Where I’ve been…

Ironically, I posted in March 2019 about an unintentional break from the blog. That break was only for a month or so. And now here we are, a full 10 months since my last post. Again, not intentional but I think we can call this one a legit break. But you know what? Sometimes life takes precedence.

For those who don’t follow my social media attached to this blog (which I have kept up), you’re probably wondering where I’ve been. There are many reasons I’ve not been writing and they all kind of snowballed quickly.

Not long after my last post, the most debilitating case of vertigo hit me thanks to an extremely stressful travel experience, the pressure changes of flying, plus being susceptible to it. I’ve had it twice before but never this severe. It impacted every single part of my life. I became a shell of the person I am and struggled to still manage LIFE. I missed only a week of work but still worked through some incredibly hard symptoms and horrific days. I quickly realized that work and my day to day was about all my brain could handle. I had no brain power left for creativity outside of that.

And so…the blog fell away.

I’d go weeks with symptoms then weeks without. And it’s those weeks without where I chose to focus on and really enjoy my life and the moments when I was well. Plus it was summertime at that point, so I focused on my health, family and favorite time of year.

Then? I got pregnant with baby boy #2 and as all the mamas out there can attest – my brain became even more mush. I struggled from the beginning thanks to hormones and all the shifts your body makes even more quickly the 2^nd time around – anxiety, fibromyalgia pain with no relief, migraines and vertigo flares. One of those alone is too much but pile them together and add in the worry you have in early pregnancy, plus caring for my toddler – it just about did me in. I was mentally and physically exhausted – and still am – but just starting to feel a bit better overall despite the vertigo still making its presence known to this day.

I’ve thought about this blog constantly during my time away. I have a lot to say but sometimes think I put too much pressure on myself to have these largely impactful posts. That’s kept me from posting too. I’ve come to realize that that’s not always going to be the case. And I need to be okay with that, give myself some grace and just go with it. So here I am, back at it. No promises, though, for how often I’ll post or if I’ll take another break. We’ll see!

Bottom line, writing here is therapeutic for me and I do think some of what I share can possibly help others. I may not have many followers or readers, but I’m determined to keep this going for me and maybe that one person I may reach. I won’t have a set posting schedule or expectations, but I do have a lot of posts planned and hope you stick around to see what’s to come.

World Down Syndrome Day 2019

Photo: Copyright House of Kosi

Today – 3/21 – is World Down Syndrome Day. The date was chosen to represent the 3 copies of the 21st chromosome (Trisomy 21), the 3rd of which makes our boy extra special. It’s not just a day for awareness, but to recognize and celebrate the incredible people who have T21 and who make our lives all the better for it. The world wouldn’t be the same without them.

I’ll be honest, I wasn’t sure I’d post about this day. And here’s why…

While Callan is still so young, I find myself walking a fine line of wanting to raise him to be aware of his condition, but not letting it define him or be the main focus. Because it’s not and it really shouldn’t be. It’s a part of him, but not what makes him who he is. That being said, I also realize the importance of him accepting every part of who he is, and so…

Here’s to T21:

To inclusion and empowerment
To positive awareness and equal treatment
To breaking boundaries and stereotypes
To limiting fear and invoking hope
To proving that joy shines much brighter than the obstacles and tough moments

And to our boy, our brave warrior…we celebrate you each and every day. We always will. But it’s a day like today that reinforces just how incredibly proud we are to have you, to know you, and to watch you make this world a better place.

An unintentional break

Photo: Copyright House of Kosi

This is the 1st time I’ve caught Callan sleeping like this. Documentation is required – obviously. Why does finding your baby like this tug at your heart so much? It hit me harder than I expected…seeing him so peaceful. Because the truth is, he’s had a really rough week.

You may or may not have noticed (likely not lol), that I took a break from the blog the last 6 weeks or so. It wasn’t intentional. And it was really for no other reason than I simply had no extra brain power to do it. Between Callan’s birthday month, first birthday celebrations, unending appointments, work, obligations, being sick for 3 of those weeks and just – life – I decided to slow down a little and soak up the day to day instead of putting pressure on myself to share when I wasn’t really feeling it. It is what it is, right?

So…this week. It was physically rough for Callan but mentally exhausting for me. And I’ll preface this by saying – trust me – I know things could be worse. I count our blessings every moment of every day. But that doesn’t mean Callan doesn’t go through hard moments or that they aren’t stressful or traumatic for us.

Children with T21 often have thyroid issues and are at an increased risk of childhood leukemia. So we monitor his thyroid and CBC closely because of this. On Monday, I took him for his 1 year bloodwork. We have yet to have a good experience with bloodwork. Multiple people who can never find a vein and it’s just traumatizing on every level. Previous recommendations for “the best” haven’t panned out so I went straight to the children’s hospital this time. The good part? The phlebotomist got a vein on the 1st try and filled 3 vials in under a minute. The bad news? I had to hold him down while he screamed out of fear, shock and pain. But although he was upset, he did great and recovered quickly. Much quicker than me.

He needed further testing based on his Monday results and so Wednesday it was back to the same chair. Bloodwork TWICE IN TWO DAYS. We had no choice. His CBC was normal (thank goodness!) but his thyroid levels were off. At his age, thyroid not functioning correctly can impact growth and development among other things. They wanted a handle on this ASAP. Same phlebotomist. He took one look at her and knew what was coming. He looked up at me in sheer terror. He flailed and squirmed so badly I had to use all my strength to keep his body steady and my poor mom had to hold his head. I felt completely gutted doing this in the first place but twice in two days was just awful to say the least.

Results of additional tests so far are ok but we need to follow-up with a pediatric endocrinologist soon. Based on my personal experience and history with thyroid issues, I’m optimistic that we’ll manage what comes our way. But I also know how much it can impact daily life and overall health, so I’ll be a bit anxious until we get more answers.

But for now? I watch my baby sleep peacefully, at a loss for words when I realize just how much he lives up to the meaning of his name…and in complete awe at just how incredibly brave he is.

Our T21 prenatal diagnosis

Photo taken @ 19 weeks pregnant with Callan

With Callan’s 1st birthday looming, I’ve been thinking A LOT about my pregnancy, our diagnosis journey and everything that came with it. That time of my life feels almost like a war zone. Certain memories are hard to look back on, to articulate just how intense and painful they were. And they’re even harder to face again knowing what I know now and living this life with our incredible baby. For obvious reasons, this is probably one of the most difficult posts I’ll write. It’s raw, it’s authentic, it’s emotional. Here’s our story…

At our initial prenatal appointment, we were inundated with information. Prenatal testing was mentioned, including two different types of testing via bloodwork – the less intensive version that tested for chromosomal abnormalities and a more intensive one that tested whether we were carriers for a slew of what seemed like terrifying conditions. My husband and I discussed it at length and since the less intensive one seemed fairly common, we agreed to do it.

We had the blood work done at 13 weeks. And to be honest, although I knew what the bloodwork was for, Down Syndrome (DS) was NOT on my radar in the slightest. Why would my baby be anything but your average healthy baby? How could he possibly have a chromosomal abnormality? Why wouldn’t my 1st pregnancy be anything but bliss? It may sound naïve, but I don’t believe any mother would think otherwise. We waited two weeks for the results. Then at 15 weeks, my phone rang while I was home alone. My midwife called and emphatically said (almost yelled), “BAD NEWS, you tested high risk for Down Syndrome.” My heart started pounding visibly out of my chest, I couldn’t catch my breath and I became unsteady. Tears welled in my eyes until I couldn’t see beyond them, and as they fell, she asked if I wanted to know the sex of my baby. Although we hadn’t decided yet I said yes because in that moment I needed something positive to cling to. I needed to know who my baby was.

For 7 weeks we saw specialists and both researched extensively. My husband is a statistician and spent day and night going over the scenarios and percentages again and again. The thing was, NO ONE could tell us what our exact chances were. It was all guesswork. We saw one genetic specialist in particular who we both despise to this day. (It says a lot that another genetic specialist recently apologized for that doctor and how he handled our situation on behalf of the profession.) He had zero empathy, couldn’t speak to the numbers or explain anything we asked, and talked over the genetic counselor. Unthinkably – every time I’d ask a question – he would mention termination. In fact, in a week’s span I was asked at least a dozen times if I was keeping my baby. I get that parents have options and doctors need to inform them of what those are. And I will never ever judge other parents for their decisions in these situations. But here’s the thing – we NEVER asked about it. We had made it clear from the beginning that we were keeping our baby. I left every doctor appointment and hung up every phone call a shaky, sobbing mess. It was such a trigger for me. Why couldn’t anyone understand that this was OUR BABY involved? The last time someone from the midwife office asked me, I completely lost my sh**. I screamed at her, I cursed at her, I told her to put in big f’ng bold letters on the front of my chart that we were keeping our baby, he was worth it and don’t f’ng ask me again. Not my proudest moment but at the same time, it was, because I/we seemed to be the only ones fighting for our baby. We made it to a couple more appointments with that practice but it became quite clear that they were far from equipped to handle the potential of a diagnosis, let alone the reality of one if that was to be the case.

I’ve been through a great deal in life but nothing, I mean nothing, compared to the stress of those weeks. I borrowed a doppler from a close friend of mine so I could listen to Callan’s heartbeat whenever I wanted to. It’s not something to rely on, obviously, and I knew that. But in the midst of so many unknowns, hearing his heartbeat was reassuring and what I needed. At 18 weeks, I have a video of the doppler that captured both of our hearts beating together. As one. It was a pivotal moment for me. A reminder that I was his and he was mine. We were in this together.

By week 22 after exhausting all of the possible providers, asking thousands of questions and weighing all of the risks, we decided for my sanity and well-being, to go ahead with the amniocentesis. Despite witnessing my cancer battle and daily struggles with chronic pain, nothing prepared my husband to see who I was at that point in time. He was admittedly, extremely concerned. I was mentally and physically exhausted on every level. Above all, we wanted an answer so we could properly prepare for our boy. And we wanted to be able to emotionally deal with the diagnosis so we didn’t have to do so after his arrival. We weren’t too trusting of the doctors at this point. But the one who performed the amnio I am still grateful for to this day. She was kind, she was gentle with us emotionally and promised to be the one to call with the rapid 3-day (FISH) results. She made good on her promise and personally called a few days later. I took the call in my kitchen. I was home alone again. Our boy had Down Syndrome – Trisomy 21 to be exact. I fell to my knees, curled up in a ball and cried harder than I ever have in my life. The gut-wrenching grief kept me on the floor until my husband could get home from work.

We sat in silence for hours. What could we say? Looking back, now I know we were in total and complete shock. We knew nothing about DS. And we knew no one with a baby with DS. With the sheer number of people and children in our lives that DIDN’T have it, I definitely did ask why me or why us. I wondered if there would ever come a time where I’d look at other babies without asking that. As hard as that is to admit, I think that’s a normal part of the process.

We coped day by day. We both dealt with it differently, but were cognizant of that and checked in daily. We were open with all of our feelings – even the tough ones. By night three of crying myself to sleep, I sobbed into my husband’s shoulder for the final time. I said, “I don’t want to be sad about our boy.” And right there I could tell I had made a shift in how I was coping. We agreed from that point forward, we wouldn’t be. We would do what we needed to ensure positivity was wrapped around this new life we were bringing into the world.

We started sharing the news with those closest to us. The following weeks had lots of tears. At home. In public. I cried a lot. And let me be clear – it wasn’t sadness by this point. It was the enormity of the situation, the sheer unknown, debilitating fear and worry, unimaginable stress and anxiety. Family and friends rallied around us, lifting us up. At first that was hard because many said it will be okay. No one else had been through what we were going through so how could they know that? I can’t blame them. I would’ve probably said the same thing. Initially, I just wanted someone to tell me it may not be okay but that it was okay to grieve. But that was something we needed to do on our own, in our own time.

As the weeks went on, the initial shock wore off. We dove into research once again, this time doing everything we needed to adequately prepare for our boy. At the top of the list? A new doctor. We left the midwife practice. (I’m sure there are fantastic ones out there but our experience didn’t pan out that way.) We were now deemed high risk so we went with the most highly recommended doctor around. BEST decision we could have made. We loved him. He was easy going yet obviously confident in handling our situation. We were comfortable from day one until the day I gave birth. Next on the list? ENJOY THE PREGNANCY. We deserved that. Our baby deserved that. From then on, that was our focus.

Beyond our closest friends and family, we also didn’t feel the need to tell anyone Callan’s diagnosis. We started to view the diagnosis as simply a health condition (like asthma for example). We knew he’d have some challenges but it absolutely would not define him or who he was in any way. We didn’t even share with most people after he was born. And before I started sharing our story publicly, no one ever asked so we never brought it up. It wasn’t a secret. We just didn’t need to mention it. Now I do sometimes just because I’m so stinking proud he’s mine and of all he’s accomplished!

So to the parents who have just received a diagnosis or find themselves in a similar situation, I will tell you the one thing I wish I would have known then. A Down Syndrome diagnosis is not a devastating one. While you’re in it, yes it feels like the end of the world. Everything is shattered. But now, with a year of being Callan’s mama under my belt? All I feel is pure joy. Yes, there are hard times and some trials but that’s true of any 1st year of motherhood isn’t it? Every kiddo comes with their own circumstances. Back then all I could do was hope for how things are now. If only I could’ve seen it.

I’ve often cried when I look at my sweet boy’s face and think, “How could I have EVER been sad about you?” I remember holding him as a newborn, tears pouring down my face, saying that over and over again. It shatters my heart that I was sad at all, because just having a tiny glimpse into our life now would’ve instantly calmed my fears while pregnant. Although no parent would ever wish a diagnosis or any amount of struggle on their child, I honestly wouldn’t change our path. I wholeheartedly believe that Callan is who he was meant to be and that we were chosen to be his parents for a reason. I am forever grateful for him, the type of mama he has made me and the person he is helping me become.

How I stay healthy – what I eat and how I move

NOTE: This is simply my story and how I live to feel my best. What’s best for you may be entirely different! Also, I talk about weight here but don’t get hung up on it. It’s not about that. It’s about making the commitment to take control of your health.

About 4 years ago, I was at the heaviest I’ve ever been – 30 pounds heavier than I am now. I even weighed more than I did on the day I gave birth to Callan. I didn’t mind how I looked, but I was uncomfortable. I remember wearing that bridesmaid dress and tugging at it the entire night. My confidence was at an all-time low. I think everyone has a weight or size where they feel most confident. If that’s lean and strong, great! If that’s softer and thicker, great! At the time, I was working out 4-5 times a week, eating healthy and even doing meal replacement shakes. But nothing was working. I was also sick ALL THE TIME. Constant massive sinus infections, colds, viruses. I even caught BOTH strains of the flu that came through my area – within a two month span. Something had to give.

The dairy/immunity link
I met with a naturopathic doctor and one of the first things she suggested was that I give up dairy. The thought of that was ludicrous to me. I ate dairy every day, at nearly every meal. I put cheese on everything and lived for ice cream. I actually laughed because I truly believed there was no way I could ever do that. She said my immunity likely depended on it and with how sick I’d been, I decided to give it a shot. It wasn’t easy. I made small changes at first – cooking with dairy-free butter, using almond milk creamer in my coffee. I made more changes over time and it got easier. After the initial dairy detox, I learned that I could sneak some dairy here and there. I don’t do it often, but let’s be real for a minute. I’ve tried every dairy-free pizza there is, but if I want pizza, I go for the real thing. Or when my husband comes home with tiramisu – you can bet your ass I’m devouring that.

So what happened once I nixed dairy? My immunity skyrocketed and the weight started to come off more easily. Everyone is different but it’s obvious my body knows it’s not good for me. One question I always get asked is how I get enough calcium since I don’t eat dairy. My response? You don’t need dairy for calcium. That is a perpetuated myth. It can be found in lots of other foods. And even many non-dairy substitutes are often packed with it. For me personally, I get more than enough through supplements as I outlined here so any additional calcium from my diet is just a bonus.

What I eat
There is no label for how I eat, though if I had to choose I’d say I am mostly pescatarian with vegan tendencies if that makes any sense at all. Related note – I despise the word ‘diet.’ I’m a firm believer that diets don’t work, but lifestyle changes do. That being said – I don’t just avoid dairy. I also follow these ‘guidelines’ that I’ve adapted over time:

No meat. I haven’t had it for over a decade now. For no other reason than I just never liked it. I DO eat some seafood and have fish 1-2x a week.
Limit gluten/bread to a couple of times a week.
Limit soy. Soy of some form is in nearly everything it seems. My doctors had told me early on in my cancer battle that soy can impact hormone function which isn’t a great idea in general, but with my thyroid issues, that’s not an option for me. I’ll have some soy-based meat substitutes at times, but I try to avoid it for the most part.
No processed or frozen foods/meals. If I can’t pronounce or don’t recognize ingredients, I don’t eat it.
Limit pasta. If I do eat it, I opt for versions made with quinoa, chickpeas and/or brown rice.
No fast food. There aren’t many options for me anyway but a lot of ingredients are not clear cut. And things like fries are often cooked in beef flavor/fat/oil.
No soda of any kind. I used to drink one diet soda a day and never thought I’d break the habit but it was SO easy to nix. I don’t even miss it.
No excess sugar and also don’t drink sugar (like fruit juices) often. If I want something sweet, I’ll treat myself every so often.

It sounds strict, but it’s really not. I eat what I want, when I want. Today, for instance, I had both a green smoothie and vegan chai cupcake. Balance, people. I just eat in moderation and try to make healthy choices overall. I also graze. I eat a lot but I do so throughout the day. And most importantly? I give myself grace. If I have a poor day of eating, I simply start fresh the next day. And I allow room for treats. I have a big sweet tooth and know that if I don’t allow them, then I’ll be in the pantry at midnight elbow-deep in a box of cookies.

I’ve talked to so many people who say they could never eat healthy or eat like I do. You don’t have to! But you should eat for wellness. Is the food really worth it if it makes you feel awful physically? If it’s literally making you sick? If it’s keeping you from reaching your goals? To me, feeling healthy overall is worth making some changes and sticking to them. Find what works for you.

How I move
Like I mentioned here, I do what I can, when I can. It’s not easy for me by any means. I’m a mom now and exhausted for obvious reasons. I don’t sleep well in general. My thyroid is still never regulated which also lowers my energy. And on top of that? I have fibromyalgia, which I’ll talk more about at some point. I’m in pain every.single.day. For me, it means I need to move to feel better, even though it hurts to move at times. And yet, the more stationary I am, the more pain I’m in. Working out can help but it can also cause flares, spasms and more pain. It can be a vicious cycle that leaves me unmotivated to move. BUT despite it all, I still try to workout 3-4 days a week.

I was diligent in staying active throughout my pregnancy. I was lucky in that I was able to feel well enough overall to do so. Even on the days that I didn’t want to budge, I always felt better after I moved. That being said, I listened to my body and if I needed to rest then I did. I kayaked (holding onto strangers’ docks thanks to nausea lol), swam, did yoga and walked. Now, I do the same, sticking with low-impact workouts for pain management. I simply feel better when I do. Yoga will always be a favorite and I swim all summer long. I walk and do some strength exercises whenever I think of them – found moment workouts, if you will. Leg lifts while brushing my teeth or cooking. Ab work while the baby is playing next to me on his play mat. Squats while on conference calls. Whenever you THINK of working out, DO it.

Is it easy to workout often with a baby and everything else I have to contend with health-wise? Nope. But it’s important to me that Callan know how vital it is to prioritize health and wellness. That he knows he’s my why, not my excuse. And bottom line? A healthy, happy mama = a healthy, happy baby.

If you’re still reading at this point, I’m impressed. Now it’s your turn. What do you eat and how do you move to feel well?

Don’t wait for a new year to be who you want to be

I admit I like the thought of a new year and a fresh start. A reset of sorts. New year, new you, right? But what I don’t like? The pressure to reach nearly unattainable goals and unreasonable expectations. I’ve seen person after person set themselves up for ‘failure.’ I’ve been a gym rat at different times in my life and always dreaded the month of January. The gyms become overcrowded January 1^st, but by the end of the month? Everyone has cleared out. Sure, there are people who stick to their resolutions, but it’s not easy.

We are all works in progress. There are always areas I’d like to improve, things to do better, goals I want to achieve. And I truly believe you certainly don’t have to wait to the start of a new year to become who you want to be. So for me, I never set resolutions at the start of the year. Instead, I work on reaching goals day to day throughout the year.

If you haven’t picked up on it from this blog or my social media account yet, I’m quite health conscious. I have to eat well and be active in order to feel good. I’ve made lifestyle changes over the years that I’ve been able to adhere to. How? I follow these principles, which would be helpful to try when making resolutions:

Start small. Make one change at a time. Start cooking with non-dairy butter, for example. If you try to change too much at once, you’re setting yourself up for failure. You simply won’t be able to maintain it all.
Be specific. If you make a general resolution, you’re not going to be able to achieve it or stay motivated. Saying, “I want to lose weight” is not feasible. How much weight, by when, and how are you going to do it? Set specific, measurable goals for yourself.
Make changes gradually. And know they will take time.
Allow room for setbacks. They’re bound to happen. Over the holidays I ate too much junk and I certainly felt it. And just yesterday I felt worse during and after a workout than I did before, and got really frustrated until I reminded myself every day will be different.
Avoid the scale for the most part. Go by how you feel, not a number.
Get support when needed. My husband is the one who puts everything in perspective for me often.
Reward yourself. Are you seeing progress? Get a new outfit you feel confident in. This can help keep you motivated to reach your next goal.
One moment doesn’t erase all of your progress. I know I won’t always find healthy food options while out. It is what it is and you can’t beat yourself up for it.
Do what you can, when you can. I know I won’t find time to work out every day. But I can certainly build movement into each day. Squats while cooking or holding the baby. Leg lifts while waiting for the dog outside. Ab work while the baby plays on his mat. ANYTHING! It adds up. Trust me.

All this being said, I’d love to hear your thoughts on resolutions. Do you make them? Do you despise them? Do you take my approach to setting goals throughout the year instead?

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.

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.