Saturday, January 29, 2011

Detethering

Yep, there it is. Surgery number four is booked for Wednesday.

I talked to his nurse yesterday about the results of the MRI. What I wanted to hear was that there was a lot of space and free lowing fluid through the decompression site and a reduction in the size of the syrinx and that the tethered cord was now responsible for the loss of functioning. A quick snip and all would be restored. That may have been a pipe dream, I don't know. Sure wasn't what the case was. There is some space that has been opened up at the decompression site, not a ton, but more than there was the day after surgery. Enough that they are not interested in going back in right now to open it up more. The syrinx has not shrunk. If anything, it has grown. That was a huge pill to swallow.

Today I talked to his neurosurgeon and the consensus is to go in and do a detethering. I've been reading up on tethered cords and it's starting to make more sense to me now. From what I've read, a tethered cord can cause fluid build up along the spinal cord.  Hopefully, this is the cause and once fixed, the syrinx will shrink or at the very least, the detethering restores some functioning.

The average spinal cord dangles down and ends somewhere between L2 and L3, depending on how old you are. Because of the Chiari, Kingsley's brain hangs down to C3 in the top of his spine and ends down... I forget where. I'm looking at the MRI image from last time and it looks like she has it circled in the high sacral area, about where his defect was when he was born. That's about 3-4 vertebrae lower than it should be and it stuck there by the scar tissue. From what I understand, this tethering stretches the spinal cord like an elastic. The difference between it and an elastic is that it's not supposed to be stretching, it's supposed to be dangling and this stretching causes damage to it.

The surgery will be 3-4 hours long (shorter than the decompression) and will involve the dr going in near the original scar from when they closed his back. His scar will now be a bit longer/higher than before, which is too bad. Currently, it's hidden underneath his diaper. When he's swimming or topless for some reason, you can't see it. I liked that, for his sake. Although, really, we're sort of beyond the point of hiding his scars anymore after the last surgery.

He'll be in the hospital for about a week, on his tummy for the first few days. His dr says he will recover faster than after the closure because he's older now. The other good news (in my opinion!) is that the baby/kids wing of the hospital has been moved and the nightmare we had last time with the noise and lights and people will be avoided because it's all private rooms! YAY!!

The only wrench in this plan is that Kingsley (and I) are currently sick. The girls have been sick all week and it knocked us out yesterday. He's got a low grade fever, he threw up twice and he's not sleeping well. I know, half of you automatically went: EEEK!! SHUNT!! ;) Thank goodness we got that MRI done or we'd be sitting in the ER right now. I'm quite relieved to have his first real 'sick day' without having the added panic of wondering about Billy (that's his shunt's name). I'm going to take him to the walk-in later today to rule out an ear infection so that he's on his road to health by pre-admit on Tuesday.

The surgery news really hit me hard yesterday. I knew it was coming, but I was still holding out for that miracle. Today, I'm in go-mode. I'm planning.  I scrubbed my house from top to almost-bottom (I wore myself out before the floors got done), I'm making meal plans, grocery lists, lining up babysitters, talking to Rachel and Cordelia about another week away from them.  Life is on hold again.

And just so I remember later to follow up - I read something last night about scoliosis and tethered cords. No one has ever mentioned it in regards to Kingsley, but he leans all the time to one side. I've been told it's not a hip-thing, possibly a neurological thing. I wonder now if it's related to the tethered cord. Or perhaps I should stop reading.

Thursday, January 27, 2011

MRI Day

Kingsley had his MRI today and did fabulous, as usual. The girls are both sick and I am not entirely sure I even slept last night, but that led to everyone sleeping in late which helped with not being able to feed Kingsley this morning. Another stroke of luck was getting called in over an hour early, which basically never happens. He gave the saddest cry in the world when the mask was put on him, which just about broke my heart. An hour later, he was up and waiting for me. We haven't heard back from neurosurgery with the results. I'm absolutely nauseated trying not to think about what could be going on. I imagine that at this point the answer couldn't be worse than what I'm thinking.  Hopefully, we will hear tomorrow.

no sleep + no food = ROCKSTAR

Friday, January 21, 2011

DING! Round Two...

I kind of like data, so I'm sure it's not surprising to some of you that after seeing the neurosurgeon again last week, I started taking data. Data is nice. It's objective. It is what it is. You can't argue with data. So, while Kingsley is having his diaper changed, the same time every day, roughly the same length of time, I watch his legs and count the kicks. Nine days of data.

The trouble was the operational definition. First, I counted his kicks, when he pulled his legs up with his thighs perpendicular to the floor.  Then, I was looking at just pulling his legs up. Then moving his legs in any way. Then twitching. And no matter how many times I changed that operational definition, the numbers still kept going down. You can't argue with data, even when it's lousy.

I've been working on his sitting as well. You would think that after a couple of weeks, he'd be even stronger, but that's not the case. He leans more, he uses his hands for support more.

I called his nurse today after finding excuses for the last two days to put it off. They're going to try to fit him in for an MRI next Thursday. We have to go through pre-admit again on Monday.

And so it begins again...

His nurse tried to explain what they are thinking is happening, but I had one of those rare moments where my brain just stopped functioning and I only half heard and understood what she was saying. They're going to check out his shunt, obviously.  Otherwise, I think the assumption is that the decompression was effective and won't need to be repeated, because he did have improvements. I think they think that there's something else at play, that 'something' being his tethered cord.

I'll sidebar for those who don't speak SB-ese.  Most people with SB have a tethered cord. Your spinal cord is supposed to dangle inside your spinal column. Because of all the fun stuff happening with Kingsley's spinal cord being open and the Chiari and yadda yadda, his cord hangs lower and has gotten attached to the scar tissue in there. They're thinking that they may have to go back in to his original scar area, where the opening was when he was born and ever so carefully slice the spinal cord away from the scar tissue so that it dangles freely again. A tethered cord doesn't always cause problems. If it does act up, it's usually during growth spurts like puberty. I don't think it's common during babyhood.

Clearly, I need to ask more questions. I don't understand what is happening and it is scaring me. Terrifying me. I'm horrified by the thought of more surgery. I'm scared they'll find an answer. I'm scared they won't find an answer. I'm scared of things I can't even put into words.

And all the while, my little boy doesn't have a clue that this is going on. He's showing absolutely no other signs that something is going wrong. He's chatty (added Dadadada and Nananana to his vocab), he's eating and even starting to take some milk from a sippy cup (ALLELUIA!!), he is still Mr. Social and Flirty and most importantly, he's happy.

He's also turning into a little techie.  See that focus? My phone is the new primo cath toy. ;)

Tuesday, January 18, 2011

Kingsley's First Year

Every birthday since Rachel turned one I have made a photo montage of the year.  They haven't always been finished anywhere near the actual birthday so this is something of a record! I love being able to look back over the whole year and see the changes that have happened in their little lives. Kingsley is no exception - his growth and development (and cuteness) is fascinating to me. My little rockstar continues to live up to his name.

Saturday, January 15, 2011

Birthday

For the past four months I've been reliving what I went through the year before. Anniversaries of sadness and grief. The day we first heard the S B words. The day we were told he was fine. The day we were told he was not fine. The arguments over his birth. The planning for his birth. The ultrasounds. The doctors and specialists and nurses. The big scare when we though he was coming early. The last days. The fear. The dread. The hope.

Today is the last of the anniversary days. The day the clouds lifted.

The day I met my little boy.
 And fell hopelessly in love.

It was love at first sight. :)


It was a strange thing to remember the day. An unbelievable amount of living was crammed into 24 hours that day.  I was slow. I was distracted. I forgot the time of my last OB appointment and had missed it. I was frantic and frustrated with myself (... and still wondering if baby brain will ever go away??).  Then I got there and lay down and saw my little man on the u/s screen for the last time.  Relaxed. Nothing else to do that day except sit and wait for them to fit me in with my OB.  It was mid-morning. I was in the waiting room in the hospital on the third floor. I was so uncomfortable.

I saw someone I knew.  We sat and chatted about babies and life. I talked to her, but the whole time my mind was racing. I wasn't just uncomfortable, I was having contractions. We kept chatting. I subtly looked at my watch. Regular contractions.

I have never been afraid of labour, not even with Rachel. With my first two babies, the same sort of calm came over me when I realized this was The Day. There was no thinking ahead. There was no panic. Just the calm knowledge that my body was doing what it was doing.  With Kingsley, there was a hefty dose of denial mixed in with that calm. I tried to convince the resident that she most definitely did not need to check to see if I was dilated. My OB came in and announced that today was indeed the day. I was shocked. Why was I shocked?  LOL! I had been having regular contractions for nearly 2 hours, the news that he would be born that day should not have been a shock.

Then came the phone calls. It was lunch time. I was worried about tracking down Jeff. The planning. The list of things to put in my bag (I thought I had all weekend to pack!). The assurances that I was fine to drive across the city to the other hospital. I got there. Still a bit of denial, but mostly that calm again. Things were out of my control.

Hours passing. Waiting and talking. Lots of people talking to me about what would be happening. About what was happening. Yeah, yeah, yeah, blah blah, I'm meeting my boy today.  I wished that I had done my hair. It's strange, the thoughts that go through your head.


His birthday party started today at 2:30. This ^ picture was taken at 2:30.

At 3:00pm, my OB arrived and asked if I was ready. We went down to the OR.

At 3:58pm, my angel was born. At 3:58pm, I was sitting on the floor in the playroom watching 6 kids play Pass the Parcel.

The party ended at 4:30 and people were slow to leave. At 5pm, people were lingering. Last year, this guy was lingering...
They brought him back to my recovery room after I was done. It was blissful. He was gorgeous. I couldn't drink him in fast enough.

Time blurred after he left. Just waiting to go see him again. Tonight, time blurred. I recall telling Rachel and Cordelia that dinner was the leftover apps and whatnot that were leftover from the party. Go ahead. Eat until you're full. I cleaned. I tried to settle my overwhelmed and exhausted birthday boy. Rachel ate until she threw up, which upset Cordelia so much she peed her pants. I can't make this stuff up.

About the time things calmed down here was about the time I was reunited with my angel last year. Then he got the call for surgery and was taken away. Jeff and I went back to my room and announced to the world that our baby boy had arrived. We were so euphoric, so in love, so happy. The time flew, and then his surgeon was there telling us we could go down and see him again.

I barely slept that night. I was so itchy from the drugs, but wouldn't take Benadryl because it makes me drowsy and I was afraid I'd miss something. I lay there in my hospital bed wide awake with my eyes closed, seeing his beautiful face behind my eye lids, remembering every inch of his body. I could not wait for daylight so that I could get back to him.

Last year, we were happy.

This year, (is it possible?) we are happier.
(and I did my hair)

We have so many anniversaries to come. 

Tomorrow is the anniversary of the first day I held my little angel. 

Tuesday is his shunt-iversary, a very rough day to have gone through.  

Then there is the anniversary of him coming home. 

The days of doom are over. Any anniversary we have now is exponentially better because he is here. Good days, bad days, good news, bad news. All is doable with his beautiful face in front of us. 

At one year old, Kingsley is happy....
(and smart! See? He's holding up 1 finger to tell you how old he is now.)
  

 He's healthy...
(and a bit too healthy, if you ask me. he refused to actually eat his cupcake. too much butter and sugar.)


He's beautiful....

And thriving....

Happy Birthday, Kingsley!  We are looking forward to a lifetime of wonderful birthday memories with our favourite little boy. WE LOVE YOU!!!

Friday, January 14, 2011

Angels Among Us

If this journey we've been on for the last 16 month has taught me anything, it is that there are people placed in your life at times that are so perfect, it can only be because they are part angel.

It started with my OB. I had no idea how to choose an OB when I got pregnant with Rachel. My friend Lindsay told me to go with this one that she knew through school/work (Lindsay also told me once up on a time to keep my eyes out for this cute guy named Jeff that I would be working with, so she has golden angel wings for sure ;)). Not knowing any different, I requested her. She was a high risk OB, just starting out at the hospital I wanted and she needed to build up her practice by taking on 'regular' pregnant women. Rachel was the first baby born under her care here.

I went back to her for Cordelia because she said I could. When I got pregnant with Kingsley, I had decided to try out a midwife.  When Jeff and I were going down for the level 2 ultrasound that would end up diagnosing Kingsley's SB, I bumped into my OB in the hallway. She shared an office with the doctor we had been referred to for the u/s and saw my file and she was also friends with my MW. She said to me: "If you get some news today, I would be happy to take you in my care again."  Later on, the OB we who consulted with us told me: "If you want to continue with the pregnancy, you can come under my care."  The difference is small, but spoke volumes to me. I went with my original OB and I could not have survived my pregnancy without her support and care. She was everything we needed and then some.

One year ago today, I met another angel. She is the mother of a little girl with SB and we had been emailing back and forth for weeks. I finally got up the nerve to meet with her. We spent hours pouring over her pictures of her baby girl, talking about our fears and her celebrations with her sweet girl. She told me every detail of her hospital stay and told me exactly what to expect. Our baby's would have the same surgeons, in the same hospital. She told me about how she had had her c/s booked, but had gone into labour a couple days early. The next day, I went into labour 3 days before my planned c/s date, but I was prepared.

This past autumn, I met my second SB mom.  She introduced me to her son and told me about how he had a posterior fossa decompression when he was 4 months old. A few short weeks later, I was sending her a frantic message after receiving the news that Kingsley would be having the same surgery with the same surgeon.  She was able to prepare us in ways that no doctor could and was an amazing source of support through the whole thing. (thank you thank you thank you!!!)

And then, as if I needed more evidence of angels around us, on Kingsley's first night in the PCCU after having his surgery, his nurse told me that we should go home and sleep. I was so torn. I had no idea how I was going to leave my baby boy after he had just gone through such an ordeal. The nurse then causally mentioned that he knew a boy with SB and had known his mother since they were kids - it was the same family we had just met. It was as if someone had just whispered in my ear: See? I got this one. It's going to be alright.


There have been so many other people this year that have done things I can't even being to thank them for. When we get bad news and more bad news,  when we get good news, and more good news, we have an army of people standing ready to send out love and support to us.  How could we have possibly made it through this year without all of you?

As a mom of a child with SB, I am often told that I am strong. I don't know whether or not it's true. Most days it just feels like I'm lucky to have so many angels around me, holding me up.

 This angel most of all.

Wednesday, January 12, 2011

Keep on Running

Last April, I started running. This is not a remarkable thing.  However, those who have known me a while were quite a bit shocked and stunned. See, I sort of hate running. Whenever anyone mentioned running, I would groan and moan and reach for my yoga mat. I come from a family of runners and did distance running through elementary school and highschool until one day I stopped (literally) and asked why I was doing something I hated so much. And that was that. There were a few years there where I actually ran the Run for the Cure, but luckily babies and bellies have prevented that for the last 6 years ;) 

And now I run. I even bought a treadmill this fall and have been getting on it regularly. I won't say I love it, but it is growing on me. I'm still doing the Couch to 5K program (still? again?) and I swear I will get to the end this time.

I don't really know what motivated me to start running (other than the big leftover baby belly hanging there), but what keeps me going is Kingsley. Knowing that he may never walk, nevermind run, motivates me to not take that ability for granted. My legs will not be wasted on me.

I needed that reminder today. I sat down at my laptop, ready to dent the couch all evening and the first thing that I saw was this video. Watch it! No excuses. My only thought was: THIS IS MY SON!! I mean, okay, not literally. Maybe if he was 25 years older, black, and had biceps the circumference of his whole body... but this is exactly why I run. This is why I take the stairs. This is why I got off the couch tonight. I'm not sitting this one out and my feet don't hurt.



(to save you the trouble of googling, he does have SB and he's an Olympian)

Let's All Hurry Up and Wait!

Yesterday, Kingsley's PT and new PT-to-be came to hang out with the cutest boy in my world and I asked about his legs not moving much again. They watched him, played with him, were stunned at his progress in sitting and tummy play in one short week, and then reluctantly agreed that his legs were pretty still compared to a week or two ago. I called his neuro nurse and left a message.  I held my breath and stayed off the phone until 6pm, anticipating a call back, but it never came. I relaxed. A little bit.

This morning, I didn't even think about it. Kingsley had another appointment, this time with a Gastroenterologist (poop doctor) and while we were waiting, his neuro nurse came by and asked if we had time to meet with his neurosurgeon afterward.... wahn wahn waaaaaahn. :(  Nothing too noteable - it is still too soon post-op to do another MRI and see if anything has changed for the better or worse, so we have a follow up appointment in one month and I am to watch and see if anything considerable changes in the time being. If there are big changes for the worse, I am to call and bring him in earlier. Could be a fluke. She mentioned the S- word. This time it was 'detethering surgery'.  *hurk*

And as usual, Kingsley continues to impress in other areas while this one little thing keeps bringing him (or me, really, he's happy as ever!) down. His gastro doc wants to see if he can go without PEG (Miralax/Restoralax depending on where you live) and do something more natural, so we are going to start giving him a tsp of ground flax seed at each meal and gradually decrease the PEG. He says Kingsley has some tone, so there is a chance at that stuff not being as much of a problem... if you don't know what I mean here, that's probably for the best. ;) 

And as usual, the resident did feel the need to ask me if I took folic acid when I was pregnant. I am sure this is vitally important information for a gastroenterologist resident to know - that is relevant to his pooping, right? Yeah, thought so. Gee, I wish more people felt the need to ask about that.

 
So, here we sit. :) More waiting, more wondering. No real answers. Possible surgery. We've been here before. I really wish that this road was simpler. Is it ever simple? At least we're sitting pretty, har har.

Tuesday, January 11, 2011

I'm Paranoid

My apologies for anyone who is going to have the Jonas Brothers in their head all day. You're in good company because it's what I have thought (and then sung) at least a hundred times in the last 24 hours. I don't even know what happened or if this is in my head or UGH! I guess paranoid is the only word that sums it up.

It stems from Kingsley losing functioning. I didn't see it. I know why I didn't see it, I know I wasn't the only one that didn't see it. I know we're all kicking ourselves wondering why we didn't catch this earlier or why we didn't even realize it until it had gone so far downhill. I also know that it would've been really hard to see something so subtle changing so minimally on a daily basis when you spend all day every day with Kingsley. I get it. And I also know that no matter when I had caught it, we would've ended up in the hospital with the same result. I know this.

But it still makes me ill to think about. I missed it. I didn't see my son losing his leg functioning. I don't even know when it happened.

I was talking to his OT the other day about it and we both said what we both knew - he was making SO MANY gains in other areas. We were so focused on what he could do, we didn't see what he wasn't doing. His fine motor, his communication, his social skills, his time on his tummy and moving around with his arms were all doing amazing! No sign of anything wrong.

Which brings me to my current paranoid state.

Kingsley is doing amazing. A. May. Zing. He's sitting up on his own!!  I sit him up and he just stays there (mostly), playing with toys, looking around. He even corrects his posture or catches himself from falling (although he still needs to work on this a bit).   He's never done this before. Even in the summer, before I missed whatever I missed, he wasn't sitting up this well. So awesome. And he's talking up a storm! He says MOM/MAMAMAMA and actually means ME. He says BUH-BYE and I swear he's saying HIYA. And in between hi and bye, he's got a whole lot of babbling and repeating sounds.  He's also right back to where he was pre-surgery with his tummy time and pushing around on his arms.  He's close to army crawling, I can feel it. He's eating more (alleluia!) and sleeping alright (don't get excited - still up about 3x, but at least he goes right back to sleep).  Things are going great.

Did you just hear that doom music play? Cue the Jonas Brothers again.

He's not moving his legs much. My mom asked me about it over Christmas and I was able to answer with a firm YES, he was still moving just as much as ever. Big kicks from the hip, all the time (I say kick, but really he's just lifting his legs from the hips, like doing a squat on his back). She hadn't seen him doing it that day because when he's sitting on a couch or being held, he doesn't do it as much and that's all the had been doing, but during diaper changes and lying on his back playing, it was there. Strong. When his PT was over during the holidays, he did it constantly, on cue, the whole time she was here.

Yesterday, we had clinic (which is noneventful for reasons I'll save for another day) and the developmental paediatrician had him on his back, asking about his leg movement and... he just lay there. It wasn't until she said, "Oh, there's what we're looking for!" and he kicked that I realized what was significant here. Not the fact that he kicked, but that he only kicked once.

This morning, I was getting him ready (cathed) and trying to get the girls dressed and all the usual morning insanity and the thought crossed my mind: I'll just prop the bottle here and get Cordelia dressed or this will take all morning... Nononononono.... Instead, I sat there while Cordelia raced around the house with a hairband around her waist (and nothing else) and watched Kingsley's legs.

I can't do it again. I can't do the hospital. I can't let them cut my baby's head open again. Once was bad enough - I didn't really know what to expect or what was happening. I didn't have time to think about what they were actually doing. If he has to go through it again, I don't even know how we'll do it.

Maybe it's a fluke. Maybe he's just tired. Maybe his diaper is too bulky. Maybe maybe maybe. Maybe it's a shunt problem.  Never thought I'd be praying for a shunt failure. Please give me something mundane and boring - give me teething, give me a UTI, an ear infection, a wicked diaper rash, but don't let this be what I'm afraid it might be.

His PT will be here in a half hour. Can we stay in this limbo of not knowing? Because if my paranoia is justified, I don't want to know.

Tuesday, January 4, 2011

Mommy Olympics, Event 38

I imagine sometimes that there are Mommy Olympics. There'd be the basic events like diaper changing, baby dressing, bathing, feeding purees, stroller opening, and diaper bag packing. Then there'd be the advanced events like crib assembling and giving The Talk without blushing.  I would definitely medal in furniture and toy assembly. Some Assembly Required is all me... just pass the earmuffs for the little ones because it usually involves a fair amount of swearing. I'm fairly certain I won't medal in The Talk ;) 

But the one event I would be getting gold in would be Car Seat Installation. I could do it in a dark van at midnight, forward facing, rear facing, bucket seat, I got it. Sometimes I have to call in Jeff for the muscle at the end (as I twist into a pretzel trying to apply maximum pressure to critical points in the seat and the back at the same time) to pull the belt tight, but most of the time I don't bother because I've already aced it.

Why the carseat chat? Today, Kingsley moved up in the world. Both he and Rachel needed to move into new carseats and this predicament found me with 2 carseats to be removed from the van and 2 to be reinstalled and I only had 30 minutes to do it. I felt like I was doing one of those ridiculous challenges on Amazing Race. Incredibly though, I did it with time to spare. So now my little man is in a grown up carseat and my big girl is in a big girl carseat. He looks so small in his carseat again. So cute.

Hear that? It's the Canadian national anthem ;)

Sunday, January 2, 2011

The Lucky Ones

Too often, I hear people using the phrase: It could be worse. I don't know if it's just the adult world, or the parenting world, or just the parents-of-kids-with-special-needs world, but I feel like I hear it all the time. You know how it goes -  you have a kid throwing up and someone says: "Well, it could be worse! It could be ALL of your kids throwing up!" or you hate your job and someone says: "It could be worse! You could be unemployed!" or, in my world: "It could be worse. SB is manageable. At least it's not xyz diagnosis."

The phrase annoys me. I feel like it diminishes someones pain or frustration. It sounds patronizing. Sometimes, situations are rough and that's okay to acknowledge. As someone sagely once told me: "Just because someone else has a broken leg doesn't mean your sprained ankle doesn't hurt like hell."  Which is exactly right. Just because there are things so much worse than SB, that does not mean that SB doesn't suck.  A lot. As does every other thing I feel like complaining about in any given moment.  ;)

And if I'm being honest, to me the phrase is also a bit painful. As if I can hear other mothers squeezing their own naturally-mobile children tight, thinking about Kingsley and saying it to themselves, just as I have done so often thinking about other special kids I have known. 'Worse' is always relative, isn't it? 

However, today, I have found myself thinking these thoughts with a heavy heart. I look at my three beautiful children. I look at Kingsley's scars. I think: It could be worse. It could be so much worse.  Because, as I have noted previously a scar does not form on the dying. And the very fact that I can go upstairs and hug all three of my children if I want to reminds me that things could indeed be worse. 

There is a new angel in heaven today. A sweet baby girl, who was only with us for ten days. Tonight, she is up there with her grandpa instead of with her parents and her sister and all of the family that loves her so much, despite barely having any time to get to know her. She was born with Trisomy 18, so her story was destined to end before it should have, no matter what anyone did. Somehow, that doesn't make it any less sad. Any less unfair. Any less wrong. Any less devastating for her parents. 

It has made me realize that we are the lucky ones. All of us that have our sweet little children here on earth with us. No matter the challenges we have to face for them, no matter what fights we find ourselves fighting for them, no matter how much heartache we feel on their behalf.  We are the lucky ones. We get to feel that pain, we get to fight that fight, we get to face those challenges. For however long we are blessed to care for our little people, we are so lucky to be able to do that. To know them. To watch them sleep. To kiss their little faces until their sticky hands push us away and they complain that they can't see the TV or that we're making them mess up their painting. We are lucky for whatever moments we have with our children.  

No matter how many scars zigzag across his little body, no matter what level he functions at, no matter how many times he wakes me up at night, I am lucky. I don't ever want to forget that. 



Saturday, January 1, 2011

The Year in Review... How Cliche ;)

I'm so nostalgic. Usually, New Years Eve is blah for me. I gave up on caring about what to do and what to wear about 10 years ago. So overrated.

But this year is so different. I keep thinking back to the past year and feeling the need to celebrate. To toast what a year it was. Amazing, challenging, heart wrenching, and fantastic. I feel like after nearly 5 years, I'm only now really learning how to be a mother. I appreciate the little things like I never have before. Nothing is taken for granted. Although it feels like everything this year has revolved around Kingsley, that's not really the case. It's definitely revolved around my family, all of us. We've all grown and changed and become so much closer. I adore my little family. I think I may look back on this year as one of the most influential in my life.

Here are the most memorable events:

JANUARY: Well, no question, it was Kingsley's arrival. His diagnosis rocked me in 2009 and his birth just changed everything. He filled the void in our family that we didn't even know was missing (I am just full of cliche's, forgive me!).  He completed us and made us better by showing us his strength and beauty. I didn't know the true meaning of the word AMAZE until I met my little King.

FEBRUARY: this may seem strange, considering January's highlight, but the Olympics were the best part of February. I have never been more proud of my country or of being a Canadian. There was something so unifying about the Games. Everyone was watching. Everyone was cheering. Everyone was singing. I get teary just thinking about it!

MARCH: this month will always be for my first baby, my lovely Rachel. She turned four years old in March and seemed to turn into a little lady before my eyes. She has grown so much this year and the pride I have for her is unbelievable. This month also marked a new milestone for me as a mother: my first experience with the flu. That was disgusting. I am not a puker and prior to March, my girls had not been pukers either, so my experience with this sort of thing was limited. One night of Jeff, Rachel, and Cordelia taking turns throwing up every 15 minutes was one night too many. By some miracle, Kingsley and I avoided getting sick. So. Gross.

APRIL: I feel like April was when I really resolved and accepted a lot of things within myself regarding Kingsley's diagnosis and the previous year. At three months old, I finally felt like I could relax and just breathe. My baby boy was doing fine, the weather was shifting, life was awesome.

MAY: When I think of May, I think of being outside with my three little angels. How heavenly! We spent so many warm days out in the backyard, I thought that was how our whole summer would be. I also started running and moving on from my c-section. My sweet little Cordelia turned two years old.  It was a great month that I wanted to last forever. Sadly, (or not, depending on your preference), the weather shifted the next month and got unbearably hot and we spent a lot of the summer inside avoiding the humidity. :) Gotta love Ontario!

JUNE: My sister came home! And brought my two little nieces with her. I miss seeing them grow up in front of me, so I cherish any visit we have. The cousins love spending time together. We has a whole week at the beach, which is something we definitely have to make an annual event.

JULY: Kingsley was baptized! We had HVPI coming regularly by then, it was very hot, Rachel took swimming lessons and Kingsley started solid food. I started toilet training with Cordelia, so I think that pretty much consumed us.

AUGUST: Another month of heat. We had a disastrous three days in Toronto.  :) Kingsley had stopped progressing physically this point and I started to realize it.

SEPTEMBER: Rachel started school! September seems to be a rotten month for me. We had the anniversary of King's diagnosis commemorated with finding out that he was not going to walk and no one could provide us with answers as to why he wasn't doing more with his legs. Not a gold-star month around here.

OCTOBER: the highlight was my niece Kamille coming to visit! Cordelia, Kingsley and I were doing playgroups and support groups and swimming lessons and I was trying to figure out what was going on with Kingsley - torn between accepting and fighting.  Luckily, I chose the latter. Halloween was a ton of fun with my little girls.

NOVEMBER: Answers! Surgery! And the start of our Christmas season.

December: All fantastic-ness. Kingsley came home, the girls were SO into the Holidays, time with family and friends and just so much joy.

What a year, indeed. I love that it started and ended so well and that in between, there was a lot of laughing, snuggling, tickling, and smiling.
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