes about the two of them chasing each other around the house, running us ragged.

There were conversations about backpacking adventures around the world.

When these conversations were happening, I would smile and go along with them even though I knew in my heart of hearts some of that was unlikely to happen. Because it was easier to "pretend" that our life was actually going to turn out like I had hoped it would, instead of admitting what I knew to be true.

And then the diagnosis came along. There was no "pretending" anything anymore.

Yes, Nolan may play hockey....and Asher may be a musical genius instead of receiving perfect cross ice passes from his brother.

Yes, they will find some way to chase each other around the house and run us ragged....just maybe not exactly how we'd pictured it.

Yes, we may still do family backpacking trips around the world....Asher might just need some extra time and assistance.

By no means are we going to let CP stop Asher, and us as a family from accomplishing our goals and dreams, but sometimes, it might take some more work and creativity. Our future will be a bright one....but it is still not the future we had imagined for ourselves. We have endless supportive CP families out there assuring me that we'll be ok and our lives will...one day...be "normal". Just a new normal.

I know that we are blessed and we are loved and that things could be so much worse. But things could also be easier, and for that, I accept the sadness.

Grieving the future you believed was rightfully yours is hard.

Homecoming!

A year ago today, April 2, we celebrated the happiest day of this family's life, bringing Asher and Nolan home from the hospital. You can read about how that day went down here and here and you can read about my take on it through my writing class here and here.

Like last year, we went out for breakfast at Mo:Le. We then spent some time enjoying downtown Victoria before before we have friends over for dinner tonight. A perfect day to celebrate a perfect day!

Some photos of our great day after the break.

Momoirs - Going Home

This writing spark - Going Home - from my writing class through The Momoir Project was assigned after I had already written one about "New Beginnings" on the same topic. I decided to make this one a continuation of the original. You can read New Beginnings here.

----

Going Home

I look down at the rough paper towel I'm using and cringe. I've been struggling with my cracked, sore hands, but no lotion can combat the amount of hand washing I do here. Every time I walk into the NICU I wash my hands, and then again each time I move back and forth between my twin boys. I have probably washed my hands a thousand times in the five months since their birth. I smile as I realize this is my last time doing this here; the first of many things I will do for the last time today.

We're totally organized to go home. Most of the boys' belongings have been slowly leaving with us all week. Their nurse and I review their complicated medication schedule and then our pediatrician arrives, ready to give them their well baby exam; it's strange to see after all the intense procedures they've been through. She graciously lets our three year old daughter help her, explaining everything as she goes along. She is kind and beautiful and our daughter is enamoured by her.

When both boys have been assessed, my husband and I excitedly dress them. For months they wore only a diaper in their hot, humid isolette; when they could maintain their own body temperature in a crib they graduated to sleepers with a hole cut in the leg, allowing for the wires connected to their monitors. Today they are free to wear whatever we choose and I have carefully considered the cutest possible outfits. When they're ready to be shown off we parade them through the nursery and everyone shrieks at the sight of them. We joke that babies are seldom big enough to leave the hospital wearing jeans, collared shirts and sweater vests.

As we're making our final preparations, one of the neonatologists comes in to say goodbye. "Can I hold them?" she asks, clarifying, "as babies, not as patients". The boys were at their most fragile, barely tolerating touch when they were under her care, so this is the most contact she has ever had with them. We snap a photo of her and our pediatrician before she hands them back to us, telling us how proud she is of them. I'm sure I see her eyes glossing over.

After strapping them into their car seats, there's nothing left to do but say our final goodbyes. Everyone is so happy for us, knowing what a long journey we've been on. The staff take a family picture and admire the boys one last time. They make us promise to visit and keep them updated on the boys' progress. We hug them and thank them and tell them how much they mean to us but the words aren't needed. They know.

And then we turn and walk out the door. It should feel surreal but it doesn't. We're all more than ready to go home.

Momoirs - New Beginnings

Since tomorrow is "homecoming day" thought I'd share some more writing on the subject.

Another spark from my writing class through The Momoir Project. A few weeks after I wrote this one - New Beginnings - the assignment was "Going Home". I couldn't think of any other more important going home moment to write about, so I turned that into a continuation of this same day. You can read that one here.

-----

New Beginnings

I wake up with butterflies in my stomach, having barely slept. In fact, I haven't really slept for the past week with all the last minute organizing we have been doing. We have had months to prepare, yet somehow it has all been left to the last minute, maybe because we were never sure this day would actually arrive.

I dress my daughter in a new dress and I pay extra attention to my own appearance because I know there will be plenty of photos taken today. I also know that the tears I will shed will leave streaks of makeup on my face so I am careful to look pulled together but not too made up.

We have decided to celebrate the magnitude of this day by stopping for breakfast at our favourite restaurant. As we are leaving the house, my husband sets up the self timer and we take our last photo as a family of three. Looking at the pictures, I am happy to see that the excitement in our eyes is for once outshining the worry and sadness that are normally so evident.

We arrive at the restaurant and quickly review the menu even though we order the same meals each time we come. Like every visit, I show my daughter, now happily colouring her menu, where we sat the first time we brought her here - the table next to the unlit wood stove, with her car seat propped on top. As I turn to look at the new art display on the wall, I can't believe what I am seeing: a local celebrity who is known to love this restaurant too. Every time we come I hope to see him but never have, until now. I think it must be fate that we see him today of all days. I admire his wife and daughter - what a perfect family they are.

Then the realization hits me that people may be looking at the three of us and thinking we too are a perfect family. A beautiful, giggling three year old with her smiling, loving parents. From the outside, I suppose it is a perfect scene because no one can see us on the inside. No one looking at us knows how broken we are and what a toll the past five months have taken on our family. They don't see that despite this morning's happiness, this family's strength has been pushed to its limits.

We finish our meals and then sit quietly looking at each other. "This is it", I think to myself. "Are we ready?" my husband asks, and I give a hesitant nod. I know he is not wondering whether we are ready to leave, rather whether we are ready for what is about to come.

We drive in silence. Tears roll slowly down my cheeks as I look out the window on this quiet Good Friday morning. I am crying for what we have been through, I am crying for the uncertain future we have ahead of us, and I am crying for the joy that is in my heart today. As we walk in to the hospital I wipe my eyes and cheerfully greet the nurses for the last time. Today, 152 days after their birth, we are bringing our premature sons home. Healthy (enough) at last.