What in the World?

Okay so, this post is going to be lengthy, and something I rarely talk about simply because I don’t want opinions but, because of recent events, I feel like it’s necessary to share this story.
This is not easy. It never was easy but it’s right! So here goes...

Our first son Brady was lost to Urea Cycle deficiency - OTC deficient.  We didn’t know he had this. We didn’t know I actually have this.  We didn’t know it is generally fatal in baby boys. We didn’t know that his journey to heaven would be a painful one. Not just for us... but for him. He suffered!
Brady was 6 days old when we started to notice he wasn’t acting normal and it took 48 hours of his short life for him to pass. That’s 1/4 of his life that he struggled, suffered and was put through the ringer. At infancy! He suffered with Cardiac arrest, seizures, dialysis ( with IVs through this head), pain, pokes, prods and ultimate brain death. Our first born little guy suffered.

We found out after his passing that each time we got pregnant naturally we had a 75% chance of having a healthy baby. This meant that 25 % of the time we risked the same outcome.
25% is a high percentage but 75% is so much higher. And the only way to achieve higher odds is to commit to IVF with genetic testing ahead of time.  This process is lengthy, VERY costly ( significantly more than traditional IVF) and you could end up having no healthy embryos or get shut down at the beginning, finding out a test could not be created to test your specific embryos and deficiency.  So, following Brady we decided to try naturally and pray our baby was one of the 75%.

This is Levi’s story.

Levi is our second son.  ! He was SO wanted, planned and the odds were in his favor to be healthy and thrive.

We did a CVS test at approx 13 weeks ( it cannot be done before this) to determine the sex and if this baby possessed this genetic mutation. We found out about a week later that this baby was a boy. That takes our odds down to 50%. He either does or doesn’t have the issue.  About a week after that call we got the call that sadly, our second little guy was going to join his brother in one way or another.

I can’t explain to you what this call felt like. Deep, helpless pain and conflict!

However, the one thing we knew we couldn’t do was put this baby through the same suffering as his brother.  And, I know someone will pipe in and say they that in terminations, babies do suffer.  Trust me, I’ve done the research. I am not denying this. But putting him through 10-20 mins of pain vs 48+ hours of it...what would you choose? Be honest. No matter your stance.  Take termination off the table.  Just pain.  Would you stand there and watch your child suffer without being able to do anything to help them?  Knowing the end result will be the same...for 2 days if you could choose 20 mins? You wouldn’t!

It took a couple of weeks to get an appointment at the hospital.  We had to go out of the area but were referred by McMaster Children’s Hospital to the out-of-town Hospital. And we stayed there for 3 days. I was admitted and cared for afterward. Our son was born and went to see his brother on the very same day, April 20, 2016. We named him Levi because it means together or united and we knew that he would be.  He would be united with his brother in the company of Jesus, safe and free of pain.

My journey was not free of pain.  I was not with my two babies. My body thought I had a baby so milk came in, bled for weeks, and mentally was exhausted and FULL of pain.  In less than a year we had loved and lost two babies. Both that were wanted, planned for and loved.

But, based on the 2 choices we had (keep him and let him suffer the same fate as his brother or save him that extended pain and suffering and let him go be with Brady now),  we made a decision based on what, we feel, was best for him!

With the new abortion laws in Alabama, Georgia and Ohio, and discussion of this possibility in Ontario, where I live, this is a necessary story to hear.   The decision to terminate my pregnancy with Levi was not to avoid the pain for me. I experienced and continue to experience a significant amount of pain.  It was also NOT birth control. We wanted him. This was a parenting decision.

As Levi’s ( and Brady’s ) mother, I, together with my husband ( Levi and Brady’s father) made the kindest choice we could make.  And, to be told we HAD to knowingly put that baby through the same suffering and ultimately the same fate, would be astronomically more painful for everyone, namely for Levi!

Never mind the fact that pregnancy at the best of times is a risk to the mother!!!

This discussion needs to stop!  The opinion is that these babies have the right to life and so, we should not make that discussion for them.  That sounds pretty and simple but every pregnancy, every baby, every conception, every mother, every father and every situation is different and most are not simple!  These blanket laws cannot represent the ideal choice in every situation.

This is NOT Gilead! We are not Handmaids! And as parents, we can make these decisions based on what is in the best interest of parents and babies.  And sometimes, like in the case of Levi, the best interest of the baby is to be let go and be free of pain.

We love you Levi!  We let you go in the name of love!

Levi's footprints

What Mother’s Day feels like

Who goes a day without checking any social media? Actually, who goes more than 3 hours without checking any social media? Be honest...the answer is no one! Correction, no one from my generation. And that generation includes women who are wanting, are having or have had children. And, out of those who exist within said generation, who did their own social media post last weekend for Mothers Day? The answer...I would guess about 95%.

So, like Christmas, it comes but once a year and for a grieving Mother it’s no longer a celebrated day but a dreaded one. One where you check social media because it’s your habit but you know it’s going to sting. You maybe post about your angel baby to of course, acknowledge your existence as a mother or if you have living children you post about both your living and angel babies. It theoretically will make you feel better or like you are involved in this day. You notice all of the people acknowledging their own mothers, their children, perhaps they’ve even acknowledged “grieving mothers” or those “struggling with infertility” as if they understand what you’re feeling. But, for those of you who do not belong to this sacred and oh-so-painful club, this is what Mother’s Day feels like and what those posts feels like...

It’s painful. It’s exhausting. It’s emotional. And, if a mother also has living children...it is complicated!

While adding a nice graphic or shout out to those struggling is a nice thought, I hate to admit it, sometimes is a bit infuriating. I know everyone has seen this graphic:

This is a lovely thought. But, I saw this one on I want to say 20 posts last weekend. So, again, it’s a nice thought but to me, this doesn’t show me you see me. This shows me you feel badly for posting your own thought out photo of your own family and re posted the same graphic that everyone else did without looking for something or saying something authentic and personal. While I can appreciate that you might not know what to say or do, can I suggest that you don't post a generic graphic and rather reach out to anyone you know personally? or send a small gift that says you spent some time thinking about what would make that mom feel a tiny bit better.  

To be 100% honest, since having Kyla here, Mother’s Day is bearable but it’s far from joyful. She brings a bright light to my life every single day. I also miss Brady and Levi, every single day. And, watching other happy families celebrate Mother's Day without complication is painful.  It's not their happiness that is painful, it is my lack of 100% pure, uncomplicated happiness that is painful and those photos are triggers. 

Mother's Day for grieving mothers (and Father's Day for grieving fathers) is not simple.  It's a trigger.  It feels both like something you want to sleep away and something you want to continue to be recognized for.  It's impossible.  You're a mother if you feel like you're a mom.  Whether that be to an angel baby, to a living, healthy child, to an adopted or foster child, to a niece or nephew that you are close with, to those that live in your heart and mind and that you hope to have some day... they come in all forms.  But, on Mother's day, those who have lost their little ones to the heavens above can't see that.  They only see the void.  And, that's simply because it's a day that, like Valentine's Day, highlights a specific population, one that a grieving mother instantly feels like she does not belong to.  It's a trigger!

I am not suggesting that myself or any of my fellow angel mamas out there are not happy for your happiness, or that we expect you to know what exactly to do or say on any day, especially Mother’s Day.  It is merely a snapshot into what it feels like to be an angel mama on this day. So, next Mother's Day, if you know someone who might be struggling, just mention their name. Mention their angels name.  Don't post something impersonal, make it personal. Because it's always personal to them.

Much love to all my fellow club members. Especially those I know personally. And to our babies who live in the sky: Brady, Levi, Mikayla, Hope, Oliver, William and Addi...We love you! We MISS you! You live in our hearts on Mother’s Day and every other 364 days of the year.

What to Share?

I had mentioned in a past blog post that my pregnancy with Kyla was largely kept quiet and that I would explain that decision in a future post.  Well...the time has come.  It's lengthy, but the reasoning would not adequately be explained without the length.

When it came time for our IVF transfer in the Summer of 2017 (which would eventually lead to Kyla) we were only about 3 months past the miscarriage (and subsequent D & C) that was a result of our first IVF transfer.  And, that miscarriage was just under a year after we lost Levi and a year and a half after losing Brady.  So, needless to say, we were feeling very nervous and guarded as we approached our second transfer and fourth potential pregnancy.

I should also mention that we use IVF for a fairly unconventional reason.  It is not due to infertility but because we have to have each fertilized embryo tested for the genetic 'spelling error' that exists in myself, Brady and Levi.  That being said, we cannot do this with every local clinic.  So, after a bit of research and soul searching, we found the Ottawa Fertility Centre.  Yes, you read that right...Ottawa.  That's about 5.5 - 6 hours from where I live. The whole process takes longer, is more expensive and has several more variables to consider than the traditional IVF route.  That's not to mitigate the traditional IVF process, merely to illustrate the weight of this process emotionally on us following several losses.

We were heartbroken after our miscarriage because it's another loss but also because it seemed like this was the answer.  This IVF process ruled out the factor that had taken our other babies.  We hadn't even considered that there could be another issue.  As long as it worked...we were pregnant! So, leading up to this (the second) frozen embryo transfer, we decided to at least, keep it quiet for the first 12 weeks and then decide how to proceed.

We were driving to Ottawa at the end of June 2017 under the pretense that I was accompanying Neil on a work trip to Moncton, New Brunswick.  No one knew we were on our way to Ottawa. But, about half way there we realized, we are heading to the capitol of the country and will be there for not only Canada day (July 1) but Canada's 150th birthday celebration.  Thousands of people were going to be there.  Thousands of variables, potential violence etc.  Maybe we should tell someone where we will be?  My sister-in-law was that person.  The one and only person who knew where we were and what we were doing and the only one that would know anything up until 12 weeks time.

Fast forward a few weeks and we find out we have a positive pregnancy test.  We kept the promise to ourselves and did not reveal anything for 12 weeks.  We managed to get through birthdays, a camping trip, a wedding and plenty of hangouts without letting the cat out of the bag.  At 12 weeks, we revealed to our parents that we were expecting and asked that they not share the news.

The more time that past, the more I realized not only was I nervous for the health of our baby but also, really began to empathize with anyone struggling with infertility, anyone who had suffered a pregnancy or infant loss or anyone suffering in general.  It really brought me back to the past 2 years when I was the one struggling and would watch pregnancy announcements pop up on social media.  It wasn't that I wasn't happy for the person but, there was always an ache and when a new post would pop up... that ache turned to a stab.  I realized I never wanted to be the person creating the stab wound to anyone else.  I'm not trying to suggest that this news should never be shared, but after our experiences and feeling those feelings myself...I had a different perspective.

Decision Made:  We wouldn't post anything or share anything about this pregnancy if it wasn't in person to people that are actively in our lives!

Friends that I saw on a regular basis found out when I saw them and they saw my belly.  And, extended family that I circumstantially didn't see, didn't find out until after Kyla was born!

It was a chore and it might not be the right decision for some but, this route protected our hearts from the expectations of others and from the vastness and pressure that comes from sharing your life online.  It was the right decision for us.  And, once she was here and healthy... no one cared how they found out.  Everyone was happy!

Since I didn't post any progress throughout my pregnancy with Kyla, I'll share some shots now...

Bumpdates 2017 /2018

Friday Coffee Chat

It's finally Friday so it's time to wrap up the week.

Neil's birthday was on April 24 but we decided to have a small celebration on Saturday (the 27th) instead.  So, we (Neil, Kyla & I ) met my parents for some lunch which was nice.  I love going out for lunch. As long as it's at a time that we can manage a fairly decent nap schedule for Kyla. This was perfect timing.  We also closed out the evening with some friends at a local pub.  Nothing fancy or over the top but just an excuse to get together.

Sunday was one of my favourite days of the year...in-studio dress rehearsal day.  As many of you know, I do work part time at the dance studio I grew up at.  And, Sunday was the day that happens every year where all the competitive kids come in and run their numbers in costume, in front of each other.  It's an opportunity to actually see everything, support your fellow dancers and spend time together as a team.  It was my favourite day when I was the dancer and it's still one of my favourite days as a staff member.  And, this year, I was able to bring Kyla for about an hour of the rehearsal and she seemed to be thoroughly entertained by all of the dancing. 

*apologies for the quality of these photos.  Taken on an i phone that probably needs to be replaced but I'm refusing*

Monday was a low-key day for Kyla and I but we wrapped it up with her Monday evening swimming lesson which is always a highlight of the week.  It's a nice time for Neil to be able to spend with her each week that's just theirs.  However, this night she lasted about 10 minutes before screaming at the top of her lungs and we had to leave so we didn't ruin everyone else's swimming lesson.

On Tuesdays Kyla and I usually venture to a local moms group.  It just allows for us to spread out and hang out with some other mamas and babies. Here is is stealing toys from a fellow baby friend.  She's the resident kleptomaniac of the group.  

Wednesday was the 1st of May.  Which, in addition to being my own personal marker for Spring, the first of the month always marks a new promo for doTERRA and thus, an exciting day in our house.  Promotions are always fun to announce and this month is great!  Check out the Simply Well Facebook page if you're interested.  Our diffuser blend for May 1 2019 was the blend below and it didn't disappoint.

Today through Sunday is a dance competition weekend (it's a busy season) so, I'll be spending my weekend at the theatre cheering on our studio and I cannot wait!  

What is everyone else up to this weekend?

Gift Guide for the Modern Crunchy Mama

With Mother's Day approaching, everyone is on the hunt for the perfect gift for their Mama, me included.  So, as a Mama myself who is all about a more natural approach to, health, wellness and well, life in general, I thought I would round up some ideas for my fellow modern crunchy mamas out there.

1. Matt & Nat REITI Bag - I LOVE purses and I really love this Mat and Nat cross body bag.  I adore the caramel colour and the casual cross body option for Summer.  Summer clothes always seem to be a bit more casual and this just matches perfectly while staying really stylish.  But, the best part about this bag is that it is made out of vegan leather.  It is completely cruelty free!

2. Sick Kids Get Better Gifts -   As a mama, the most likely thing you wish for your children is their health.  The Hospital for Sick Children, is a hospital that is exclusively pediatric and cares for those children that lack their health. Get Better gifts give you many options for many different price points all providing the hospital and/or it's patients with necessities. I know you've read my last post about little Addi. And although she was primarily cared for at McMaster Children's Hospital (another pediatric centre) she did receive care from Sick Kids as well.  I can think of no better way to spend your gift money than on the care of kids that need it.

3. Lululemon Align Leggings - I am a Lululemon lover and as a mama that generally works from home, leggings are a staple in the wardrobe.  Dress em up for playdate or dress em down for the gym, they work accross the board.  But, what I love about these leggings in particular is the high waist.  New mama belly?  Yep, these are your best friend.  In full disclosure,  I have heard some negative reviews regarding the management of this company but, for now they're the best I can find.

4. doTERRA Mothers Day Collection - This collection sold out SO fast.  It was brought back for a short time and then sold out again.  So, while you cannot get the full Mother's Day collection, I had to mention it because of it's beauty.  As well as, the Citrus Bloom oil, is being brought back maybe for good.  This blend is absolutely beautiful.  It is the perfect blend of cirtus and floral which is just perfect for the ladies in your life.

5. Vegan Cookbook - I love the Oh She Glows cookbooks.  I have her first cookbook and make those recipes frequently.  My favourite is the Cheerful Vegan Nachos. These have wonderful, flavourful and generally easy to complete recipes for vegans.  And, if your mama is an animal lover at all, it's a nice idea to try a vegan recipe here and there to limit your animal protien intake and explore other plant based options. I promise, it's delicious. 

6. Money Tree - Who ever said money doesn't grow on trees?  Well... I suppose it doesn't but a money tree is meant to bring good fortune to it's owner and this option actually gives you (the owner) a chance to plant the tree.  This allows you to watch it grow and thrive all while, theoretically,  watching your bank account grow and thrive.  That's a GREAT gift for mama.

7. doTERRA Rose Hand Lotion - Hand lotion is always a wonderful little gift for anyone.  But the doTERRA lotion is great for a few different reasons: It smells like roses which is so luxurious and feminine, it works so well to moisturize your hands which is a necessity for mamas who are always washing their hands after preparing food, wiping bums, playing with kiddos, grocery shopping etc.  AND the best part is that the profits from this rose lotion go directly to doTERRA's Healing Hands Foundation.

8. Beauty Counter Mini Lip Gloss Collection - I love Beauty Counter cosmetics for it's purity and 100% safe ingredients.  Not only is it completely safe for you and your kiddos (should they get into your make up or if you're an expecting mama), I find that it works and looks even better than my old-school Sephora make up. And, this little lip gloss collection is such a fun little gift.  It's always fun to add a little colour to your make up routine.

Share a little love with your modern crunchy mama next weekend!
Happy Early Mother's Day to all the Mamas out there.

We Remember

I'm veering away from a typical post this week because today, we remember Addi!

If you read my post last week about the Walk and Wheel for Mac Kids then you may recall I mentioned a little warrior named Addison who was fighting Acute Myeloid Leukemia and spent most of her journey at McMaster Children's Hospital.  Sadly, Addi lost that fight earlier this week.

Today is her memorial service!

So, today while I am still reaching out for donations to the Walk and Wheel, the charity of choice that Addi's parents have selected is C17.   "C17’s goal is to improve outcomes & quality of life for children with cancer & serious blood disorders in Canada. Currently, only 5% of donations to cancer research go to childhood cancer. Together we can help to grow that number, to save the lives of many other little warriors fighting their battles with childhood cancer in Canada."  

Circumstantially, I used to work for an organization that partnered with C17, so am aware of the good work that they do in the world of pediatric oncology in Canada.

So, if you know Addi or have followed her story, you've likely already donated because, how could you not?  But, if you haven't yet donated or if this is the first you've read about sweet Addison, check out her Facebook page and consider donating to this worthy cause in her name.  

"If you've seen the love that's in her eyes then everything is good, and if you know the way she felt inside, she's flying where she should.  I never believed we'd live to see an angel being born and flying home"  Flying Home - Chantal Kreviasuk 

Walk & Wheel for Mac Kids

This post might get a tiny bit lengthy, but it's a post that is SO close to my heart that I pray you'll stick it out until the end.

As most of you know, Neil and I lost our son Brady back in 2015 to a disorder called Urea Cycle Disorder.  And his particular form is called Ornithine Transcarbamylase deficiency.  We found out in 2016 that we were pregnant with another male with this same disorder and lost him as well.  So, considering all of this, we became very familiar with the disorder thanks to the genetics staff at McMaster Children's Hosptial, in particular Dr. Mariya Kozenko. Dr. Kozenko has been with us from the moment that Brady was transferred into Mac's care and is still our resource for all things genetic.

Our daughter Kyla, has also had her fair share of McMaster stays.  When she was first born, she was double checked for the same disorder as her brothers (she was tested as a wee embryo before IVF but this was a due diligence kind of test) and all checked out fine.  However, at 2 months and then again at almost 4 months (twice) she was hospitalized for a week at a time due to high fevers. It was determined that she has reflux in her ureter and the fevers were a symptom of repeated bladder infections.  She was prescribed an antibiotic (she's off it now) and currently sees the urologist Dr. Braga, who is equally as amazing as Dr. Kozenko, for regular checks on the state of her reflux.
Needless to say, we have been connected to McMaster Children's Hospital quite tightly since 2015.

Because of this, we ran a memorial golf tournament in honor of Brady, to raise money for McMaster Children's Hospital  for the past 3 years.  Last year, on the day of the tournament, was the day we had to rush Kyla to the hospital for her third stay because of a high fever.  So, following that and the stress it took to put on the tournament while caring for a small baby, it was enough for us to say, we need a break from hosting the fundraiser ourselves.  We were happy to be able to have a 3 year total of over $60.000.00 donated to the hospital in honor of our little guy and his name will now be on their donor wall forever!  That's the wall behind us in the photo.

Dr. Kozenko, Neil, Kyla, Nicole, Parker Neale (Hamilton Health Sciences Foundation)

3 year total donated by the Brady Fraser Memorial Golf Tournament

So, now that our fundraiser is not running (either for now or forever...we don't know yet) we decided to participate in a McMaster run fundraiser.  Our ties to Mac are so special and deep seeded that we never want to neglect that part of our story.  We simply didn't have the time or energy to devote to all the logistics of running a tournament ourselves.

This year, we have decided to participate in McMaster's Walk and Wheel.  A Foundation run fundraiser taking place on June 1st 2019 in Hamilton.  Neil, Myself, Kyla and our families will be walking in the Walk and Wheel this year in place of Brady's tournament.  And, we hope you will either join us, donate to our team or perhaps enter your own team.

I know many of my readers are local to the area so perhaps, you have had to stay at McMaster Children's Hospital in the past.  Or perhaps you are aware of little Addison Lawlor who is currently fighting like H*ll against Acute Myeloid Leukemia.  Addi is the sweetest little toddler who has had to endure a very arduous journey attempting to achieve remission status. I connect so deeply to her family and her horrific diagnosis.  Although Brady's was significantly different, children and families suffering... in hindsight, it's all the same pain.

So, if you connect with us personally, with Addi and her family or any family who has had to rely on Mac, please join us!  We would love the company and the support.  If you would like to donate to the cause, we would be so appreciative.  I've included the link to do both below.
You can also elect to sign up your own team and fund-raise in support of your own loved one.

Click the icon below to support Kyla in her "walk" for her brother or walk with us!!!

Thank you for your support,