First Babyshower as a Special Needs Mama

Last weekend I went to a lovely baby shower for an even more lovely mother-to-be. The food, decorations and games were Pinterest worthy and truly remarkable. The women were kind. And the new momma is a sweet family friend who I care about a lot and am so excited to celebrate in her new role. 20130115-105940.jpg

But, despite all that, this shower was incredibly difficult for me. It was the first baby shower I'd been to since having Sage and since her diagnosis. I didn't expect it to be so emotional for me, but it was.

There were two other baby girls at the shower. One in particular was quite the adorable firecracker. She was nine months old and she was siting up, army crawling, babbling and grabbing at everything. It was slightly heart wrenching for me to see this baby doing so much more than my sixteen month old can.

Her mom and I sat on the floor and she and Sage stared at each other. Her mom kept telling her, "Gentle. Be careful with the little baby." As she grabbed for Sage. And my heart broke a little. She didn't know that Sage was almost twice as old as her active little girl. How could she know? Sage was barely holding her head up.

Throughout the shower people kept asking, "How old's your baby?"

I hate that question.

I answer it, truthfully, "Sixteen months." "A year." "Almost a year and a half."

And I see the shadow of confusion pass over their faces for just a moment before they all reply, in turn, with some statement about how cute she is.

And I feel awkward and sad. Yes, she's 16 months. Yes, she still has trouble holding up her head. Yes, she can't even sit up on her own yet...let alone crawl. Yes, she's not talking yet. Yes, she's underweight... And yes, she's cute. But she's so much more than cute. Yes, there's a lot that she can't do, but there's also so much that she IS.

I want people to know and understand. I want them to know that she's different and special and what her condition is. I want them to know that it's not my fault that Sage is this way. I want them to know how motivated she is and how hard she works. I want them to know her little personality and how her sweet smile lights up a room. I want them to know that it's ok, that they don't need to pity us. But, how do you communicate all that to a stranger, especially when all they are asking is what they take as a simple small quick question. They aren't asking for our life story, they are just making small talk. And really why do I care? Why do I want them to know the story? What does it matter if they understand?

So, I leave it with simply answering their question, "Almost 17 months" and move on without saying more.


And then I look around the room. I see the mom-to-be laughing with her mom. I see my sister-in-law talking with her mom and friends on the other side of the room. I see another mother-daughter pair taking a picture together. And I realize, it is unlikely that I will ever throw a baby shower for my own daughter. And I choke back a tear.

I have looked forward to mothering a daughter for a long time, and now many of the things I looked forward to will, in all likelihood, not be my reality.

I know that there will be other experiences that I will have, I know that Sage will bring with her a unique set of experiences and opportunities and I look forward to them. But, I still feel sad over the experiences I am not likely to have. And yesterday's shower reminded me of that.

With all these feelings tugging at my heart it was hard to be social - not to mention that being social is not exactly a strong suit for me anyway. And so, the shower passed and when it was over all I could find the strength for was holding my baby tight and crying softly.

Rejoicing in the journey, Bethany