Homecoming Remembered

A year ago this week we found out that if the boys behaved well just a little bit longer, they would be coming home with us in a few short days! Our wonderful pediatrician gave some thought to the advice of one of the senior nurses who said the boys needed to be home with us for easter. The target was set for Good Friday.

Off came the monitors, and so began crazy preparations including car seat tests, a sleep over at the hospital and tons of last minute stuff at home. We had 5 months to do it but suddenly it was REAL! They were coming home.

This time, one year ago, was a very very happy one for our family.

Matchy Match

The boys are so seldom dressed identical that when they are it requires photographic evidence. In these photos I think they look incredibly different. In fact I think Asher looks like me and Nolan looks like Jordan.

This photo below is one of my all time favourites of them because they look SO identical. It's also the only other photo I could find of them dressed the same. Can you tell who's who? (They both look like Asher!)

Mom Rehab

Moving along...

Every post can't be about Asher and CP now can it?! Let's get this blog back in order and start talking about some of the rest of us!

We're back from Vancouver refreshed (well exhausted to be truthful!) but we had a fantastic weekend that was good for the soul.

Now onto the business of actually sharing some of the writing from my writing class that I have promised a few times and then never gotten around to - here is installment number one. A month or so ago in one of our class sessions we began talking about the idea of "Mom Rehab".  Our teacher knows the editor of a website for momsand pitched an idea to her for a story on the subject. The editor was totally on board and asked for us all to submit something and she would pick her three favourites and run them as a series. I unfortunately, was not selected (congrats to my classmates who were!), so instead I will share mine here.

A Long Week

Needless to say, it's been a long week. Emotional and busy, but thankfully, it's over.

Asher had a great PT/OT session today. They brought us lots of new gear to try out with him and we had a good chat about Monday's appointment (both of them were at the appointment with us). It was nice to hear their take on things and to have so much positive feedback from them. It helped to talk things through with them since they too know Asher so well and have such a good handle on his capabilities.

Tomorrow we head to Vancouver for a much needed weekend break to visit friends. Our past two attempts have been cancelled due to sicknesses (surprisingly theirs, not ours!) so it must have been fate that our successful visit (knock on wood!) falls on this weekend when we need to spend time with good friends!

Next week will be a better week. It has to be.

Support

Unfortunately, we've had enough times of need in the past two years to show us who our true friends are. This one's for you.

You've said something, you've reached out. Maybe it was awkward and difficult, but the content of the message is not what matters, it's that you've offered a shoulder to cry on when it was probably easier to say nothing at all. You've sent your hugs, your words of comfort and sometimes a bit of advice. You've told us you've been through it and come out the other side, still mostly whole. You've said you have no idea what we're going through but you love us and will help us through anything and everything we need. You've said we're positive and strong and that helps us believe it about ourselves. You've assured us we're going to make it.

It's not what you've said or done, it's that you've said or done something.

Maybe you're an old friend, maybe you're a new friend, maybe you're a family member, or maybe you're someone we haven't even met yet in person, but all of you know who you are. Please know that your kindness and friendship is appreciated. Having hands to hold on this journey means more than anything. Give yourselves a pat on the back for being good friends.

xo

Diagnosis, Not Definition

The past couple of days have been hard. Harder than I would have expected, given that we knew this was coming. We have been told by families who have been through this that grieving the diagnosis is normal...prepared as we thought we were.

I am going to keep repeating to myself that "CP is Asher's diagnosis, not his definition".

We will NOT let this define him, it will only be a part of him - a small part.

The important parts - the real parts that define him - will shine.

If you ask Rio how she can tell her brothers apart, she will say that Asher's eyes are smiling.

THAT is what defines him, not CP.

Disclaimer: No he's not a maniacal vampire. Only blueberries were harmed in the taking of this photo. (Another oldie, but one of our faves).

Diagnosis

I'm not going to beat around the bush about the results from our appointment today.

Asher has Cerebral Palsy.

Cerebral Palsy is a non-progressive brain injury. The damage was done when his brain hemorrhaged shortly after his birth and it has not worsened since; however, as he develops, we will see more and more of what he is capable (and incapable) of doing.

This diagnosis is not a shock to us, I promise you. I'm sorry if it is to you, but the signs have all been there and we have not hidden them. Since his problems at birth, we knew this was a possibility. At a couple of months old, we realized it was probable. In the past few months, we accepted that it was inevitable. We knew that this diagnosis would come at today's appointment and we were ready for it, as ready as you can be anyway. I am tired of telling people he is delayed or has "muscle issues". I am ready to make people aware.

Asher is not delayed - delayed implies he will catch up. He won't. With continued therapy he will improve his skills, but only time will tell how much. His right arm is very weak, his left arm is less than ideal, and his legs are tight, but hard to tell how much function they have. Currently, our biggest concern is his core. He is very floppy, still nowhere near sitting.

Until he is two years old he will not get an official diagnosis of type of CP because the doctor wants to observe him and see how he progresses in that time. She does want to send him for an MRI as he isn't "fitting the box" of typical CP patterns, making his type harder to diagnose. She thinks he may have Athetoid Cerebral Palsy, characterized by fluctuating high tone (tightness/stiffness) and low tone (floppiness), however he isn't showing some of the other symptoms of that type, namely issues with talking and swallowing. The damage shown on the MRI will help her with the diagnosis and in turn, treatment.

At this point, she put him at a 3-4 out of 5 on a severity scale. 1 is the best - minimal problems, and 5 is the worst - in a wheelchair with no speech and head control. Knowing she has absolutely no way to predict the future, I asked her what a 3-4 means. She said walking with a walker and maybe a wheelchair for long distances. The best indication of walking ability is sitting by age 2. That gives Asher almost a year (corrected), so that is our first goal.

You're probably thinking this is all pretty crappy, right? Well yes, I suppose it is. But here are some positives to count on:

• Everyone feels confident that Asher is not congnitvely impaired in any way. He is smart as a whip, social, happy and completely in tune with people and his surroundings.
• He has proven himself a miracle many times over. Why not again? Not saying he is going to come away from all of this "cured" - not at all. But saying maybe that 3-4 out of 5 on the severity scale turns into a solid 3, edging closer to 2. That can happen, right?
• He is motivated. That cannot be taught. As long as he has the will to try, his possibilities are endless.
• He has all the therapy he can take advantage of and we are doing everything right. Nothing will change because of this diagnosis. If anything, the answers can only make life better from here.
• He is loved and supported by more people than we can count.

So please do not think of it like this is the worst news we have ever heard because it's not. The last thing we want, for Asher our ourselves, is pity. Certainly not to our faces, nor behind our backs. Asher will have to work harder, without question. We all will. But we will all be better, stronger people for it. We are going to raise three kids who see the world with a lot less prejudice than the rest of us do, who are more empathetic to others, and who have strength that I have no doubt will amaze me daily.

We are blessed, CP and all. It may be Asher's diagnosis, but it is not his definition. He will do great things, mark my words.

Neuromuscular Clinic

Today Asher meets with the physiatrist at the neuromuscular clinic.

We are excited. We are scared.

New therapies, bad news, good news?? We're not sure what this entails. Probably a little bit of each.

I'm emotional, but am looking forward to moving along with things...

Sleep Nonsense

This morning the strangest thing happened to me. I woke up and Rio was in our bed and I had no recollection of her getting in. To make matters worse, she was on the outside of the bed and I was crammed in the middle between her and Jordan, telling me that I really had no idea what was going on (I normally put her in the middle as I am scared of her rolling out of our super high bed onto the hardwood - you know, similar to what I let her baby brother do in the light of day).

This is weird on so many levels. Not that she wakes in the night very often, but when she does she either calls out to me from her room, or I hear her paddling her little feet down the hall and I cut her off at the pass, hoping to send her back to her own bed. So you can imagine my surprise when I found myself in this situation this morning, not remembering either of those two things happening.

When we got up for the day, I told Jordan how I had no memory of any of this so she must have just climbed in and pushed me over. Jordan, however, told me that he woke in the middle of the night to Rio and I conversing at the bedside. WHAT?!

Ok I have been known to sleep talk and sleep walk many, many times. But I always remember it in the morning; in fact 99% of the time I wake up mid way. (No I have never left the house or done anything embarrassing). The fact that I not only slept right through it but also don't remember any of it is giving me the creeps. Apparently someone needed a good night's sleep!

Happy St. Paddy's Day!

Busy St. Patrick's Day! We started with bright green waffles (thank you very much!), followed by a therapy session for Asher, a trip to the petting zoo, and my last writing class (boooo!). I managed to get a couple pics of the kids dressed for the occasion although it's getting harder and harder to get them to all look at the camera!

Nolan "snuggling". Asher's really impressed.

MUCH happier now that my brother isn't on top of me!

If only we were ending the day with some green beer out at an Irish pub. Oh the good old days...

Cute Suit

Yesterday Rio came out dressed like this:

Which was hilarious, because this is how she used to look dressed in the same outfit:

Years, where have you gone?

Let Them Be Babies

Recently, Jordan and I have taken a step back and evaluated some important aspects of our lives, primarily Asher's therapy.

First off, let me reiterate that we are still incredibly thankful for the therapy we receive. We are truly blessed that we have someone coming to see Asher in our home, at least once a week, giving us exercises, toys, feeding implements and various other gear to make his life easier. The ladies on his team are angels and we can't thank them enough.

It's how we ourselves have been treating his therapy that we have re-evaluated. From day one, his PT told us not to put too much pressure on ourselves - to only fit his therapy in when it worked and if some days that meant not at all, so be it; to always remember we are busy with two other kids, and forgive ourselves that often times it's just about getting through the day. Our entire team has complimented us repeatedly on what a good job we are doing with him, and how much we get it, yet I have never really believed it.

In my mind, I have never done enough. Any moment that I am not otherwise engaged with Nolan or Rio, I should be down on the floor with Asher. I shouldn't take any time doing silly things like housework, updating the blog, or worse, checking facebook, I should be completely focussed on him. Any "me" time should come when the kids are sleeping and ONLY when the kids are sleeping. Needless to say I don't live up to my own standards, and that is a lot of guilt to carry.

But recently, we have come to the realization that if Asher isn't doing therapy every waking moment of the day, that's ok. He works SO DAMN HARD at everything he does, it's ok to let him just "be" sometimes. I think the moment of clarity really happened when my very wise friend pointedly asked me why we were working so hard on teaching Asher (and Nolan) to spoon feed themselves at only 13 months of age, when "typical" babies, wouldn't master that skill for months yet. A light bulb went off in my head and I asked myself what all the rush was.

They're not meeting some of their milestones, so what. Nolan is getting there, most of the time right on track (ok so he didn't sit till 12 months corrected - he's there now!). Asher may never meet some of his milestones, but that's just the way it is. As much as therapy helps, I can't continue to beat myself up over what the boys, or me, should or should not be doing.

So suddenly, it's become ok that both boys still bottle feed and aren't ready to take their milk in a sippy cup; it's ok that we put Asher in the forbidden exersaucer (the worry is that it will increase his leg tone) for 10 minutes a day because he LOVES it and uses his otherwise awkward arms sooo well when he is in it; it's ok if we don't make either of the boys eat with a spoon...yet.

It's all ok because they are still babies. These are the last babies we are going to have, and considering we got completely shafted on the first five months of their lives, we're not in any hurry to turn them into little boys before we can milk the baby stage as long as humanly possible.

This realization has taken nearly a year to come to, but it feels good. I can't say it doesn't still come without guilt, but at least I am now accepting of the fact that I just want to let them be babies, and there is nothing wrong with that. We will continue to embrace every therapy we have available to us, but hopefully let go of some of the guilt around it.

Back Aches and Bottles

I am writing this post flat on my back. Some over-zealous yardwork has thrown my back for a serious loop and without the aid of a constant stream of Robaxacet, I have been rendered completely useless. It sucks! I've had a bad back for years, but this current episode is my worst yet. Thankfully Jordan is on days off (Does being a mom mean you have telepathy to schedule your "sicknesses" only for times that are the least inconvenience to the family? Jordan was off work when I had the stomach bug too). Anyway, this has given me an excuse to work on my writing class and to re-visit some posts that have been sitting half written for ages, the one below included.  

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The boys always eat at the same time, so whenever there's only one parent available we tandem bottle feed them. The overstuffed chair and ottoman in their bedroom that were supposed to be perfect for breastfeeding have been a God-send for bottling: boys in either corner of the chair, mom or dad on the ottoman. I particularly love their first bottle of the morning because they are so hungry and focussed that they pound it back and then they sit quietly staring at me, milk drunk and smiling.

I am in no hurry to have them give up bottles and in turn, this routine. It is one of the few times in the day they're actually calm! The way that tears run down their faces because they're concentrating so hard they're not blinking, followed by the way the look at me afterwards - melts my heart.

Old photo. At this time today I was lying in bed chugging back Tylenol like candy.

Happy Friday! Have a great weekend!

Middle Name Pride. What?

An online magazine I subscribe to showed up in my facebook newsfeed today telling me it's "Middle Name Pride Day" today. Seriously!?! Is there a day for everything? This is a bit ridiculous. I certainly have no pride in my middle name. No offense to my parents but my middle name is lame. Mine is LYN. As in missing an N at the end. Come on.

I do however have a lot of pride in my kids' middle names. They are all named for a grandparent, great grand-parent, or sibling. Check out the explanation of my kids' names here.

Happy Middle Name Day! Please comment and tell me yours!

Spring Has Sprung!

We hope. It better not snow again!

Jordan is off so we took the opportunity to head outside while three kids slept (don't worry, the baby monitor came with us) and start tackling the yard. Having a huge yard is a great thing, but wow is it a lot of work come spring time.

In no time Rio was up and helping us weed, rake and cut. We made a serious dent in the front yard, although now it's pretty threadbare and waiting for a bunch of new plants. My work horse of a husband is currently out shoveling the driveway. Not snow. Moss. It has been driving me crazy that our driveway looks like it's covered in green shag carpet. Although we don't use the driveway often, we look at it out our front window and it has been the bane of my existence. No more! I have been standing in the window staring at him. I know he thinks I'm being a back seat driver, but really it's because I'm jealous. Nothing like some good yard work to make you feel gratified and like you really accomplished something.

Next we tackle the back yard. Oy.

Happy Spring All!

More Rio Cuteness

Since I posted that video of Rio and Jordan earlier today, I went back and found this. Some of you have seen it before, but it's over two years old so pre-dates this blog. Thought I'd post it here because it's really too cute to not share again.

You Belong To Me

Jordan loves the movie "The Jerk" starring Steve Martin. So it's only natural that he take Rio's ukelele as his own and learn the signature song from the movie. Rio has learned the words and now they sing it all the time. Normally Rio sings much louder but she was distracted by her brothers. This is pretty cute though, make sure you've got sound!

What the Momoir Project Means To Me

I haven't posted any of my writing from this session of The Momoir Project yet, as I was hoping some of the sparks would turn out to be something publishable. I have decided not to pursue any of them in the state they are in, save the one that my teacher requested for her blog (She is actually publishing two more - another from last class, then one from this class. I will link here when they are posted). It's not that I am unhappy with my writing - just the opposite. It's just that these don't really fit the places I would like to submit to so they will probably go no further than here unless I decide to rework them into larger essays later. The end of class is coming soon, so I will start posting them then.

I went back and re-read a bunch of my work from the first session in the fall and I was surprised at how much I have improved. The one piece that I was too scared to post here (about our loss) I have basically pulled apart and re-written, much better second time around if I do say so myself. I have really learned to be more descriptive in less words, feeling like my writing now packs a bigger punch. Anyway, I am submitting that one to a magazine for a special themed issue and if it isn't accepted I may try to re-work it again as I am now comfortable discussing the subject. Not only have I gained confidence in my writing, but in my ability to share my most difficult stories.

Anyway, as I ramble, there is a point to this post. Yesterday was our teacher's birthday so my classmates and I gave ourselves a short informal assignment (included below) as a tribute to her to let her know how much we appreciate her and our class. If you're interested in learning the craft of momoir writing yourself let me know - I can share a coupon for The Momoir Project with you! I promise you you'll love it!

What The Momoir Project Means To Me

I'm still not sure how I found out about The Momoir Project. My husband claims it was he who suggested it, but I think he's just trying to take credit for this amazing addition to my life. When I timidly signed up for the online class I thought I might learn some helpful tips about "momoir" writing and give myself some purpose outside of being a newly turned stay at home mom. But I really had no idea what I would learn about motherhood and life in general.

I am writing with a diverse group - a range of ages, careers and number of children - geographically spread across North America. The things they have written have made me laugh and cry, and the advice they have given me has been invaluable. We are smart, funny, understanding, and strong women. Each of us in our own way bring unique experience and value to the class.

Every week I look forward to not only our assignments, but to our class time where we chat in a blog forum like old friends. My writing has improved, surely. Our teacher Cori is amazing and offers constructive yet encouraging critiques. I have learned many lessons about the art of writing a good memoir and hopefully some tips that will lead me to be a successful, published writer. But more importantly, with every story written and read, I gain confidence knowing that my fears, joys, defeats and triumphs are shared. I am writing stories that I previously did not have the strength to tell, knowing the response will be as supportive as if I had known these women my whole life.

At the risk of sounding ridiculously cheesy, The Momoir Project is truly a blessing in my life. I am not only a better writer, but a better mother and friend because of it.

Never Say Never - Bookshelf Edition

When Rio was a toddler we had friends, also with a toddler, comment how "lucky" we were to have bookshelves in our living room. They told us they could never have bookshelves - their child was too much of a menace and would not leave them alone. We responded (in a holier than thou tone no doubt) that it was our choice. We were not willing to give up our bookshelves just because we had a toddler who pulled books off the shelves. We would simply ask her not to, pick them up and put them back on the shelves, and that would be that.

Fast forward four years to a different baby. Look in the dictionary under the word menace and you see Nolan's evil grin staring back at you. The kid is into everything. EVERYTHING. He not only pulls the books off the shelves, but then he sits and rips the pages out one by one, either eating them, or tossing them aside to move to a new book. The living room was a constant disaster, and we started worrying that he was making the shelves too top heavy (within literally seconds entire shelves would be empty) causing way too much of a hazard.

So wouldn't you know it, the bookshelves have been moved to our bedroom. He is never left alone in there, so it was the safer, tidier thing to do. We actually prefer it this way. Not only does Jordan like the look of our bedroom better, but there is now an entire living room wall to store toys up against! Better on one wall, out of view from some angles, than stacked in, around and on everything else in our living room!

Hanging out amongst their loot. Asher where the bookshelves once were...

If only we could Nolan-ize the rest of the house. Until now, closed doors and baby gates will have to do!

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After I hit publish I noticed he was beside me pulling out our alphabetized CDs and one by one tossing them on the floor. Awesome.

Good Physio

Some days, physio is hard. Really hard. Asher is unproductive, uncooperative, and grumpy. We try to review what he's been doing since our last visit and he wants nothing to do with it. It makes me have my usual crazy thoughts of "he's never going to sit/crawl/walk" and I am in tears the second our PT walks out the door.

Today, however, was fantastic. Asher beamed from ear to ear when she walked in, and from that moment it just got better. He was loose, he was motivated, and he worked hard in every position we had him in. We had a good chat about new and interesting ways to try to let him play on his own (not being able to sit or crawl makes life incredibly frustrating for him). We also had a great chat about our meeting with the physiatrist (doctor of rehab medicine) later this month, and came up with an informal plan of what we are going to focus that meeting on. I am really excited to talk about the future and further therapy options.

Once again, I was teary when she left, but good, hopeful tears today. Maybe one day he will sit, crawl, and walk. It's going to take some time and a whole lot of effort by all of us, but today it doesn't feel so daunting.

God do I love that little guy. He's my hero.