And on that Hallowe'en note, not to forget our gorgeous fairy who is almost ready to hit the streets with daddy while the boys and I man the front door.
She loves her costume and is so excited to get out there, rain or shine.
Not sure if I can say the same for the boys. We'll all head to the neighbourhood firehall for their haunted house - if it's not raining. The boys' entire costume will wash off if they get wet!
A very happy hallowe'en in our house today. Have a fun and safe night!
The younger twin, the superstar, the faithful assistant.
Born three years ago tomorrow, barely alive, this Henrik and Daniel will not grow up to be NHL all stars. They will however, inspire the masses and are already heroes to many. They have been through more in their short lives than most have in a lifetime. And did I mention they love the Canucks so it was a no brainer to do them up for Hallowe'en as their (ok our) idols?! I think the real Henrik and Daniel would be proud to have these two as fans, and the admiration would be mutual.
Happy Hallowe'en from our favourite identical twins, dressed up as our second favourite identical twins!
We're out at the pumpkin patch, the weekend before Hallowe'en, and it's busy. Rio is off running ahead and Nolan is trying to catch her, stumbling a little bit but mostly keeping up. Asher is back with Jordan and I, in his chair.
We get to the front of the line for the hay ride. Rio bounds up the wagon and then turns around to help Nolan make the climb. Jordan and I step back for everyone pushing in front of us, somehow not realizing we too are waiting our turn. Rio and Nolan try to hold an appropriate spot for us to all fit. When there is a small break in the crowd, Jordan and I lift Asher, chair and all, onto the wagon without a ramp. He's heavy, and it's not easy. When we finally sit down, Jordan and I let out a deep breath and wipe the sweat off our brow, looking at each other with an exasperated smile. The kids are all chatting a mile a minute.
I look around the wagon and some people smile and nod at me. Others look at me with pity, and many avoid my glance. A little boy around Rio's age, quietly says "What's wrong with him?" to his mom, but we can't help but overhear. Looking embarrassed, the mom tries to answer but Rio does it for her. "His brain got hurt when he was a baby and his legs don't move like ours". "Oh" says the little boy matter of factly, as he smiles at Asher. I grab Asher's hand and give it a squeeze and he gives me a knowing look, telling me he's ok. I mouth "thank you" to Rio and she smiles proudly.
We take our wagon ride and enjoy the sites of the orchard. The kids finish eating the bright orange sugar cookies we got when we entered, and are anxious to get down from the hay ride and explore. When the wagon stops, people this time realize we need some room, so everyone steps aside. A young dad with his wife and baby, chatting with us on the wagon, offers to help Jordan lift Asher off. I let him. Asher is getting so heavy for me that it is nice when someone stronger is around.
We thank the couple for their help and make our way through the orchard. We walk through the corn maze and everyone gets immediately bored and frustrated, so we cheat and cut through. Rio and Nolan ride the overpriced train and Asher screams and laughs every time they come around the corner and wave at him. The kids get their faced painted and are given balloons. We buy them some popcorn and hot apple cider to try to extend the trip, but before long, everyone gets cold and antsy so we pack up to go home. Another successful outing.
I wish this adventure actually happened. What I look forward to is one day being able to live out this scene, not just imagine it. Not being scared to try new things because life with children with disabilities is difficult. Not being so terribly afraid of those awkward stares, whispers, or questions. Most importantly, accepting that this is our life, disability and all, and we're not going to let it stop us from anything we want to do.
One day, I'm confident that will be us. We're just not quite ready this year.
***
Thanks Ellen for the "What I look forward to" prompt and linkup. I usually post these on Fridays, but we have so much going on this week with birthdays, a birthday party, and Hallowe'en that I'll have plenty more to post about. Stay tuned, you won't be disappointed!
Rio's baby book is full from beginning to end. The first time she sat, crawled, talked, walked. Her first wave, her first clap, and the date she cut every single tooth. There are very few questions Rio could ask me about her infancy that I couldn't readily answer by flipping to a page of her baby book.
The boys' books are the opposite - pretty much empty. Yes, every mother agrees that with your first baby it seems so important to record every detail, and with the second, third, and so on, you just don't have the time or the energy. But with the boys, it's not the lack of time or energy, so much as the conscious choice not to record those things. Waiting for a date for sitting or crawling or clapping or talking caused stress and pressure. Not recording those things when they happened (or in some cases haven't ever happened) has been freeing. The specific time and date of milestones just doesn't matter any more.
If we want to talk about detailed baby books, I suppose the boys' could be replaced with the spreadsheet I kept from their time in the NICU. For each boy, I have 152 days worth of everything they did. Their exact weight in grams each night. How many hours they breathed for on their own on a really good day, and the settings of the ventilator on a really bad day. Any accomplishments (sadly lacking) and setbacks (sadly prevalent). I've got it all.
The type of milestones we care about changed for them too. We're not waiting on "first steps", we're waiting on "walking consistently without falling" in Nolan's case. We're not looking specifically for "crawling", we're hoping for "any type of floor mobility" in Asher's case. We weren't so excited about what their first words were, so much as we were that the ability to talk even existed. First foods? Didn't matter, we really just cared that solid food could be chewed, swallowed, and digested without complications.
We revel in every single inchstone. Everything the boys accomplish is truly a miracle and we don't take anything they do for granted. We don't care when or how they get there, it is the challenges that they have continued to overcome that matter. And when there are achievements to celebrate, you can bet they are all the sweeter.
Three years ago I was on bed rest, trying to cook my 24 week babies a little longer. Truthfully, a lot longer. Although complications had arisen, my doctor and I were confident I would carry the boys well into the mid thirty week range if I stayed flat on my back. Well isn't destiny a cruel vixen sometimes, because that certainly wasn't what was planned. I am however, incredibly thankful that for those fated 2.5 weeks that I was on bedrest, I followed the rules. I was the model patient and am so happy I don't live with the guilt of being anything but.
Looking back at that time, and specifically this photo, I am SO incredibly proud of how Jordan and I reacted. Ok specifically Jordan. Sure, I was probably bossing him around, but he was the one that had to do all of the work. If you've been reading the blog since the beginning, you've seen this picture. But when I looked at it the other day it didn't make me sad, just the opposite in fact. Looking at this picture and everything in it made me smile.
Let me give you a run through:
The table next to the bed was built by Jordan in one afternoon. It's nothing fancy but it fit perfectly, giving me everything I needed close by. That table then lived in the same spot for my pump. When I retired the pump 14 months later, I was sad to see the table go. That table holds so many memories I don't think we'll ever be able to get rid of it. Currently it holds all of Jordan's art supplies in our rec room.
On top of the table are the following: A water bottle, remote controls, prenatal vitamins, hand sanitizer, tums, a prescription (I'm guessing antibiotics to ward off infection from the cerclage - lot of good that did), chapstick, my cell phone, my ipod, three kinds of lotion, and one last bottle that I can't identify. Pretty much anything I could have needed at arms reach.
On the bottom shelf of the table are the following: an extra blanket (in case I got cold and couldn't get up to turn up the heat), a tea towel (to lay down on the bed when I ate because I wasn't allowed to sit up so my "dinner table" was in fact my mattress), and a sheepskin. Why the sheepskin? Did we think I would be in bed so long I'd get bed sores? Not sure about that one.
Behind the table on my bedside shelf, was a collage of pictures of Jordan and Rio. Awww. Those were on my desk at work, then moved to the hospital when I had my cerclage, then to my bedside on bedrest, and then back to the hospital when I had the boys. While that collage has been dismantled, all of those photos are still in our bedroom.
Guest chairs for all of my company. I had a lot. I couldn't expect everyone to cuddle with me, although a lot of my girlfriends did.
A bar fridge, stocked with any meal that Jordan prepared ahead of time if he was at work and I didn't have a visitor coming to feed me.
On top of the bar fridge - dishes (so neither I nor a friend had to go looking for them), crackers for a snack, and a box of cereal.
A stepping stool, hidden from view in this photo. On the same day Jordan built the table, he ran out to buy the stool. Our bed is quite high - something that didn't bother me at all prior to this. But we didn't want me exerting any effort when I got in and out of bed, so the stool was a necessity.
Lastly and most importantly, my most favourite "accessory" is lying in bed with me in this photo. When I look back on this time I cannot believe how well Rio did. She was so often away from me because I couldn't be left alone with her in case she needed me to get out of bed. So when she was home, she spent as much time as possible with me. It used to break my heart listening to her and Jordan eating meals in the kitchen while I laid in bed on my tea towel placemat, but then as soon as it was over she would come running in to check on me. She loved serving and cleaning up and doing everything she could to lend a hand. And I loved having her lie with me and tell me about her day and all of the things I was missing out on, outside of the four walls of our bedroom.
Three years removed from this horrible time, I am glad that I am starting to see some good out of it. Gives me hope that one day, the boys birthday will be accompanied by only one emotion: happiness.
Sometimes I get in a lull with this blog. The inspiration comes in waves, where sometimes I have so much to say and other times I've got nothing.
Right now I've got nothing.
Sometimes I'm lucky enough to have a folder full of drafts, so you my readers, have no idea this lull is happening. Now is not one of those times.
Ok that's not true. I do have a folder full of drafts, but some of them are hard to write and I'm tired of working on them, and with others I've just lost interest.
Really I've just lost my mojo a bit. I'm tired, we're busy, and we've got a lot going on. Plus it's those days that lead up to the boys birthday and they really suck. Memories of surgery, bedrest, labour and their birth? Not good. Easier this year than last, but still not great to re-live.
So instead of anything profound to say, I'll give you a few tidbits of what's new around here:
Rio is learning to read. It's so cute and we're really proud of how well she's doing. She absolutely loves grade 1, her new friends, and her teacher. She has lots of play dates and is a little social butterfly. She is a 6 year old teenager.
Asher and Nolan never stop talking. Ever. Unless of course you're a stranger, or a doctor or therapist trying to measure their progress, then they don't say a word. But if you've got them when they're "on" they are absolutely hilarious. They have been talking to and about each other a lot, which melts my heart. They make each other laugh all the time, and have a few silly inside jokes that they think are ridiculously funny and I'm not sure they even know why.
Nolan has become incredibly helpful to Asher. If Asher drops something, Nolan literally leaps off his chair to get it for him. I see glimpses of the twin relationship I had hoped for, even if it's different than I had imagined.
In addition to all of this positive stuff, they also fight. Asher has realized that when they are in the double stroller he is in the perfect position to pull Nolan's hair. To combat this, I get them to hold hands and it usually does the trick. I wonder how long it will be until Asher wises up that I've conned him? Otherwise, Nolan too can be a bit of a bully, plus they yell at each other. All three of them. A lot. This house is a circus most of the time. It's amazing how much I can tune out their noise.
Jordan is still working two jobs (the jail and teaching in the nursing program). It's keeping both of us busy and tired, but he is really happy doing both. We are so thankful for his opportunities.
And me? Well you know, same old same old. Hence the lull. Nothing is EVER new with me.
So there you have it. This post buys me a couple of days till I need to come up with something to say again. In the mean time, I will pray to the gods of inspiration.
It's a giant piano on the floor. If you were a child in the 80s, you'll envision it easily when I tell you it was just like the one in the movie Big. Without knowing how much I want to slide across it, Rio and her friend have the same impulse.
Rio starts to run but immediately slows down because there is a little girl kneeling smack dab in the middle of the keyboard. Barely fazed by this, Rio cuts quickly around her. On her next pass of the keyboard, Rio comes a little closer to the girl and slows down even more, but not as much as I'd like.
"Rio, please be careful of that little girl". I say it loudly enough for Rio to hear but also for the mother's ears, standing close by next to her stroller.
On the third pass and a louder "Rio be careful!" I begin to get annoyed. "Get your kid out of the way" I think to myself.
But as soon as the thoughts come to my mind, I realize my blunder. Without even looking back at the daughter or the mother I know I was looking at them with my old, untrained eyes.
Just like that, my new eyes really put things into focus.
The little girl, at least as old (or as tall) as Rio is w-sitting. Typically developing kids as big as she is don't w-sit. It's uncomfortable and not a natural position once your hips lose their early flexibility. She is propping on her arms and hasn't moved for several minutes, despite the fact there are children running back and forth around her. I then look over at mom and the "stroller" she is leaning against is not a stroller, it is a wheelchair. Sure, a very cleverly disguised wheelchair like Asher's, but unmistakably a wheelchair if you look closely.
These new eyes of mine, they let me see things that not everyone gets to see. With my old eyes, I may have just been annoyed by a little girl in the way, with a mom seemingly oblivious. Instead, I see a little girl enjoying herself, despite the fact she can't run across the piano. And I see a mom, tired but smiling, quietly taking it all in.
We should all be able to say "If I knew then what I know now" about certain experiences in our lives, because we are supposed to be growing to become better people. I believe I have matured as a person care of everything I've been through - good times and bad, failures and successes. But because of Asher and Nolan, I have slowly begun to see the world through new eyes. Sure, I still make mistakes, I always will. But more and more often, I am seeing things much more clearly.
***
Thanks Ellen, for the "If I knew then what I know now" writing prompt. Also, in case you haven't noticed, I have been doing this every Friday and plan to continue. Ellen sends out the prompt over the weekend and then posts her own blog. I work on it during the week and then link up on Friday. Similar to when I was in the my Momoir class, I don't read anyone else's until mine is complete so my own writing isn't influenced.
As a parent, there is a fine line between enabling and coddling; giving your child the supports they need, while letting go enough to let them figure things out on their own.
I am a control freak, admittedly. So "letting go" as a parent is something I struggle with. How fitting that my baby who needs me most is the one I need to work on letting go of.
Jordan and I are very conscious of letting Asher do things for himself, but that's hard. He needs to much help and truthfully, it's often easier to do things for him. But just because it's easier, it doesn't mean it's right. In fact, in my opinion it's not helping him at all. I want Asher to be as self sufficient as possible, and more importantly, to believe in his own abilities.
I was talking to someone a while back about the Olympics and the inspiring stories that come out of it. This person knows about Asher and mentioned the interview she saw with Oscar Pistorius' mom. Apparently, Mom said matter of factly that when his brother would wake up in the morning and she was rushing them out the door, she'd say to Oscar's brother "Put on your shoes!" and to Oscar she'd say "Put on your legs!". No differences, simple as that.
In a likewise inspiring story from the olympics, I saw an interview with multiple medalist Adam Van Koeverden's mom. While Adam is completely able bodied, his mom inspired me in a different way than Oscar's. She said that when Adam got into kayaking and was taking it really seriously, he started having regular early morning practices. She would take him to whatever practice he needed, on one condition - he had to wake her, not the other way around. She said if she was the one waking and nagging and rushing him out the door, it was about her. If it became Adam's responsibility, it showed he really wanted it. Clearly, it paid off.
All kids, able bodied or not, have many many abilities. While there are things that Asher can't do, and things he needs help with, there is very little he needs us to completely do for him. More importantly, there is much he can do completely on his own.
Learning to enable without being an enabler...a work in progress.
Update Feb 14, 2013: When I wrote this post, Oscar Pistorius had not been accused of murder, as he is today. Clearly I would never have included him as a role model if he had been. That said, I like this post so am not going to change the reference to him, especially since it is about his mom. Very sad and disappointing news.
I was sitting on the grass of the soccer field, watching Rio practice. Jordan was at work, but a friend had generously offered to watch the boys so I had the luxury of going by myself. Luxury it was. I sat quietly alone, but waved hello to the mom of Rio's friend. We didn't know each other well, but saw each other around the playground at kindergarten, and now our kids happened to be in soccer together.
She came over to sit beside me and we immediately engaged in conversation, not paying much attention to the kids on the field. She was very sweet and friendly and we hit it off. She is hearing impaired, so I was trying to balance my concern that I was either talking too quickly so that she could't understand me, or talking too slowly and loudly and making us both feel silly. I assumed she was reading my lips so I was sure to be facing her straight on, and looking her in the eye.
Herein lies the problem. I am not very good at making eye contact at the best of times but I was eased a bit because I'm wearing sunglasses. We busily continued chatting about the kids and she asked how the boys were doing. "Good" I said, and thought we were done. Then she paused, and I knew immediately by how awkward her pause was, what was coming.
"Do they....umm...do they...have....trouble...walking?" she asked tentatively. "Well....." I started.
And what came after that "well..." surprised me. It wasn't because I thought she was rude and uncalled for - the opposite in fact. I actually thought it was very kind that she thought to ask and I appreciated her concern. But it rattled me.
I cried. Of course I did. I kept telling myself she couldn't see my tears through my sunglasses, which was ridiculous, especially because I was wiping them away after they pooled under my lenses. But aside from the crying, it was as if I lost the ability to speak like an educated adult. Some sort of blubbering about prematurity and gross motor delays came out, followed by a lot of reassurances that they're happy and healthy. And then we changed the subject. Where were those handy words "Cerebral Palsy"? Not sure, but it was like I did everything in my power to not say them.
So have I accepted CP? Based on that conversation, I'm going to say probably not as much as I'd thought I had. I couldn't even say the words in the context of talking about the boys' disabilities. And the tears. Seriously. How do I get those under control? I am going to start having to talk about CP more and more as the boys widen the gap between cute little babies who sit in a stroller and big boys who can't walk [easily]. This is all such a big learning process, but as my own harshest critic, I truly failed the first attempt.
Someone nicely, and with undoubtedly no motivation but thoughtfulness and concern for these boys she has watched grow for a year, asked me about them and I fell apart. What happens the first time I get a rude comment??
Sitting on the couch in the living room, I'm wrapped in a blanket. The light is low and the December weather is grey and miserable behind me through our picture window. Jordan is with me, but across the room. We are keeping a safe distance from each other, not yet knowing how to interact through the pain and shock. Where is Rio? My memories of her during this time are sadly non-existent.
I hang up the phone and reiterate to Jordan what my midwife and I have talked about. I had told her everything the technician and radiologist said, and then she had done her best to reassure me. "There is still a chance" is the hopeful message I try to take from her. She asks me to try to stay calm until I see the specialist but she knows me well enough to realize that isn't possible.
Through choking sobs I begin to beg - to Jordan, God, or whoever in the universe who might be listening. "Please let this baby live. I don't care what's wrong with it, please let it live. I will do anything for this baby, just let it live".
My pleading didn't help. That baby would sadly never draw a breath, be held by her mom, or grow up to be Rio's best friend as I'd dreamed. Her loss broke my heart in a way I will never fully recover from. But amidst the pain, that was my defining moment of strength. My unconditional love for her, and for her living, breathing 2 year old sister who still needed a mama, was when I first realized: I can do this.
I believe everything happens for a reason. I believe I was meant to love and then lose her. I believe that in that loss, though a part of my soul was crushed, another part of it thrived, preparing for challenges that I had no idea were coming. Without me realizing, it was some sort of test, and I passed. My heart assured my brain that I could, and would, love a baby no matter what. And more importantly, I found an inner strength I didn't know existed.
Not long after that devastating December, I was pregnant again, with the twins. Such a blessing to have two healthy babies to join our family. Yes, I was still grieving, but I was filled with so much hope for the future. Then, Asher and Nolan were born at 26 weeks and our world came crashing down around us again. But without even consciously realizing, my heart again said I can do this.
People would always ask how I was coping and I would tell them I didn't have a choice. But in hindsight, I realize I did have a choice. I chose to step up and be the mother the boys, and Rio, needed and deserved. Yes, choosing anything else was completely unfathomable to me, but maybe to others that choice would not have been so clear.
There were, and still are sometimes, many devastating moments. Bad days, bad news, more bad days and more bad news. Sometimes my fear of the future is crippling and I don't know where the strength is going to come from. But with the obstacles that we get through I am reminded each time that I can do this, even if in the moment I am feeling just the opposite.
My girlfriend Leanne was showing me photos of our kids on her camera the other day. I got to this one
and the conversation went like this:
Tracey: Oh Nolan (because of the ridiculous face that he makes)
Leanne: You mean Asher.
Tracey: No, I mean Nolan.
Leanne: Well, it's Asher.
Tracey: WHAT?!
That my friends, is a first. It has been literally years since I have gotten them confused. To Jordan and I and anyone that knows them well, they look nothing alike. Yes, I have admitted that when I look back at baby pictures I often can't tell the difference, but now? Never!
Except this one time.
And sure, you're all going to go "Of course it's Asher". Easy for you, I set you up for it so don't go thinking you're so clever.
Clearly, when people tell me how much alike they look, they're not wrong. Even mama gets confused sometimes.
While Jordan and I do not practice attachment parenting, one aspect of mothering Rio that I just loved was wearing her around in her baby carrier. It wasn't because I had a firm belief she needed to be close to me, it was because sometimes that's where she was happiest. That, coupled with the fact that our stroller weighed 14 tons, I often preferred to shove the carrier in the diaper bag and leave the house with no other "equipment".
When we went on a three week American road trip when Rio was a baby (evidently, we like three week American road trips), we went entirely without a stroller. She was such an easy baby and such a delight to carry around.
When the boys were born we got a matching baby carrier to Rio's, hoping for the same situation. We quickly learned that nothing is the same with twins. Two babies in two baby carriers meant two parents required to carry those babies. Jordan working full time didn't exactly leave a lot of baby carrying time on our plates and I certainly couldn't be out and about with two babies on me.
But now, those babies don't need carriers any more, or at least not in the traditional way. Luckily, because of the flexibility of this type of carrier, we can still use one for piggy backing Asher. But there was no reason to keep the second one because there is NO WAY Nolan would be willing to be that restrained.
So in a recent clear out of baby gear, I decided to sell Rio's original carrier. I listed it and it was gone within a day. It wasn't until the new mom with a 2 week old baby girl came to get it, that I had trouble handing it over. Suddenly I was blasted with memories of baby Rio on my chest and I didn't want to part with it. As I slowly handed it over, I said to the mom, with Rio standing next to me "Rio lived in this". The mom sweetly bent down to Rio and said "A new little girl is going to live in this now too". Awww, just the right words to make me a bit sadder, yes, but make me very happy that some other sweet baby and mama are going to bond the way me and Rio did.
It's funny how an inanimate object like that can hold so many memories. Farewell Baby Hawk, you served us well.
This week, Ellen Stumbo's writing prompt is "Holding my child for the first time". It just so happens that the first writing prompt I ever wrote for the Momoir Project, and the first piece of writing that I ever had published was care of "The First Time" I held the boys together, at two months old. Because I cannot think of anything else I'd rather write about, I am re-posting the text below. I am still as proud of this piece now as I was then and it takes me back to that amazing moment.
The First Time
Most of the early days consisted of staring at my twin boys through the glass of their isolettes. I held one of them whenever they could tolerate it, although often times neither of them could. It was a fine balance between giving them time to stabilize on my chest, and returning them to the safety of their isolettes before they were caused any stress. Having babies that were regularly too unstable to handle my touch was an unbearably helpless feeling.
Fifty-nine days after their premature birth I went to visit them, as I had done every other day, except something was different about the way the staff were looking at me. In a panic, I asked our nurse what was wrong. With a timid smile she assured me the boys were doing well and they thought today I might try holding them at the same time. I couldn’t believe what I was hearing – I was about to hold both of my boys together. I had desperately longed for this, but had been forced to suppress my hope because I was so tired of the daily disappointments. Today it was actually happening and I couldn’t do anything but cry uncontrollably. I had envisioned this moment more times than I could count, and now, it was finally here.
After I composed myself, the boys were very carefully laid on my chest, their fragile bodies almost weightless. Their tiny faces peeked up at me through a mass of tubes and blankets. With every assisted breath, their chests rose and fell rhythmically against mine. I softly touched my lips to the top of their heads and enveloped them with my arms, ensuring they felt each others’ presence. I watched their heart rate monitors and saw that everything was within normal range; they were adjusting well. I tried to relax and take it all in, but sat completely still for fear of distressing them. Holding my babies should have come naturally moments after they were born, and yet here we were two months and hundreds of complications later.
Like always, the room was full of staff, families, and relentlessly beeping equipment, but it felt as though the boys and I were the only ones in the room. I saw the pure joy on everyone’s faces around me and realized that they too had been anxiously awaiting this moment. As I looked down on the miraculous babies I was holding, I felt at peace for the first time since their birth. They still had a long and uncertain road ahead of them, but for those few precious minutes everything was as it should be. My boys were exactly where they belonged.
The World CP Challenge is over and for our team, was a complete success.
We took 1,418,536 steps.
We raised $7427* dollars. SEVEN THOUSAND DOLLARS! To think I was scared to make our initial goal of $2000. Unbelievable.
We finished 1st in Canada for fundraising.
We finished 2nd in the world in our division of 1082 teams and 4th of 2002 teams over all.
Most importantly - we spread CP awareness every day.
Will this money we raised ever directly affect Asher and Nolan? I can't say for sure, but that's not the point. If it can help someone else living with CP, or can aid in research that will help make CP more preventable, then in my opinion, our fundraising will have been a success.
Because this was not about raising money for Asher and Nolan specifically, nor was it about finding a cure for CP. Do I think CP can actually be "cured"? Well I'm not sure. The answer to that lies far outside of CP specifically, and under the general question of "can brain injuries be reversed?". One day, I hope so.
But I do think that more imminently prenatal and neonatal care will improve more than it already has. To compare neonatology 50 years ago to now, it is staggering how many advances have been made. Not long ago, babies born as young as Asher and Nolan were considered a miscarriage, and now more times than not those babies go on to lead thriving lives. So if medicine has advanced that much in caring for tiny babies, I have no doubt that it will keep advancing to a place where they can prevent many of the brain injuries that happen to babies either in utero or shortly after birth. If some of the money we raised goes into that, I will be thrilled.
The greatest part of this challenge, for me, has been how much I have been talking about CP, and hopefully, how much each of you who have supported us have been learning about it too. I don't want people to judge my boys, or pity them. I just want them to be given a fair chance at all of the opportunities the rest of us have. I don't think that's too much to ask.
So now, some thank yous. Firstly and most importantly Auntie Di and Leanne. Without your steps and your fundraising, we couldn't have done this. Thank you for loving our kids as much as you do, walking every day, and hounding your friends and family for money. Awkward, I know, especially when they're not your own kids. We appreciate it immensely.
And then to you who donated, all I can say is WOW. Often times it wasn't just the donation, it was the note that went along with it, or the private message you sent offering your support. Many of you had me in tears. We can one day explain to Asher and Nolan how much everyone cares about them and acknowledges and embraces their differences. You opened your wallets, yes, but that money may as well have been deposited straight into my heart for the value of friendship and support that it showed our family. We will remember this, and you, always.
I wish I could put your names up in lights, but this measly little blog will have to do. I keep reading the list over and over, so happy as each name registers. Seeing the diversity of all the people on this list and how we are connected to all of them has been absolutely heart warming. From childhood friends we haven't seen in years, to friends' parents we've never met, and everything in between. Jordan, the little heart breaker, even got a donation from an ex-girlfriend on another continent! 120 of you gave us $7427 dollars and that is totally unbelievable to me. So without further ado - thank you, thank you, a thousand thank yous, to*:
Aaron
Aaron
Adele
Albert and Betty
Albert and Connie
Andy and Pat
Anna
Annette
Annie
Bernice and Bill
Bevie
Brandon and Mikale
Brian
Bridget
Candice
Carrie
Cathy
Chelan
Chelsea
Chris
Chris, Becky, Gabey and Olivia
Christa, Adam, Alexis and Madison
Cindy
Cindy
Clare
Connie
Connie
Connie
Dana
David and Shellene
Dawn
Denise, Ryan, Hanna, Olivia and Luke
Donna
Donna and Rowan
Dre
Drew
Ed
Erika
Frieda, Ryan, Chris and Ben
Gail
Gail
Garett, Maralise and Calla
George and Jackie
Georgie
Hazel
Jacqui
Jamie, Cameron and Elliot
Jane
Janet
Janice
Jason and Yuli
Jeff and Renee
Jen, Jon, Kadence, Maximus and Rianna
Jenn, Raymond, Blake and Joe
Jessica
Joe
Johnny and Jake
Judy
Kaiti and Gio
Kari
Karina
Kate
Kelly
Kepmen
Kirsten
Kirsten, Danny and Evie
Lacey
Laura and Jason
Laurie
Laurie and Paul
Lisa
Lisa
Loretta and Steve
Lori
Lynn and James
Maggie, Mike and Alec
Marilynne
Martine
Meghan
Melanie
Michael
Michael and Trisha
Michelle and Rick
Michelle, Jon, Jenna and Ella
Mike and Dawn
Natel, Darren and Madden
Nicola
Nicola
Nicole
Pam and Darrin
Pam and Regan
Patti
Paula, Daryl, Gavin, Jordan and Kayla
Peter, Shana and Jeremy
Piet, Ale, Lua and Gaia
Rachel, Jason, Dane and Arden
Rebecca
Richard
Richie
Sacha and Jon
Scott, Ann, Lee and Owen
Scott, Mary, Cassia and James
Sharon
Shasta
Stacey
Steph and Elise
Steve, Jen, Chase and Arden
Summer, Tammy and Don
Tammy
Taryn
Tim and Barbara
Tim, Krista, Kaitlin and Connor
Tom
Tracey and Kevin
Tracie and Kevin
Tracy
Tracy and Mike
Tracy, Eric, Toscane and Emeric
Travelodge Duncan
Wayne and Linda
Wendy
Now, I can't leave out the stars of the show. Asher and Nolan have something they want to [apparently very quietly] say to you:
Cheeeeeeeese. Also, THANK YOU EVERYBODY!
And here's one last piece of good news: fundraising remains open until November 2. So while I am going to stop asking now, you still have a month to donate. If you wish your name was on our wall of fame and you want to show us your love, please pledge.
*If I have somehow missed your name, please send me an email and make me feel really bad. And if you donate before Nov. 2 I'll add your name and update our grand total to include you :)
Asher's language has blown up recently. He's gone from barely talking to using full sentences over night. Along with that he knows his alphabet, can count to 12, and knows every colour under the sun. I know this isn't exactly rocket science for a 2.5 year old (corrected), but it's pretty exciting. His limited vocabulary wasn't able to show us what he was actually learning, so it is really fun to finally get to see what he's been storing up in his head!
The first video is pretty brilliant physically. He has been playing with Rio's old toy laptop for quite a while, and to be honest I've never really paid attention to whether or not he's actually following the instructions. Evidently, he is. This video isn't great because I stood dumbfounded watching his success for a long time before I thought to get it on video, so he's pretty tired and really struggling here. That said, it is a very good example of how much trouble Asher has, yet how persistent and patient he is.
This second video is of him naming all of the letters and animals in a book. It's long, so I will forgive you if you get bored and turn it off by the letter C. You're not missing anything other than ridiculously cute pronunciation of "oposis" (octopus) later on.
I know I'm biased but isn't he adorable?! And pressing those keyboard letters with one finger - how amazing is that?! Swoon. That kid is a star.
