He Never Looked Back

Photo: Copyright House of Kosi

In our state, Early Intervention services stop on a child’s 3rd 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 3rd 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.