This is 36

Photo: Copyright House of Kosi

Yes, I shared my age.

No, it doesn’t bother me – obviously.

Yes, my birthday is a national holiday in our household.

Yes, I make my husband take the day off to celebrate me (as he should haha).

No, he does not like birthdays.

Yes, he humors me. He likes to follow the happy wife, happy life philosophy. Smart guy.

Now that that’s all out of the way, here’s a recap of my birthday last week.

I have always loved my birthday. In general, I am not a fan of attention and feel like I’m fairly socially awkward. But on my birthday, it’s different. I think the urgency to celebrate is more tangible now with everything I’ve been through. When you deal with chronic health issues over time and face your mortality, celebrating another trip around the sun is simply a requirement in my opinion. Maybe that’s just me, but I’m so dang thankful for every year I have. I know it’s not guaranteed. PLUS, I mean…I grew, birthed and nourished a baby this year – an incredible one at that. That deserves celebrating.

A couple of weeks ago I asked my husband if he was taking my birthday off – more to confirm than to ask (see above). Lol He said yes and that he had a surprise planned. Who are you?! Just kidding. I was blown away but also super curious. Every time he mentioned my birthday I’d sneak in a, “What are we doing?” He didn’t slip, though.

We had an hour drive and until the last minute I had no idea what we were doing. Wait, I should mention that next to my birthday, Christmas is my all-time favorite. I just love all of it. I affectionately call my husband the Grinch because he despises it. Are you noticing a theme here? We even have a Festivus for the Rest of Us sign (Seinfeld reference) as part of our holiday décor.

We arrived at a furniture store. Odd, but then I saw a sign for The Enchanted Village. I had no idea what it was but I knew it was Christmas-themed and we were enjoying it as a family on my birthday. What could be better?

The Enchanted Village is a New England staple that started decades ago thanks to a local department store. When my husband was little, his Mom would keep him out of school to visit. This furniture store took it over. And my goodness, it is incredible. Holiday family photos, Christmas displays, light show, Polar Express ride in 4D, ice skating and photos with Santa.

Photo: Copyright House of Kosi

The little guy met the big guy for the first time and you’d think they’d known each other forever. For every other child, they had to make a concerted effort to get them to laugh or even look at the camera, and not cry. Callan? He loved every moment. And Santa did too, apparently, because he spent extra time with him and told the other kids to wait because, “We’re hanging out.” These photos are just classic Callan, and something we’ll always treasure.

Photo: Copyright House of Kosi

A big thank you to my hubby for planning this incredible birthday surprise for me and for us as a family. It’s absolutely going to become a tradition for us. Happy Birthday to me, indeed.

Let’s talk cancer complications

Photo: Copyright House of Kosi

This is my paternal grandmother and I on our wedding days, 73 years apart. Seeing the incredible resemblance never fails to take me aback. But it also hurts my heart because I never got to know her. She passed from breast cancer when I was just 3 months old. This is just one example of what I mean when I say I’m not blind to the sheer devastation cancer is capable of. Cancer knows no bounds. It’s wreaked havoc on my family, so I’m even more aware of just how lucky I am.

Sharing my cancer story with you all last week was a bit of a vulnerable moment for me. My health in general has always been a battle that those closest to me know full well. But I’ve never shared details at length. It was also a bit liberating. I realize these topics I share can be a bit heavy at times but it’s my reality, though I choose to view everything in as positive a light as possible. There are some light-hearted, non-health related posts to come, promise! But regardless, thank you for the amazing support.

The ultrasound results I had been waiting for finally came back this week: negative for any cancer reoccurrence. I don’t have to be tested again for a year, which is worth celebrating every.single.time. That being said, I still deal with the fallout from cancer daily. I had, and still have, countless complications. Here they are in all their glory.

Keloid scarring
This is when a scar doesn’t heal properly and instead is uneven, bumpy and almost 3D. I was almost guaranteed to have a keloid scar due to the trauma that area went through (allergy to surgical glue, two surgeries only 3 months apart using the same incision, sub-dermal sutures, etc.). It can also be painful. Having a scar wasn’t a big deal to me, but having the pain associated with it was. There are a ton of scar products on the market. I ignored them and went straight to organic maracuja oil. I’ve used it daily on my face for YEARS and swear by it for all skin issues. Knowing it to be a great anti-inflammatory and moisturizer, I thought this would work over anything. And it did. My scar is now flat and no longer painful. It’s a miracle oil. Definitely try it if you have ANY skin issues and report back to me. 🙂

Loss of taste
In January 2013, I went through radioactive iodine treatment as the final stage in my cancer treatment. If you’re not aware, it involves prepping with a special diet for weeks that starves your body of iodine. The day of, they put you in a room and have someone in a hazmat suit arrive with a heavy lead canister. They remove a pill from the canister with tongs and hand it to you to swallow. I can’t tell you how bizarre that feeling was. I knew that losing your taste was a potential side effect but was also told to stimulate the salivary glands with sour foods and that would prevent it. I did everything. And I thought it had worked, until a little over one week post-treatment.

I left my yoga class late one night and stopped for the blandest, most disgusting sandwich I had ever eaten. I blamed possibly stale, end-of-day bread. The next day I had my nuclear scan and grabbed a drink from the hospital cafeteria. It tasted awful. I couldn’t even choke it down. By the next day I realized I was losing my taste. In a moment of panic, I ran to the store on my lunch break and bought the sourest candy I could find. I figured if I couldn’t taste that, then I was in trouble. MY TASTE WAS GONE. My doctor assured me it would be temporary, and it was. But it lasted for months. As weeks went by, I lost interest in food. When you can’t taste it, what’s the fun of eating it? Through it all, the one thing I could taste was vanilla spice lattes. I lived on them, which is probably why I can’t look at them now. My taste came back in Jamaica, and I 100% credit the amazing Jamaican spices for that. I remember being on day 2 or 3 of a girls’ trip when it occurred to me that I was literally elbow-deep in a jerk-flavored dish BECAUSE I COULD TASTE IT. I sprinted to the buffet and grabbed every food I could to test it out. My taste was back, and has remained since.

Regulating thyroid levels
I was four weeks pregnant. The memory is vivid. The level of fatigue I felt was NOT normal, even for early pregnancy. I could barely lift my limbs. I couldn’t form coherent sentences. I thought back to my specialist saying that it can be tricky to be pregnant post-thyroid cancer. For several reasons, but in particular ensuring you have the precise level of thyroid hormone (not too little or too much) at any given time to function and also support the pregnancy. He had told me to call when I found out I was pregnant. I planned to, but we had just found out ourselves and I thought oh I’ll call him next week. But I knew something wasn’t quite right. I had lab work done same-day and he called me that night nearly exasperated. He couldn’t believe my numbers. My levels were practically non-existent. He said, “Get to the pharmacy NOW. You need the new dose ASAP.”

Your thyroid is responsible for ensuring that many vital systems in your body work. Essentially, the baby had taken all I had. He left me with nothing and my body could not keep up. It was a constant battle during pregnancy, though, and post-pregnancy is still proving to be something that is extremely difficult to manage with all of the changes I’ve gone through. Some weeks my levels are too low. Others too high. I’m never where I need to be. It’s frustrating. Mostly, because when your thyroid is out of whack, so is everything else. And every time they change my dose, it takes my body a good 4-7 days to adjust and I feel like total garbage until then. It wouldn’t be an exaggeration to say the majority of each month I’m in a state of flux and not feeling well. It just is what it is at this point.

Dead parathyroid & calcium absorption
It was probably a couple of weeks after surgery #2 when I knew I was in trouble. The unthinkable happened – a situation I was told to watch for via my hospital discharge papers, in all caps and bold font, no less. A situation that the doctors said if it happened, it’s considered a true medical emergency, go to an ER immediately and call my surgeon. It started with me forgetting something upstairs and I ran up the stairs to get it – something I assumed was fine to do. But my elevated heart rate precipitated the event. The tingling instantly became so severe from my forearms to my fingers that within seconds my fingers on both hands slammed closed. They were literally STUCK. I couldn’t pry them open no matter what I tried and the cramping pain, oh my the cramping pain. I was terrified.

Attached to the thyroid is the parathyroid – made up of four glands. One of the risks of thyroidectomies is your parathyroid can easily be injured or killed due to its location. Like the thyroid, the parathyroid is hugely important for your body to function properly. It controls the level of calcium in your blood and bones. I’ll admit – before ever having to deal with this, I assumed calcium was only needed for bone health. Not the case. It’s involved in proper muscular and nervous system function as well. As it turns out, my parathyroid was killed during my 2^nd surgery.

This is a complication I still deal with daily and will for the rest of my life. The only way to manage it is with proper calcium dosing. Most of the time, we get this right. But if I get numbness in my face, hands or feet then I know to increase my dosage. The average calcium supplement for women is 600mg a day. Right now, I take more than 4,000mg, in addition to another pill (2-3x a day) that helps me absorb the calcium. I need to get that much in my system to ensure my body can absorb just a part of that and what it actually needs. The amounts vary over time since I have it monitored every 6-12 weeks or so. I’ve earned a permanent sidekick my husband lovingly named my BOP – my bag of pills. It’s all calcium – easily hundreds of pills. I carry it with me everywhere and it makes an appearance at every single meal. For my thyroid, my calcium issue, all of my other health ailments and supplements included, I take more than 20 pills a day. One of my biggest pet peeves is when people say they don’t want to take medication or they aren’t thrilled with taking one pill a day. Like I want to? Absolutely not, but I have no choice. The alternatives are too scary to think about.

Cancer complications suck, simple as that. There’s really no euphemism for it. But the complications are sacrifices that mean I’m still here, living and overall – healthy. And so I just deal with it, some days better than others. It’s a lot to contend with. There have been times I’ve completely fallen apart out of frustration and exhaustion over the process and the unfairness of it all. I’ve been through hell and battle every single day to keep my health in check. It can be overwhelming. But I give myself grace because I’ve learned that it’s okay to have the ‘why me’ moments, to give in and shed the unbearable weight however you need to. When you’re faced with your mortality and the fallout, you need to let these moments happen. It’s how you push through. I may not feel strong every day, but I know I am. I’ve always been a fighter and always will be.

I’m a cancer survivor

31 weeks pregnant with Callan – Photo by Sara’s Photography

Every story has its scars. And every scar has a story. Here’s one of mine…

It’s been more than five years since my cell phone rang at work. April 4, 2012. I had a feeling it wouldn’t be good news so I snuck into an empty conference room. My doctor had reviewed my latest biopsy results and told me, “It’s VERY likely you have cancer.” It doesn’t matter which type of cancer you’re facing or what your prognosis is, hearing those words is absolutely terrifying. I remember feeling the floor crumble below me, pulling me into a thick fog of shock and fear.

I had multiple nodules near my thyroid that had been monitored for years. And I had countless traumatizing biopsies (I can still feel the needle going through tissue and muscle in my neck) with the knowledge that if any of these nodules grew at any point in time, it may mean cancer. For many years I was in the clear, but this time it was different. I had my first surgery within a month. In May 2012, I had a partial thyroidectomy to remove half of my thyroid. I had a bad feeling and begged for them to remove the entire thyroid but due to guidelines –questionable at best – they couldn’t. Almost immediately I was plagued with complications. The incision itched incessantly and developed a white growth on it that turned out to be a severe allergy to surgical glue. Only a couple of days post-surgery, the doctor ripped the glue off in one fell swoop, leaving my yet-healed incision open. He nonchalantly said just don’t make any sudden movements. I was petrified to move for weeks.

When the results came back, they found papillary thyroid cancer. They gave me the option to keep my remaining thyroid intact and just monitor it with ultrasounds and biopsies, or have the rest removed. I felt like a walking time bomb so I opted to have the rest removed in August 2012. Because of my surgical glue allergy, they had to do sub-dermal sutures and cover the incision with a bandage. As soon as I woke up from anesthesia I was clawing at the bandage to get it off. I knew I was allergic to the adhesive on that too but knew it needed to stay covered. Medical staff didn’t believe me and finally at the surgical follow-up the doctor removed the bandage and yelled, “Oh my god – you’re allergic!!” My response? “No sh**. I’ve been telling you that for days.” I’ll spare you the nasty photo I took of just how traumatic the allergy was. The incision never quite healed right and developed into a keloid scar, thanks to the allergy and also the trauma of two surgeries in the same spot only three months apart. It’s faded a bit over time, even more since the photo above from nearly a year ago. But I never cared much – I wear it proud.

When the results from surgery #2 came back showing more cancer, I wasn’t surprised because I suspected that would be the case. This time, though, it was follicular thyroid cancer, which was slightly more aggressive and had nearly broken through into my bloodstream. Bottom line, I’m lucky I did the surgery and had everything removed when I did. In January 2013, I completed radioactive iodine treatment as the final stage, including a strict low-iodine diet for the weeks before and followed by a five-day quarantine.

I have been ‘clear’ for years, but that doesn’t mean it’s not a daily presence in my life. I still get annual thyroid ultrasounds and am currently waiting for my latest results. They’ll likely be fine, but as a cancer survivor you don’t believe it until you hear it. I still get bloodwork every 6-12 weeks. Soon, I’ll dive into the other complications I had and still live with five years out: loss of taste, the constant issue of regulating my thyroid levels, living with a dead parathyroid which means taking an obscene number of calcium pills a day…the list goes on.

But the truth is, I gladly take these complications on because it means I’m still here living and cancer-free. I could easily get bogged down by it all, but instead I choose to be grateful and recognize how lucky I am. I’m not blind to the sheer devastation cancer is capable of. In my immediate family alone, we’ve lost too many loved ones and watched too many fight valiantly. Cancer knows no bounds.

For now, I’ll leave you with this…

It’s incredible what one person can endure. What one person can survive. How much, and how drastically, things can change. I always say I’ve lived a lot of life for my age and that’s partly because 2012 was one of the hardest years of my life. Facing cancer was like being on a rollercoaster that was at times almost too scary to stay belted in. I’ve reached overwhelming lows but also remarkable highs. If you had asked me back then if I EVER imagined where I’d be right now, I would have called you crazy. My current life was never on my radar. But I’ve survived. I’ve grown. I’ve thrived, despite persistent battles and the toughest days I ever thought I’d face. I’m a better person for it all.

And quite honestly? I wholeheartedly believe that my battles have shaped me to be the exact Mama that Callan needs and will need as he grows – one with a fighting spirit who refuses to give up. One who is grateful for life every single day – even on the harder days. I already see some of these qualities in our boy and I’d like to think I have some small part in that.

Family above all

Photo: Copyright House of Kosi

I talked about being a full-time working mom recently, here. What I didn’t mention was that behind the scenes, we’d made a big decision. The gears were already in motion for a positive change for our family and we were just waiting for it to be official.

As of today, I now have every Friday off with my boy. I’m still working 4 full days a week but I think the one extra day of quality time will help in so many ways. Most importantly, it will give me more 1:1 time with my boy, which we both need. It will relieve a bit of the pressure I feel regarding his development, which I mentioned here. I think it will alleviate a bit of the mom guilt (for lack of a better term) I felt as a full-time working mom. (FYI if you’re a full-time working mom, I give you all due respect because it ain’t easy to say the least). It will make our weekends a bit slower paced since we tend to cram so much into those two short days that we wear ourselves out. We can hopefully take care of some appointments on Fridays, too, though we admittedly don’t have many options for some specialists.

I’m just really excited to dedicate more time to my boy. My priority above all – appointments and therapies included – is for Callan and I to continue to build as close a bond as humanly possible. Right now, that means we need more time. I know we are lucky to be able to do this and I am truly grateful for the ability to make this change. I’m grateful for a supportive husband who knows how beneficial it will be to our boy and who immediately vowed to make it work. And I’m grateful for a supportive team and corporate environment that values employees and a healthy work/life balance. I realize that isn’t as common as it should be and I don’t take it for granted. It was worth taking the career risk to prioritize family over work because family comes first, no question. Callan will only be little once. I want to make the most of this time and give him everything I possibly can at this stage.

Today, we’re celebrating our first day of our new schedule with some needed 1:1 time and a fun playdate with some new friends in the T21 community. Here’s to a great start and many mommy & me shenanigans to come.

He’s a warrior. He’s strong. He’s the hardest worker I know.

Photo: Copyright House of Kosi

38 weeks, 3 days in VS. 38 weeks, 3 days out

Today – 11/8/18 – Callan has been here earth side as long as he was in the womb. With regards to children growing, I’ve heard it often mentioned that time flies. But I didn’t expect it to fly THIS fast. Pregnancy certainly didn’t! I always say that trying to slow down time is like grasping at the wind. No matter how hard I try, I can’t get a grip on it. As Callan’s Mama, I’m filled with equal parts sadness and pride. Sadness that these days are fleeting and my baby is so quickly growing up, and pride at just how much he’s thriving and the person he is becoming. I suspect every mom feels this way at one point or another.

In honor of his milestone today, I thought it would be fun to do a side-by-side comparison of my last bump photo (taken at the end of a FULL day of contractions that was later deemed early labor, so take it for what it is lol) and today. I thought it would also be a good time to cover where we’re at currently with Callan’s health and development, specialists, therapies, etc.

Callan was in a bit of a hurry to arrive (for no reason, really, except that he was just ready) and was born at 38 weeks, 3 days. He spent some time in the NICU for pulmonary hypertension. Essentially, he needed a little more time and supplemental oxygen to adjust to being outside of the womb. This warranted some extra echocardiograms within his first few months but it’s all been resolved and he has been discharged from cardiology – forever, we were told.

There were initially some concerns with his hearing but that has been deemed normal now. His vision is perfect and his thyroid levels are great. His hearing, vision and thyroid will all be retested and followed closely as he grows. He does have some chronic congestion, which is common in general but in particular with his anatomy. At his age, there isn’t much we can do for it, so for now we work closely with his pediatrician and ENT to keep symptoms in check. He recently started reflux medication, which is finally starting to help his symptoms and also congestion, so it is likely all related to a degree.

He just started speech therapy once a month. At only 9 months old, it’s going to be less focused on word usage and more on honing the skills to help him communicate via play. His initial consult went really well. His therapist was impressed by him and told us we should be really happy with where he’s at. We now have some good tips to keep in mind when talking and playing with him, and will adjust as he grows.

Callan does have hypotonia, or low muscle tone, which is a very common trait that accompanies T21. His is mostly noticeable in his core (which aids his reflux issues) and it’s the main thing we work with him on. We were VERY confused about what hypotonia even was initially. His physical therapist is the only one who described it in a way that we could finally understand. She said even though it’s muscle-related, it’s not a lack of strength. He’s actually incredibly strong. To demonstrate, she said if she was working with a baby without hypotonia and lifted his arm, he would likely hold it up or slowly lower it back down. She then held Callan’s arm up and it dropped. Granted he was only 6 weeks old at the time, but after that it made sense to us.

We have no doubt he’ll get to where he needs to be and will reach all milestones. It just takes extra work on his part (and ours) in some areas and targeted exercises for the tone to improve. He is still in PT twice a month and for the time in between appointments, his therapist provides us with ways to play with him that will help him reach his goals. Right now he’s working toward sitting up and crawling, and he’s getting closer by the day. He LOVES being on his tummy (moreso than any child his therapist has ever seen) and is fully capable of rolling, but prefers not to or at least is hesitant to. So we are working on that as well. While he does have low tone in his core, he did not require any help with his mouth, where lower tone can also cause some issues. He’s had no problem with breastfeeding, bottles and now eating solid foods – all things we were warned he’d likely require therapy for.

As a parent, I do struggle at times with the sheer number of appointments, specialists and therapies he has at such a young age. We of course are grateful for the doctors and programs that are available to help in so many ways. And we are all for any of it, if it will benefit him. But we also want him to have adequate time to just be a baby. That’s why we make a concerted effort to reassess often what is helping, what is not, what isn’t needed and then talk to his specialists/therapists and make changes accordingly. For example, he’s been in PT since he was 6 weeks old, but we nixed OT for now since we were seeing no benefit or need for it.

Something I also want to cover is what I struggle with at times – (likely self-imposed) pressure regarding his development. I KNOW he’s thriving and I KNOW I’m doing a great job as his Mama, I do. Both of those I never question and never will. But each day the question that does plague me is, “Did I do enough for his development today?” Enough play time, enough tummy time, enough rolling, enough sitting practice, enough exercises, enough signing, enough focus on motor skills, enough enough enough. As a mom, of course you feel responsible for your child’s development. But as a mom of a child with special needs, I almost feel personally responsible for each step. The only way I can explain it is if a child without special needs wasn’t taught a certain skill, he or she would likely learn it at some point anyway. But with a child that needs extra help in multiple areas, if I don’t teach him the skill, will he ever learn it? It may sound crazy, but I’m pretty sure I’m not alone in that thought and I’m working on putting it into perspective daily.

Bottom line, we’ll do anything in our power to help him grow to be the person he was meant to be. We’re just so damn grateful for him. He simply blows us away with his accomplishments. He’s a warrior. He’s strong. He’s the hardest worker I know. We celebrate him every day and every single milestone or new skill. We take none of it for granted, which is just one of the many lessons he’s taught us already.

Have questions? Ask away!

Team “Did I even have a part in this?”

Photo: Copyright House of Kosi

I mentioned here that Callan has Trisomy 21 (T21). So what exactly is it? Let me preface this by saying I’m no expert, but here is what I do know from what I’ve researched and been told by (lots of) doctors.

T21 is the most common form of Down Syndrome. It’s not inherited, and instead is a random event during cell division in fetal development. It means our boy just happens to have an extra copy of the 21^st chromosome. There is no such thing as a mild or severe case of Down Syndrome. You either have the condition or you don’t. What does vary person to person includes health issues, physical features, muscle tone, development, etc.

People with Down Syndrome are more prone to certain health issues related to heart defects, hearing, vision, thyroid, ENT and more. We are truly truly truly grateful that at nearly 9 months old, Callan is doing incredibly well in all of these areas. He has either been discharged or is simply being monitored over time by most of his specialists. I’ll share more details on where we’re at with it all in a separate post.

You may have heard that people with Down Syndrome tend to share certain features like almond-shaped eyes, a flattened nasal bridge, shorter fingers – the list goes on. But before you start assessing Callan’s photos, I can tell you this: he doesn’t have many of these features. And those that he does have, are similar to ours. I am told more often than you’d think that he doesn’t LOOK like he has Down Syndrome and no one would have ‘known’ if I didn’t tell them. I get it. I do. But there seems to be a misconception that everyone with the condition looks alike and that’s just not the case. They may share some features, but in reality they look more like their family members than each other and are truly unique.

The photo above is case in point. It’s a comparison of Callan and his Dad at similar ages. I like to say I’m on Team “Did I even have a part in this?” because he is very clearly his Dad’s twin and looks nothing like me. I do sometimes hear that he has my eyes so I’ll take what I can get!

Any other mamas out there on Team “Did I even have a part in this?” I’m curious – please share in the comments.

Thoughts on being a working mom

KL1267-0023 Landwehrle_K&C Photo by Kathleen Landwehrle Photography

Motherhood. Career. You CAN have both. But it would be a lie to say that during the work week you’re fully present in either role at any given time. Often, I wish more than anything that I could be home with Callan full-time instead. Then there are times where I’m proud of my career and accomplishments, and feel like I’m managing everything ok.

As moms, you hear the word balance thrown out there quite a bit. We’re expected to balance it all and to do it well, giving everything in our lives equal attention. But I’ve learned fairly quickly that expecting to balance everything well as a full-time working mom is a surefire way to feel like a failure each day. I now know that some days work gets more time/attention/brain power, and others, my boy does. It’s just how it is. And that’s okay.

Before Callan, I built a career in the marketing field and have been a writer for a health care company for years. I’m also a telecommuter, so I work from home full-time. It definitely has its perks. But I think some don’t quite understand that when you say you work from home – you WORK from home. You have projects, deadlines and goals to meet. You have countless conference calls, career trainings and project time you have to set aside or you don’t accomplish what’s required. The list goes on. There are high expectations.

I’ve been a full-time working mom for four months now and I’m STILL transitioning. I had four months of maternity leave – blissful, exhausting 24/7 time with my boy. Despite him arriving early, our NICU stay, recovery from birth, the ups and downs of breastfeeding, weight checks, in-home therapies, countless doctor visits and just adjusting to everything that comes with a newborn, it was the only time in my memory where I can recall not being stressed on a daily basis. And it came down to the fact that I am in LOVE with being a mom – HIS Mom. I’m obsessed with my boy and absolutely adored that quality time. I dreaded having to leave him and cried every day for the two weeks before I had to. The heaviness of emotions a mama feels in this situation is excruciating. I’m grateful for the time I had with him, but four months or less shouldn’t be the standard. Mamas need more. So much more.

We are SO lucky to have in-home care for Callan currently. Our family has been amazing watching him while we work and we love that he gets to build extra special bonds with them. On the flip side, this is also where working from home becomes difficult. Yes, I get more time with him since I don’t have a commute and can see him on my breaks. But I also hear him throughout the day laughing and playing, and I feel a constant pull to be with him. It takes every ounce of energy I have to focus my attention where it needs to be. Before I returned to work, I remember saying that I would either be super-efficient and disciplined OR it would all be a total sh** show. To be honest, I have both kinds of days.

When I went back to work, I didn’t have unreasonable expectations for the transition but I did think I would adjust quicker than I have. I found I had to almost retrain my brain to think the way it used to before baby. Things are different. YOU’RE different. It’s a lot to handle at once. There were several days that ended with me sobbing into my husband’s shoulder, saying, “I can’t do this. It’s too much. There has to be a better way.” I’m pretty certain I perfected the full-on ugly cry during that time. It was like being on the front lines of a battle I wasn’t quite ready for. But my husband was. Wise soul that he is, he’d told me it would take MONTHS to transition and I didn’t really believe him. It turns out he was right. Yes, I put that in writing.

All that being said – I leave for my first post-baby business trip in a few days. Since Callan was born, I haven’t been away from him for more than 4 hours or so. This is going to be HARD. I keep telling myself it will be good for me, for my career and Callan as well. I have full confidence that he will be just fine, especially with how adaptable he is. He’ll have some amazing quality time with his Dad and I’ll have some time to focus on me. But as the trip looms, the emotions are starting to weigh heavily on me.

Working mamas out there – if you’ve traveled for business after baby, what are your tips for making it through?

He is enough

Photo by Sara’s Photography

With the acceptance we’ve experienced, it’s still shocking how little people understand about Down Syndrome. There is a lot of misconception and confusion. And I’ll be the first to admit, we knew nothing initially and we’re still learning. But it’s so incredibly important to know how to discuss Down Syndrome, so I thought I’d share some insight from our journey so far.

I read recently that words – using the proper terms and tense when talking about Down Syndrome – are important. And it’s true. Most comments we’ve encountered from others are innocent and come from a place of little awareness. In fact, I can often sense the hesitation as they try to choose the rights words mid-conversation. There are some comments that immediately strike me hard and my protective nature revs into overdrive. Others, I’m not quite sure how to feel about just yet. Ultimately, my goal is to educate myself so that I can educate others.

First, I’ll level set this by being clear that every single person with Down Syndrome is an individual with different abilities. It’s not okay to say someone “is Down’s,” or to use the term “Down Syndrome baby,” for example. Instead, say someone “has Down Syndrome” or use the term “baby with Down Syndrome.” Semantics, I know – but these statements are not accurate, and making them opens the door for people with Down Syndrome to believe that they are defined by their condition. And they are not. They are NOT Down Syndrome. They HAVE Down Syndrome. We all have our own battles but it is imperative to us that Callan knows – and believes – that our conditions are NOT who we are.

Second, parents (regardless of age) have a 1 in 700 CHANCE – not risk – of having a baby with Down Syndrome. That word risk can be tricky. During my pregnancy, that terminology was used often and it has the innate ability to strike all levels of fear in a parent. RISK. I remember harping on that word while asking the universe how we even became that 1 in 700. The diagnosis didn’t fit what we thought our family would be. But with every accomplishment, full-body smile and giggle, this now-18 pounds of pure joy assures us that he is who he was meant to be, and that THIS – this is what our family should be. Someday we’ll tell Callan just how grateful we are that we weren’t the other 699. But for now, we’re busy showing him each and every day that he is enough.

Questions? Ask away! As I said, we’re still learning but I’m always willing to help spread clarity and understanding.

Irie

Photo: Copyright House of Kosi

I know, I know. I’m sure your first thought is how to pronounce irie (EYE-ree). Your second is probably what in the world does it even mean? It’s when you’re at total peace with your current state of being.

The backstory: You know those go-to doodles we all have? This was mine for countless years. I used to write this word everywhere. I’d always wanted a tattoo that held significant meaning so I knew this would be my first. When I got this tattoo in March 2017, the word irie wasn’t new to me, but feeling irie was. More and more I was finding myself encountering moments of clarity in life. Peace in both the quiet moments and the chaos. Peace with who and where I was.

It was also somewhat of a monumental time for us. I had been cancer-free for a few years, was newly married and we had decided to add to our family (I have two incredible stepsons). This meant coming off of the medications that had managed my fibromyalgia for nearly a decade. But it wasn’t easy. I was blindsided by nearly unbearable side effects for weeks on end and truly suffered. (Future post to come on that.)

This tattoo gave me something to hold onto when I needed it most pre-pregnancy, but as it turns out, especially during. I clung to it fiercely since it was a daily reminder of my ultimate goal. And when I took this photo almost exactly one year later in March 2018 – of my newborn’s hand near the tattoo – it felt like a full-circle moment. Those are the moments that matter most in life. Being present, happy and content right where you are, while recognizing and acknowledging the journey you’ve been on to get there.

If you’re struggling through something, know that you will eventually find peace, but understand that it will fluctuate day to day. And that’s ok. Want a helpful tip? Do this: At least once a day, take a deep breath. Visualize yourself inhaling peace and love…and breathing out stress, worry and the things you don’t need. It sounds silly but if you do this daily, you’ll slowly feel the weight start lifting enough to clear a way for you to be where you want to be.

Meet Callan

Photo by Sara’s Photography

Meet Callan. He’s 8 months old, wild and hilarious. He’s a little guy with A LOT of personality and even more to love. And our boy? He happens to have Trisomy 21 (T21), the most common form of Down Syndrome. We haven’t yet talked publicly about Callan’s condition because quite honestly, it’s not forefront of our minds. It’s just a part of our life – a beautiful part at that. We’ve spent 8 months solely focused on our boy and getting to know him for him. But October is Down Syndrome Awareness Month and what better time to share our story? It’s time we do our part on the path to inclusion and acceptance. And it’s time everyone gets a glimpse at the true gift our boy is.

We celebrate our boy and his accomplishments every single day. He may have to work extra hard but it’s all he knows and he does so without complaint. And he’s THRIVING. We owe that to his tenacity, our outlook and our village. We are raising him to be a good, kind human who knows he can do and be anything – because he can. Go to college? Absolutely. Have a job? Of course. Live on his own? Sure. Why not?? Why shouldn’t he? We have the same expectations for him as we do his brothers. We are committed to his development and are making it a point to foster his independence early on.

Full transparency: When we received Callan’s diagnosis, it rocked our world. There was a complex process of grief and acceptance that I think only parents in that situation can truly understand. Looking back, I know that needed to take place. When we first found out our odds were high, the words the midwife spoke on the phone shattered me and quite literally brought me to my knees. “BAD news,” she said forcefully, with an air of pity. At the time, the fear, the unknown, the worry was so incredibly tangible and debilitating while we worked through it all.

Fast forward to a year later. When I look at our boy, all I can think is BAD news?! I wish I could find that lady and teach her a thing or two about life, love and acceptance (we cut ties immediately). And while I’m at it, all of the other ‘specialists’ who advised us on more than a dozen occasions to proceed in a way that would mean this irreplaceable ray of light wouldn’t be here right now.

Our boy has already changed our lives for the better. And mark my words, he is going to change the world.