Thursday, May 29, 2014

One of Those Days

You know how some days everything goes wrong? Like you wake up in the morning, spill your coffee and then every other activity of the day goes to sh*t? Yes? Good, because I have those days alllll the time.

Today, however, was not one of those days. Today was a good day. A really, really good day. Let me list all of the reasons why:
  1. Progress was made in securing Asher a new power chair and manual chair in time for school in September. Asher also had a driving lesson today and I cannot believe the progress. He's amazing. Duh, obviously.
  2. A pretty, fancy (also referred to as 'pretty fancy') commode/shower chair was approved for funding today. That means that going forward (from when we receive it in several weeks) Asher will have a safe, secure, comfortable seat for not only the toilet (sorry Ashy if that's TMI) and the shower. It's awesome. And yes I've come a long way when I can genuinely refer to a bathroom chair as awesome. This is great news because when you're a kid with a physical disability, even going to the bathroom can rack up a bill of $2000. You can see it here if you're interested. 
  3. Through one simple email I have started the conversation with a local municipality about making some recreational accessibility improvements. Turns out that sometimes no one has thought to ask, and in my case, I was the one who asked first. More details to come in a blog post when it's official - for now I don't want to jinx it. But let me just tell you I don't think I have EVER been more proud of myself than I was when they phoned me today. One well written email - an hour of my life - that hopefully positively impacts many people in my community.
  4. Tomorrow (I know, this didn't happen today, but I'm thinking about it happening tomorrow so that falls under the umbrella of today's great day) Asher and I do a walk through of the elementary school with the principal, at his instigation. The purpose of this walk through is to look at Asher's travel route through the school/schoolground in the fall, and ensure everything is accessible. If it's not, it will be in time for September. How great is that?! 
  5. We're having strawberry-rhubarb crisp for dessert. If that doesn't end things on a high note, I don't know what will. 
  6. And lastly, Asher got a pretty cool package in the mail today. Can you figure out what that might be? Here's a tiny little clue from a photo we just took....


So like I said, a pretty great day, no?!

Wednesday, May 28, 2014

Welcome to Big Boy School

After last week's great, but somewhat heavy, meeting with the adults about transitioning the boys to kindergarten, yesterday was all about the boys. Welcome to kindergarten, Asher and Nolan!

With the other intakes from all three kindergarten classes at our school next year, the boys visited the school gym and moved around from station to station, partaking in various kindergarten activities. Although everyone already knows the boys, it's an opportunity for the kids to meet the teachers, as well as give the teachers a chance to observe all of the kids. I am pleased to say the boys were very well behaved (even if Asher has zero concept of what "whisper" means). The one time Nolan interrupted his teacher while she was presenting to the whole group, he actually put his hand up - pretty darn adorable.

The boys had fun and felt very special. How I felt is another story, but I will remind myself it's the kids they'll grow up with, not some of the clueless parents. And once again, the teachers and the principal showed us a warm, welcoming, and supportive attitude and that counts for a lot. Everything, really.

Nolan, ready to make a break for it. So excited to get going, I was inconveniencing him with a photo. 

Story time with the librarian.

Self portrait #1. SO PROUD of his printing/drawing and the amount of effort that takes him.

Self portrait #2. An abstract rendition of himself. And no, I will not correct those backwards Ns ever.

Kings of kindergarten.

Loot bags!

According to these two, September can't get here fast enough. I wish I felt the same!

Monday, May 26, 2014

Just Reading

Nothing strange about this sight. Sitting, looking out the window and reading next to his bookshelf - that's normal business around here.


Except that's not Asher.


While Asher was out of his chair, Nolan decided to climb on board and give it a try, somehow managing to slide the tray on himself. The resemblance from behind is obviously an easy mistake. But face on - no one could see that smirk and think it's anyone but Nolan.

It's interesting timing because we've been doing a lot of thinking about all of Asher's "stuff" and how it all affects Nolan. This is a clear example that even if Nolan knows he doesn't need any of it, it doesn't mean he can't take it for a spin to try it out. So that begs the question - what happens when Asher's power chair is left unattended?! God help whoever is in Nolan's way....

Friday, May 23, 2014

Transition to Kindergarten

Yesterday we had our transition to kindergarten meeting. Not the fun "Welcome to Kindergarten" meeting, like every child in the boys' entry year at our school will have next Tuesday (or likely every school in the province will have sometime this spring), but a special meeting to address the boys' support needs next year.

There was a cast of thousands in attendance. Ok, not quite thousands, but hundreds. Ok, ok, not hundreds. ELEVEN. There's the truth. ELEVEN. That said, that's a lot of people - that number of professionals has not been in a room together on our behalf since the boys' delivery room. This was only slightly less painful. KIDDING! (and wow have I come a long way that I can make a joke in reference to the boys' birth!). Annnnnnyway, I digress. At this meeting, we had:

Jordan and I
Their principal
Their teacher
The school's learning resource teacher
The district's learning resource teacher
Our current OT
Our current PT
The school PT
Someone else from the district (not sure what her role was?)
The head of the EAs (educational assistants)

It was a bit overwhelming.

Don't get me wrong, everyone was great. The team is all on board and has the same hopes we do for the boys' school experience so we definitely feel good about that. But spending an hour reviewing the things your kids cannot do (mixed in with the things they can do, of course)? That isn't fun. It's the opposite of fun in fact. I did a whole lot of nodding while sniffling into my kleenex. But hey, there was no full on sobbing, so I'll call that a win.

All that said, through the tears I actually laughed at times. I felt happy. Optimistic. Hopeful. I have no doubt that the boys, and us, will be very supported when kindergarten begins. Will we have our therapists at our finger tips like we do now? No, we won't, and that will be a big, difficult change. But we will have an incredibly supportive school staff to take their place, so I can't complain about that. In fact, I can only be thankful for it. I went into that meeting with an incredibly long list and it was all covered off at their instigation. They showed me we are definitely all on the same page. The school is excited. They're positive. They're certain that while they will teach Asher and Nolan, the boys will be the real teachers. I couldn't agree more.

Through my tears, anxiety, and hesitation, I can see there are only good things ahead. Remind me of that come September, ok?

Tuesday, May 20, 2014

Beach Time

While Rio was at the beach with her class on a field trip, the boys and I were at another beach today. It was a fluke, really. We needed to kill some time after therapy while Jordan slept after night shift. I was reminded of a park/beach not far from the therapy gym so off we set. Picnic tables? Check. Bathrooms? Check. Grass? Check. Playground? Check. Sand and ocean? Check. It checked all the boxes.

Let me back up, however, and say I had no intention of actually taking the boys to the beach. That is an impossible task for me. Carrying Asher and his 40+ pounds, plus our stuff, plus holding Nolan's hand while he tumbles (likely on repeat) is just not in the cards. But sitting on the grass near the beach sounded just as magical.

So imagine my surprise when said beach had a wheelchair ramp onto the sand! Am I just clueless and these actually exist at beaches, or are they really onto something here? No other beach we frequent in Victoria has a ramp....although given that there are literally hundreds of beaches in Victoria, it's fair to admit I may not have encountered them all. Here's a little look:


From the gravel path where we sat on benches and had lunch, there's a concrete ramp. Then at the bottom of the ramp there's a "carpet" (I don't know what else to call it?) that goes near to the water - in fact given all of the seaweed that was washed up on it, I'd say it goes right to the water depending on where the tide is at. 

Although I have no pictures to prove it, you can use your imagination to see me wheeling Asher down that ramp and carpet and parking it in the sand. Suddenly the conundrum of not being able to go to the beach is solved! Sure today wasn't the best beach experience because we had no blanket to sit on, no flip flops (runners, knee high socks and AFOs aren't really the best beach attire), and no toys to dig with, but it was a good first try nonetheless. And of course, of the hundreds of beaches in Victoria, this one does happen to be all the way across town and verrrrrry popular, so in the height of summer it may be a nightmare. But I won't focus on that and what I will focus on is: Picnic tables, bathrooms, grass, playground, sand and ocean. More specifically, sand and ocean that Asher can access. I'm a very happy mama. 

Who wouldn't be when you have these dapper gents by your side for a picnic?



And to leave you with one funny picture...when we first arrived at the beach the boys didn't care about the possibility of picnic, playground or beach. All they cared about was the construction site beside the beach. BOYS! So typical!


Oh beach weather - I'm so glad you've arrived! (At least for now). I see a summer of sandy feet ahead!

Sunday, May 18, 2014

She's 8!

Where have eight years gone? Didn't I just give birth to this little sweetie?


She is officially no longer a little girl. Big girl, going on teenager. Yesterday we had eight friends over for a rainbow loom party (the latest craze). True to form, I themed it up, and also true to form, Rio ate it up. She was a very happy girl with a very full bucket.









Happy Birthday to our sweet Rio. Eight of the greatest years we could have ever imagined!


Friday, May 16, 2014

I'm Not Special

Ok so I didn't write what I'm about to share with you (after what turns out to be a verbose intro) so you may not be compelled to click on it - but PLEASE do. This is an important read to me. Let me convince you.

While I appreciate people telling me I'm "super mom" and they "don't know how I do it" that always makes me feel uncomfortable and puts added pressure on me on the days when I am NOT a great mom. Trust me, those days exist. Just yesterday I had a mom stop me in public to tell me she loved overhearing how I communicated with the boys. I was proud as a peacock, I will admit, and felt really, really great about my mothering skills. "I've got this", I thought to myself, pretty high on life. That was until not forty five minutes later when I yelled at the boys in the van. Not raised my voice - yelled. Don't judge me (or do, your choice), I am trying to make the point that I can be a good mom, and a not so good mom, all in the span of one hour. That has NOTHING to do with the fact my kids have special needs.

You see, I "do it" because I love my kids, just like every other mom. I "do it" some days better than others, just like every other mom. I "do it" because I am a mom, pure and simple - nothing to do with special needs.

Don't get me wrong, I am the first to tell you that sometimes my life is more challenging than yours because sometimes it is. But you know what - sometimes your life has more struggles than mine. My life is pretty darn good and blessed, and we all have our ups and downs. Sometimes being a special needs mom is part of the downs, but more often it's part of the ups. I am not special. I am just a mom. I find that of the friends that have come and gone in my life since the boys' birth, the ones I am still the closest to are the ones that really get it. By that I mean they aren't afraid to talk to me about the hard stuff the comes along with my life, but also aren't afraid to have a regular old fashioned vent about the other hard stuff - just being a mom, raising the best kids we can.

So in light of all that - please have a read right here. She makes so many amazing points that I didn't even try to make because she's bang on and hilarious so why would I bother. Plus she sort of drops an f-bomb which makes me love her even more. Because yes I do that too, just not here!

Happy weekend, friends.

Wednesday, May 14, 2014

From the Tiniest Acorn Grows the Mighty Oak

Do you remember last year when I shared an incredible video chronicling the first year of baby Ward, a fellow micro-preemie? If not, I'll remind you here. It's beautiful and I can't make it through without crying. If a picture is worth a thousand words, a video is worth a zillion.



Like our family, Ward's parents received a NICU care package Graham's Foundation - a charity near and dear to my heart. When the boys were in the NICU, I got a care package from Graham's Foundation and it made my day. To remind you, here is what I first had to say about Graham's Foundation when I blogged about them in 2011:


"As soon as the boys were born, I desperately googled everything I could about prematurity, looking for resources and help. Sadly, Canada doesn't seem to have a lot of support in place, at least not compared to the U.S. who has the March of Dimes. I was desperate to find something, anything, to connect to at such a scary time.

And with Graham's Foundation, I did. Nick and Jennifer Hall started Graham's Foundation in memory of their son Graham, who like our boys, was born far too early along with his twin sister Reece. Sadly, Graham lost his battle at only 45 days old. The Halls wanted to do something to honour Graham, so started a charity in his name to provide support to other parents of micro-preemies, sending care packages to them in the NICU. Although they're based in the U.S., I contacted them, thinking it was a slim chance they'd include me in little old Victoria BC. But I heard back from them almost immediately telling me my package would be on the way shortly. I was impressed.

Like many other days, one in mid-December was particularly hard. Nolan had just come out of some drama with a lung hemorrhage and Asher was right in the middle of some drama of his own with suspected seizures. I left the hospital in tears (what else is new) and a few hours later received a phone call at home from their nurse - never a good thing. This time, however, I could tell she was happy. She was calling to tell me my care package had arrived. Everyone who worked closely with us was excited to see the contents.

I raced back to the hospital and tore into it. It contained several thoughtful items like coffee, tea, snacks, hand sanitizer, a disposable camera (the best thing ever to leave at the bedside for the nurses to use), a note pad, and two of the tiniest shirts I had ever seen. It absolutely made my day. It had arrived on a terrible day, just when I needed a pick me up. Even better - it arrived on day 45 of the boys' stay. Knowing Graham had lived 45 days, I felt even more sure that this was the day it was meant to come.

In the past 2 years since the boys' birth I have watched their foundation grow. I don't know them personally, but I feel so proud of them and what they are doing.  I truly believe that when you go through something like the families of preemies go through, it is for a reason. In the case of the Halls, they really are making the world a better place - one care package at a time."


Like I said then, and I still feel now, these guys are awesome. So here's where we come full circle back to baby Ward. His parents are teaming up with Graham's Foundation for a fundraiser that's incredibly easy to support. You buy a really beautiful t-shirt and Graham's Foundation benefits. Check it out here. Aren't the t-shirts lovely? And the saying: "From the tiniest acorn grows the mighty oak" - I can't think of any more fitting way to describe our tiny miracles.

So go ahead and buy one for someone you know and love who's been affected by prematurity. (I'd say "hint hint yours truly" but I'm getting one of my own). Great cause, great shirts, great awareness. Do it, your heart will grow - I promise.

Monday, May 12, 2014

Spoiled

To say I got spoiled for Mother's Day is pretty much the understatement of the year. I was honoured by, and got to honour, my whole family throughout the day. No words can describe how wonderful my day was, so I'll give you the play by play in pictures - no words required.

















Feeling blessed and refreshed!

PS - I am a MUCH better cook than breakfast cereal and macaroni and cheese!

Sunday, May 11, 2014

Tales from the Vault - The Letter

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.





Mother's Day is a bit of a strange day for those of us who are moms, but have no mom of our own. Thankfully, my life is full of loving, smart, supportive women, most of whom who happen to be moms. I am blessed to have several mother figures, each inspiring me in their own way to be a better mother. Thank you to all of the moms I know, doing their best for their kids every single day. And thank you to my kids for being who you are and making me so proud and honoured to be your mom.

Happy Mother's Day to all of the wonderful moms in my life, near and far!

-----

The Letter

Holding my twin boys at their bedside, I've been rocking back and forth so long that my legs are numb. I look down at their tiny faces, amazed at what they've been through. I can barely see their pale skin under a mass of wires and tubes and I am sharply reminded of the multitude of obstacles they still need to overcome before we can bring them home. I close my eyes, focus on the warmth of their bodies against my chest. The familiar sound of the cardiac monitors around us becomes nothing more than white noise. I am lulled into a trance.

Asher and Nolan have been in the neonatal intensive care unit for three months. Since their birth at twenty-six weeks gestation, weighing only two pounds each, my husband, Jordan, and I have spent every day coming and going from the hospital while trying to keep life as normal as possible for our three-year-old daughter, Rio.

Knowing it must be late now, I look up to check the clock and see my mom walking in. She hadn't told me she was coming today, and as she moves towards me, I sense that something isn't right. She gives me a reassuring smile and my posture loosens in relief.

I open my mouth to say hello and instead, I'm startled by the sound of a ringing monitor. I see Nolan's skin begin to turn a familiar shade of bluish-grey. I glance at the screen to see the numbers plummeting. As my own pulse quickens, he pinks up and his heart rate and breathing stabilize, just as quickly as they fell. His nurse watches closely. I give her a nod letting her know we're both fine and take a deep breath. These scares never get any easier.

I look around for my mom and she's no longer there. I am momentarily confused. Then, reality sets in.

How could I have been so silly? Of course, she's gone. She was never here. She died when I was nineteen and I am left with only fantasizing about her presence when I need her. I shake my head, wishing that, for once, it had not been a dream.

There have been countless times over the years when I could have used my mom's guidance at all the important moments, like when I got married or when I was pregnant with Rio or when I was buried in grief after the loss of another daughter. But I could also have used the little things I missed out on learning from her, like how to tie your husband's tie in a perfect double windsor or how to make a turkey dinner for twelve.

So like when I read through her recipes, trying to guess at the correct cooking time that was kept only in her head, I muddle my way through motherhood without her here to counsel me. I desperately want her advice, so I go looking for it.

*****

"Where could it be?" I mutter to myself with increasing urgency.

I pull every book off the shelf, leaving a pile scattered across the floor. I grab a box from the top shelf of the closet, wipe the dust off and open the lid: nothing. I run frantically downstairs and begin rifling through drawers, even though I'm sure it's not there. As a last ditch effort, I brave our cold, musty garage to see if my box of mementos is tucked up in a far corner. I balance on a dirty ten-gallon bucket I've turned upside down, reaching in without seeing. I can't feel it and exhale in dismay.

The letter that my mother had written to me on her deathbed is gone. My last tie to her has vanished to a hidden nook of my house.

I had last pulled it out while the boys were still in hospital, trying to find some sage words of advice that would help me get through the exhausting, and often hopeless, journey we were on. I didn't find them.

What I did find was the scrawling, nearly unrecognizable handwriting – a sign of the cancer that was ravaging her. In it, she told me what a surprise it was to find out she was pregnant with me, the fourth child, when she was forty. She advised me to choose my husband wisely, although she knew I would. She made jokes about how many grandchildren she would have. She reminded me that everything happens for a reason, even if it's hard to understand. And then, with a "Love Mom," it was over. That was it. No answers to all of motherhood's great questions, just a dying mother saying her final goodbyes.

Now, months later, after Asher has been diagnosed with Cerebral Palsy as a result of the brain injury he suffered at birth, I am trying to find that letter again. I'm hoping that maybe this time, I'll uncover some jewel that I had previously missed, to help me to deal with this life-altering news. But if I can't find the letter, I can't find my answers. After searching every plausible hiding spot, I fall into Jordan's chest in frustration.

"We'll find it," he assures me as he smoothes my hair.

"And what if we don't?" I ask dejectedly.

*****

There's flour all over the kitchen floor and sprinkled down the front of Rio. We're making sugar cookies and while I roll out the dough, she carefully imprints the butterfly cookie cutter. I resist my urge to do it for her, trying to speed up the process and minimize the mess, reminding myself that she's having fun. She laughs with abandon as I catch her sneaking yet another mouthful of dough. She is the image of me at her age, wearing the blue Bambi apron I once wore, a little worse for wear, but still intact.

I think back to baking with my mom. Standing on tiptoes to see fresh cookies on cooling racks is one of my fondest childhood memories. I look over at those very same racks on my own counter – another of the many things I pilfered from home after my mom died and I moved away.

As I observe this interaction with Rio, I reflect on the many parallels between my mom and me. Sure, there's our love of baking, our ability to be a great hostess and our penchant for making a good list. More importantly though I realize that it's the bigger things. I may do things differently than she did: she was strict and old-fashioned, while I am much more liberal and communicative. But the fundamental morals and values remain the same. My mom gave life lessons by example and she taught me how to be a mother long before I became one: to be a good person, to fiercely love your family and friends and to believe in your own strength.

I now strive to bestow this upon my own kids.

*****

I'm back in the bedroom, tearing the bookshelf apart one last time.

"It has to be here," I tell myself as I pull out all of the same books, hoping the letter will fall out from between them.

It doesn't.

I resign myself to the fact that, at least for now, it's lost. As I begin to load the books back on the shelf, I see a glimpse of white. I take a closer look, and sure enough, there it is, an envelope tucked along the back wall of the shelf.

I quickly grab it and clutch it tightly to my chest for only a moment before putting it back safely where I know I'll find it next time. Strangely, I don't need to read it. I just need to know it's there. I know the answers to motherhood that I've been looking for have been inside me all along, waiting for life to show them to me. My mom may only be here in spirit, but with the foundation she provided, I am becoming the mother my children deserve and one I hope that she would be proud of.


Wednesday, May 7, 2014

It Fits!

Yesterday I was reading Kate Leong's blog post about her ten year wedding anniversary coming up. (If you don't know Kate's story - MY GOD - get caught up on her blog Chasing Rainbows. She and her family are amazing.) To celebrate the past ten years, she and her husband and their two kids are "eloping" to Vegas, where they'll renew their vows. The kicker - and the part that jumped out at me - is that she's bringing her wedding dress.

Next month, Jordan and I are also celebrating our ten year wedding anniversary. We too, have been through our share in the past ten years - safe to say more than a lot of married couples at our stage of the game. We've had good times, bad times, and a whole lot of in between times. While we aren't renewing our vows in Vegas, we will be celebrating with friends at the beach property where we got married.

This morning I was still thinking about Kate's post, particularly about her dress. I have wanted to take my dress out and try it on for years but never had the guts, and here Kate was, planning to wear it in public again.  So before I changed my mind, I raced in the house with ten minutes to spare between finishing my errands and picking up the boys from preschool and I tried it on. Normally, I despise selfies, but since I was the only one home and needed evidence of this moment, I will share these with you. First, how it looked ten years ago:



And now today. So spur of the moment that I still had my sunglasses on my head, and what you see behind me is my clothes all messed up in piles of archival paper that I ripped out of the dress before I had a chance to see how it should all be packaged up again when I'm done:


And from behind, so that when I look back on this I don't go "But did you actually do the zipper all the way up?".


IT FIT. It actually fit. Sure if you saw me up close it was not nearly as flattering a fit as it was on my wedding day and I certainly could benefit from a pair of spanx this time around - but I don't care. The zipper did up and that's all that matters. And listen, I was counting on it not fitting so I certainly don't think I deserve a pat on the back just because it does. Fit, not fit - that really wasn't the point. The point was, I actually tried it on - something I've been wanting to and for some reason avoiding. Maybe because the girl who wore that dress ten years ago is a very different person from the haggard old broad (kidding! sort of?!) who tried it on today, and I've been scared to face that? I'm not sure, but now it's done and it can get safely packed away for another decade.

Ten years, four babies, testing the limits of 'in sickness and in health', and a whole lot of stress eating as a result - and I could still get the dress on. My day has been made.

Monday, May 5, 2014

Sleepyhead

Yesterday the boys went to a birthday party for their very good friend from preschool. The family was lovely and gracious and very accommodating to Asher's needs, plus the boys had a ton of fun and really great behaviour. I'd call that complete success! It's not the party that's noteworthy however, so much as the aftermath.

I brought the boys in from the car and put Asher on the couch while I gathered the rest of the stuff. Asher was quiet for a minute so I didn't rush in to see him, but I definitely went back within 4 or 5 minutes - and in that short period of time this is what I found:



Zonked! I left him to snooze but didn't want to affect bedtime so after a few minutes picked him up in an effort to wake him. No go. So I decided I should probably just settle in and enjoy this for a few minutes because it happens so rarely these days (Rio the photographer says I look weird. So apparently you should focus on Asher, not me):


After a few more minutes of dead-to-the-world sleep like this, I decided I really had to wake him or I'd pay the price later with some sort of circus animal routine at bed time. This is what ensued after I tried to sit him up on my lap:



The funny thing is, this went on for a long time before I even started recording. That kid was OUT. And yes, I know I'm probably a mean mom to have recorded that and shared it, but is he cute or what?!! (The correct answer is "Yes, very very cute" in case you weren't sure).

Thursday, May 1, 2014

What Could Have Been

I am sharing this post in honour of Parents of Preemies Day coming up on Sunday May 4.

***

Several weeks ago, when I was writing my post about the fourth anniversary of the boys' homecoming from the NICU, I wrote something along the lines of the following:

"I couldn't help but get a little teary when I thought about how much different things could have been".

When I then went back and read what I wrote, I realized it could have been misconstrued without further explanation - so I promptly took it out.

So let me ask you: What do you think I meant by that statement?

Well I tell you this. Up until sometime in the past (a year ago? a month ago? a week ago?) I probably would have meant something different. Something maybe like...

What could have been had the boys been born at term, not 14 weeks early;
What could have been if they'd come home from the hospital at birth, not after a five month hospitalization;
What could have been if we weren't all still traumatized from the NICU experience;
What could have been with typically developing twins, running around and getting into trouble as I'd imagined;
What could have been without cerebral palsy and therapy and equipment;
What could have been if our family unfolded exactly the way I'd always thought it was supposed to.

Nolan, ventilated with an IV in his head because all other sites had been exhausted.

Asher, ventilated and getting an EEG to rule out suspected seizures.

What could have been: such a loaded statement with endless hypotheticals about a different reality. But when I wrote it recently, that different reality wasn't the one I was referring to at all. What I actually meant was...

What could have been if Asher and Nolan weren't here to be the final pieces that complete our family;
What could have been if the best sister in the world had no siblings;
What could have been if Jordan and I, who always wanted a big family, only had one child;
What could have been if my mind and heart were not enlightened to all of the abilities and blessings that exist within, and in spite of, a disability;

In short...

What could have been had the boys not survived.

Really, it all comes down to that and that alone. Both of them came very close to not surviving on multiple occasions. I flash back to the night they were born when our nurse told us we should take some photos of the boys. We said "Don't worry, we will tomorrow", knowing we only had our ancient cell phones and Jordan could bring a real camera the following morning. Her response was "No, I think you should take some pictures now". At the time, I thought she was just encouraging us to capture them in their first hours of life, and maybe that's all she meant. But in hindsight, I realize she was probably fearful tomorrow might not arrive for the boys.

But tomorrow did arrive that next day and then for 152 more days until they were home with us. And now four and a half years since their birth, we have cherished every single day with them, never taking a single tomorrow for granted.

Many other micro preemies, however, don't see tomorrow. And often if they do, they face lifelong health challenges. Sure, some are lucky enough to walk away from their micro prematurity more or less unscathed, and trust me - I used to focus on that. But no longer. Now I focus on the fact that our amazing boys are with us. They are incredibly healthy - as healthy as any four year old born at term, which is a miracle in itself. They are bright, shining stars in our family. They completed the perfect family that I may not have envisioned, but was the family I was always supposed to have.

So I ask myself - how could I ever have imagined what could have been being better than that? Because nothing in this world is better than them (all three of them!) exactly as they are.