Where We Are

“You’ve been quiet lately.” A co-worker says while passing me in the office hallway. I give her a side eye because that isn’t a comment that is generally hurled my way.

“Your blog? You haven’t been writing.”

The truth is, the past few months have been kind of a whirlwind for me.  It started as an over-scheduled, spread-too-thin Fall that led to a Winter plagued with what could only be described as wave after wave of misfortune.  We then ended and began the new year, with the double death of our last living grandparents.

I was so exhausted, both physically and emotionally and so full of ideas, but I couldn't write. I was stuck on need-to-do's, probably-should-do's and way-over dues.  I’ve been meaning to write this for a while now, as I frequently receive questions about how Mira’s doing, what she’s up to, and where we are on this journey with Dwarfism.

So, here it is.

I’ve realized that two and a half years isn’t nearly long enough to truly understand everything there is to know about raising a child with Dwarfism, but it’s long enough to understand what I feel is most important–that there is so much this little girl has to offer the world and that we possess the unique privilege of helping her believe and achieve that.

Today, Mira is two-and-a-half years old. She is healthy, growing and eats pretty much whatever we give her. She can walk, talk and just like her big sister, that girl can dance. She is funny, iron-willed and wakes up every single day asking for her bathing suit. My summer baby is ready for her season.

Mira still receives speech and physical therapy once a week from a team that tells me that they are so grateful they get to kick off their work week with what they affectionately call “Mira Monday.” She is working on strengthening her core, improving her balance and learning to have confidence in her newfound independence!

We have just over two years before kindergarten, and right now we are planning on sending her to public school when that time comes. Mira has been at a local daycare (the same one Ellie attended) three days a week since she was 6 months old.  This is where I would normally insert my working-mom-guilt sentence, but the truth is, when it comes to her education and social development, you won’t get that from me. She is exactly where she belongs. Learning and socializing among her peers.  I am confident that this time will help make the transition to kindergarten a little easier. Her teachers and other staff who have known her since infancy are blown away by her progress, especially in the last few months.

Evan and I have noticed over the past two years, that there are great peaks in her development where there are so many new discoveries and new words, but that there are also plateaus where she needs time to reflect on what she’s learned and just be for a while.

We are experiencing a peak right now, celebrating a beautiful burst in her development. She’s walking and talking a lot more, and every week there’s a moment where we look at each other and say, “Did she seriously just do that?” Those moments? They belong to our whole family. They are special. They are marriage-bonding and family-appreciating.

This past year, I’ve spent a lot more time learning from parents of children with Dwarfism, and I’m learning a lot. I can’t even explain it, really, because I’m in the middle of it. My perceptions, my ideas–they’re being molded right now.

Our lives have changed a lot in the past three years, and we continue to move forward. Does it still hurt? Well, I recently spoke with a woman who had reached out to me for some advice. She was 7 months pregnant and had recently been given the same diagnosis that we did. I spoke with her for over an hour. I smiled through a lot of parts that I’ve moved on from, but that one moment, the one with my mom and Evan sitting at a round table in an exam room in Philadelphia, I got stuck. I was unable to speak, catching my breath, paralyzed by the weight of that memory until finally I asked the woman to give me a minute.

So, yeah, it’s still there. And I’m so thankful that it is. It’s part of who I am. It’s part of who our family is.

I’ve learned that having children and loving them so desperately turns you inside out. Having a child with any type of difference means that there’s going to be added and unexpected challenges. I carry that with me every day.

The best way I know how to deal with that is to enjoy Mira for the beautiful gift that she is and to make every effort to help her soar. And if I can make a dent in the world around me, around her, inviting others to accept people with differences and make efforts to help them soar–well that would be extraordinary.