Modifying For Mira
It started with a burp cloth.
July 18th, 2016. This was the day Mira was discharged from the NICU at The Childrens Hospital of Philadelphia, just 4 days after her whirlwind entrance into the world. I remember going over paperwork with the incredible team of nurses that were Mira’s (and mine) around the clock saviors. After what felt like 100 signatures, one of the nurses gave Mira a last snuggle before passing her off to me with a very kind, but casual “Off you go Mira, have the best life.”
I thought to myself, “Wait, what? That’s it?” They are just going to let us take this baby out of here under the assumption that we actually know what we are doing? While this wasn’t the first baby we took home, this time, this baby, it felt light years apart.
The nurse could sense my panic, and as Evan placed Mira in her car seat she went to reach for something.
A burp cloth.
I thought it might be for my tears, or any accidents that might happen during the 65 mile trip home, but then the nurse did something I wasn’t expecting. She rolled it up into a tight cylinder, folded it over and stuck it behind Mira’s neck.
“One thing at a time. One year at a time. You got this.”
For the next several months, Evan and I used the burp cloth trick every time we set Mira down. The reason for this was to prop her neck up, giving her larger than average head extra support and keeping her chin elevated for proper air flow. No Amazon reviews. No 5 Star Rating. Just the knowledge and instinct of a CHOP NICU nurse and a hospital grade piece of fabric.
It was this simple burp cloth which made me realize my brain would eventually require re-wiring in order to anticipate Mira’s needs and adaptions whatever they might be.
Over the past 3 ½ years, Evan and I have done everything we can to ensure that Mira is comfortable, safe, and as of late, independent inside of our home, her school and any other environment which could pose a challenge for her.
Mira’s first year was all about safety and innovation. Thankfully, I am married to a problem solver. Evan is resourceful, handy and can learn to do just about anything through research, YouTube and a trip to Home Depot. During Mira’s infancy, Evan crafted a pool float, a highchair with non-slip grip and my personal favorite, the laundry hose carseat air conditioning unit.
Mira’s second year was all about mobility. She was slowly but surely getting around, mainly by the use of her walker, “Uppy”. It was important for us that she have accessibility to as much space as possible. We moved furniture, added in easily accessible shelving for toys and books and bought stools. Lots and lots of stools.
Mira’s third year represents newfound independence. She is walking more steadily, exploring more adventurously and testing out her boundaries every single day. For us, this means bringing our own line of sight down, several feet and viewing the world at her level. This means installing a second stair hand rail, a faucet extender, and a custom stool for her to get in and out of her bed on her own (made extra special because it was built by her Daddy). It means taking the extra time to research what tricycle will work best for her, what chair will not let her legs dangle off the ground and what coffee table will she be able to see over. It means moving Mira’s snacks in the pantry to a place where she can access them (well, except for the Oreo’s, that would be trouble).
Most importantly, it means being patient with her. It has always taken Mira just a little longer to do things. I have learned that she will do things on “Mira Time” and it is SO important for us to take a step back and let her figure things out on her own. After a long day at work, walking into the chaos of dinner/homework/bath/bedtime all I want to do is scoop Mira up in my arms, as it means making the “process” run smoother, run faster. I want to carry her up the stairs so we can start our bedtime routine. But every night she says “I do myself” as she gingerly ascends the staircase one step at a time. It takes several minutes for her to get to the top, but I can see her strength and confidence grow with each day that passes.
Independence is our ultimate goal for Mira. Evan, Ellie and I are always thinking of ways we can help her achieve success and develop life skills on her own including home and school routines, expressing her feelings with others and advocating for herself.
A mantra I live by in raising a child with Dwarfism…”just today.” Yes, a lot of what we do with and for Mira incorporates our hopes for her future, but all that is ever required of us at one time is today. We don’t have to have it all figured out. We wake up every morning and try to be the very best parents we can be to both of our girls…today.
Mira drives our motivation. She faces more challenges than most kids I know and yet she shows up every day–gets on her bus, walks into her classroom, engages with friends, tries things again and again when she’s previously failed. Knowing that keeps me going when I’m burning out and want to quit, when I want to back down from something that scares me, when I’m feeling tired or unmotivated.
If my daughter can show up, so can I.
As parents, we want to do everything we can to make sure the world is within Mira’s reach, right where it deserves it to be.
I held onto that burp cloth. To me, it represents the beginning of a lifetime of creativity, parental instinct and thinking outside the box. We know these modifications will become more complex as Mira gets older, we know there will be things that we won’t be able to figure out on our own, but for now, for today, I know that nurse was right, we got this.