He Never Looked Back

In our state, Early Intervention services stop on a child’s 3^rd birthday. Callan turned 3 on 2/12. That meant the next step was for him to transition to preschool, where he could continue receiving speech therapy, physical therapy and occupational therapy. And any other therapies he may need over time.

Today was his first day. And he did AMAZINGLY WELL. He let his teacher carry him in, he ate his snack, joined circle time, played instruments and used his signs to communicate countless things. No separation anxiety, no uneasiness. He was a complete champ.

If the pandemic wasn’t a factor, Callan would be in an integrated classroom with kids of all abilities. But for now, there are only 2 other children in his class, both who need services. We’ve had months of preparation for this transition – calls with therapists old and new, working with our coordinator to get the details down, helping to create a very comprehensive IEP for him, advocating for him as his parents as to what we see to be his strengths and areas to work on, and many emails with his new teacher updating his sign list, records and more. We even requested two brief meetings before he started so that he could become familiar with her. Otherwise, we’d be expected to have him walk into a new building with a complete stranger, since we’re not allowed in the building under current guidelines.

Let’s rewind a bit. Callan has had in-home therapy from the state since he was 6 weeks old. But with the pandemic, it’s meant virtual therapy for a full year. He hasn’t met any new people and has had limited social interaction. He’s mostly been with his Mom and Dad 24/7, as well as some quality time with his grandparents each week. And we also added his baby brother Stowe to the family last summer! Callan has had a lot to contend with and has thrived. What he’s achieved in the last year alone could take up countless blog posts. But by the time school was about to start, we knew he needed a change: more frequent services, more social interaction and the extra push from someone other than us each day to help him reach his goals.

Both times we took Callan to meet his teacher, he didn’t want to leave. He cried the entire drive home. That reaffirmed to us that he was ready for this new adventure. And that made my Mama heart a little less anxious, because starting school is a huge step, let alone at 3 years old during a pandemic and after a year of being mostly quarantined.

When we were told Callan’s prenatal diagnosis, we knew he’d have obstacles in life. Maybe more than others. We didn’t know what they would look like because every child is different. But regardless of the challenges he faces, our goal has always been to raise him to be resilient and as independent as possible. Today, his teacher met him on the sidewalk with his favorite ball. Before long, he was playing and she offered to bring him in. She scooped him up and off they went into the school. HE NEVER LOOKED BACK. I still can’t believe it, but deep down, I think I knew that would be the case. That independence we’ve fostered his entire life? I didn’t expect to see it show up at such a young age, in such a hit-home kind of way. I’m a bit taken aback, but so incredibly proud.

I could fill this post with cliché after cliché about how a Mama feels when her “baby” grows so fast and takes these monumental steps in life. And they’d all be true. But for me, those emotions are heightened and feelings of pride extra special because of how hard I know Callan works every single day. Since the day he was born, Callan has been inherently a fighter and the most determined person I know.

Yes, we’ve done a lot of work over the years to get Callan to this point. But the truth is, we’ve simply shown him what he was capable of. At times he needed an extra push or more encouragement. Or to be told he could do hard things. And for all of those – we were happy to oblige. But this triumph is his and his alone. It has to be. He needed to do the big work today. He needed to be ready. And he was. ❤

Dear Mom Letter

IMG_8836[189] Photo: Copyright House of Kosi

Disclaimer: This is our journey. The medical community instilled a great deal of trauma and fear in us about Down Syndrome, which I think impacted how we handled our particular situation. Your journey and community may be entirely different and I hope that’s the case. But regardless, most parents with this diagnosis I’ve talked with share similarities in how they processed the news. And I’ve learned that sharing your personal story can help others, especially the most raw and difficult parts.

Dear Mom,

If you’ve just received a Trisomy 21 diagnosis and feel the need to grieve – allow yourself to. You need to and have a right to. Don’t let anyone tell you differently. Let yourself feel all the emotions, even the ones you’re scared of. There will be many.

The unexpected and the unknown can be debilitating. Rely heavily on your support system. Be honest about your feelings with those closest to you. And tell them what you need. Even if you don’t know what that is, let them sit with you while you cry. In my case, I had one friend who left her kids at home and drove an hour to my house to make me breakfast from scratch. Others let me cry over dinner. My family took walks with me, got me out of the house and kept me busy when I needed it most. And we ordered takeout when I didn’t want to be that person crying in public yet again. Are you noticing a theme? I cried A LOT. But my support system lifted me up when the heaviness of our situation threatened to keep me on my knees. Because honestly, at times facing a diagnosis with unknowns can and will feel bigger than the strength you think you have to lift yourself back up.

Nothing will prepare you for the stress of this time. You’ll be sad. But you’ll realize soon enough that it’s not quite sadness at play – it’s the enormity of the situation, the sheer unknown, debilitating fear and worry about your child’s health, and the unimaginable anxiety about what is to come.

Share the emotional load with your husband or partner. They’re feeling it all too and may be processing it the same way – maybe differently. Have the tough conversations. Sit in silence if you need to. And wipe each other’s tears. Check in with each other daily and often. We grieved for a while until I caught myself for the 3^rd time saying, “I don’t want to be sad about our boy.” It was in that moment we both realized we didn’t have to be. It was our choice to make. And he deserved for us to be positive, to choose bravery, to choose happiness.

You may not want to hear it (I didn’t) – but it WILL be okay. Hearing that felt like a knife in my windpipe during that time, because I honestly didn’t know if it would be. And everyone who said that to me, had never been in my shoes and couldn’t possibly understand how I felt. It was too soon and I didn’t have the capacity yet to think that way. But looking back? I now know that it was true. Your baby will be perfect and what you never knew you needed. You’ll even have a greater appreciation for everything because of all you’ve overcome to get to where you are.

I’ve said it before, but if back then I could’ve had just a momentary glimpse into our present day life, it would have eased so many emotions and prevented a great deal of trauma. But it would have also changed my journey. I know now that I needed to work through every single emotion. It was part of the process and the beginning of my personal motherhood story.

Over time, you may also feel some guilt. Guilt that you were ever sad or fearful. Guilt that that somehow makes you a bad person or mother. Guilt that you should never have felt a certain way about the diagnosis or your child or the situation. STOP THE GUILT. The truth is that as hard as your experience may be now, it’ll help shape you into a more incredible mom. So be proud. Of you, of your baby, of your journey. Every part of it.

Dear Mom – you’ve got this.

Read more about our diagnosis story here.

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.

4 minutes…a milestone reached

Photo: Copyright House of Kosi

I have so many topics I want to write about. So many posts planned.

But today I’m writing about something I didn’t think I’d be writing about at the moment. Milestones. Expectations. Goals reached. Pride. The baby is now sleeping and I felt compelled to document our day.

At 10 ½ months old, Callan sat unassisted today for more than 4 MINUTES. Up until today, he would sit for a few seconds max and fling himself backwards hoping someone would catch him. Not the safest approach! We’ve worked – he’s worked – incredibly hard on this skill for months now. It’s his least favorite because it takes a great deal of effort, he gets frustrated, it’s uncomfortable and for a kiddo with lower muscle tone in his core – it’s freaking hard, simple as that. One of our physical therapy goals was to have him sitting unassisted by his 1^st birthday, which is less than 6 weeks away (that knocks the wind out of me to even write). Of course I believe he can accomplish anything, but the irony is that just last night I said to my husband that I didn’t think we’d reach that goal. Why? Because while I knew he could sit for longer than a few seconds, he didn’t WANT to.

If you take anything away from my writing, let it be the one thing I’ve learned as a parent of a child who needs extra help in some areas: They’re not going to learn if you keep them comfortable. Kids like comfort. Can you blame them? But discomfort leads to accomplishments. I suppose that’s true for life, isn’t it? So every day we’ve worked with Callan, using techniques we learned in therapy but also other tricks we’ve learned along the way. And sometimes, tears were involved. If he didn’t catch himself and got startled. If he was just over the exercise. We’ve also worked on comforting or rescuing him (when working on skills) only when he’s truly upset or scared, not when something is hard. And if he’s upset because something is hard, we give plenty of reassurance. He’s come SO far with this skill. He recovers quickly now and it’s become apparent to those closest to him as well. As his mom, it’s the absolute worst to see him upset, but I also trust that he’s learning the skills he needs to cope in these situations.

When I realized he was sitting for more than 30 seconds today, I took this photo. Then I started recording. More than 1 minute later, I abandoned the video to take it all in. More than 4 minutes later, the shock turned to tears for me. Watching your baby learn and grow yields such complex emotions for any parent. But watching your baby accomplish something that’s taken such concerted extra effort day after day after day after day? And to suddenly do it like it was no big deal? My pride is indescribable. He wobbled a bit then didn’t even fall – he lightly moved to the side then rolled to his belly smoothly – another accomplishment. I scooped him up as tears poured down my face. And I told him what I tell him every day. “I’m so proud of you. I’m so proud to be your Mama. You are brave, you are strong, you are smart – you can accomplish anything.” I just am in awe of him. Of what he can do, how he overcomes obstacles, his ambition and fighting spirit that are already palpable.

The physical and cognitive abilities of babies with T21 are not predictable. Like every other person in the world, every child with T21 is different. At our genetics appointment recently, the counselor said something that stuck with me. He said, “Einstein has the same number of chromosomes that I do. But I can guarantee you we do not have the same intellect or physical abilities.” And he’s right. Callan may have an extra chromosome, but he also has his own unique set of abilities. While we push him to attain what are deemed appropriate milestones within a certain age range, we place no strict expectations on him based on other children and where he “should” be in comparison. We push him to reach HIS potential. Plus, he’s quickly taught us that he’s going to reach milestones at his own pace anyway, when he’s good and ready.

I think milestones in general are a tough concept. I have a difficult time believing every child should reach certain milestones in the same timeframe. How is that even feasible with how unique each child is? That being said, I admit it has been hard at times to see babies Callan’s age who are already sitting up, crawling, pulling up, etc. I never ever play the comparison game, but just last week I had a moment of feeling like we weren’t making progress. I swear Callan is in my head and hears my thoughts because as soon as I start to let the worry creep in, he pulls out all the stops and shows off a new, epic skill. He’s like, “Oh yeah, Mama? Watch this.”

I should note that today is a Friday. I recently made the transition to a shorter work week with Fridays off so that I could get more time with Callan. Days like today prove yet again why that was the best decision we could have made. These are the moments that we work toward, and why it’s so important we get extra time. These are the moments that I want and need to be with him for. These are the moments I live for.

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.

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.

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.