Legs.
Elliott begins school in 2 days. She will be attending The Rise School of Houston - frankly the place I deem to be the most magical place on earth. Sorry Disney. (You can read all about The Rise School's inspiring history here.) She will be the first and only child to attend with a trach. We intentionally did not send her last year because of the trach, choosing rather to keep her healthy and growing at home. A year later {still with trach} and we recognize all the benefits going to school will bring, we also recognize the risk. To be cared for by the hands of strangers - strangers who are well equipped to educate Elliott, but not so versed in otolaryngology.
Knowing the best thing for Elliott is to send her to Rise, and knowing that the staff was committed to doing all that they needed to do to safely care for her... we decided to live by our hopes and not our fears. A trach team from Texas Children's Hospital trained the staff that would care for Elliott at Rise. We had sessions with suctioning practice, hygiene practice, emergency game plan practice, anything and everything to make the trach less intimidating and more just a part of the routine.
All this having been completed and I will still absolutely be spending approximately the entire first week in her classroom. The second week I will move into the hallway, third week brings me to the parking lot and 4th week I will be across the street - with or without binoculars. Who's to say? I have warned the staff that I will be a mom they dread but only for the first month... month-ish. Once I know Ellie is safe and they are confident and capable, I will morph into the cool mom. The mom that brings fancy baked goods, Starbucks, and gift cards. After all, I will need to win them back after that month and I will need to do it quickly!!
This is our first rodeo with school. It's our first rodeo with steady, all day socialization with more than 2 other kids. At our intake meeting I was completely overcome with excitement. Getting the list of required supplies, learning of their very structured and very educational daily schedule, hearing about Conscious Discipline, the SeeSaw app and the family board. Meeting all the therapists and staff that will love my child for 6.5 hours each day when I'm not there. I didn't hold Elliott once the whole intake meeting - about 3 hours. We met with ~20 people who all took turns cuddling her while we discussed her current and future abilities.
I have two close girlfriends who also have one baby each. The first baby is a girl, H, who is almost 2 months younger than Elliott and the second baby is a boy, J, who is a year younger. The mama's of these babies are a big part of my life and I love them fiercely. We have been friends for so long and intend to continue that friendship therefore, our children are stuck being friends. Sorry not sorry, kids.
H and J do not have Down syndrome. Nor do they have any of the other medical accessories that Ellie sports. It is an arduous path to walk watching my child play alongside two kiddos (younger than her) who regularly pass her by milestone after milestone. She endures 6 therapies per week and works so hard to achieve, whereas H & J come by the next skill naturally.
It's tough to watch your child struggle. Even tougher when they are playing next to friends who don't have to struggle. Makes the mind wander. After we spend a weekend together, I often need some time to reset my mental state. As mentioned in several posts, I have to keep my mind right to make sure I'm giving Elliott everything she needs and deserves. After a weekend with H & J, I experience feelings of thankfulness for having such wonderful friends to do life with and feelings of despair knowing that it will always be this way. Elliott won't catch up, in fact, she will only fall more behind as E, J and H all grow. Armed with this fact, I'm not sure how to make my path any easier to walk.
As school approaches I am flooded with worries of comparison. It's an act that only damages, yet most people can't seem to quit. Myself very much included. I learned just last week that every student in Elliott's class is already walking. Every.single.classmate. An "anomaly" the teacher assured as my jaw fell to the floor in response. And this just covers the physical element - I haven't (and won't) even touch on eating, communication, etc. My God, I need to wear a shock collar for comparison! One that zaps me the moment I start to head towards thoughts of 'why is that child, who is Elliott's age, doing..." *ZAP*. Not only do I compare when it comes to my child, I compare when it comes to myself and my life. There is always a moment when we all think so-and-so has a better marriage | house | life | job | body | fill in the blank. It's a terrible habit I hope to fully break free from one day. Until then, here is a vulnerable example for you all. Please enjoy while I go crawl in a corner to hide.
I hate my legs - always have. From my kankles to my upper thighs - what is happening in the lower hemisphere of my body??? No idea. And yeah, that's right - kankles. I am constantly checking out other people's legs. It's.so.weird. I would give my right arm for tapered ankles morphing upwards into chiseled calves and quads that greet each other at a shapely knee. Legs that appear to have been created for exclusive adornment in Daisy Dukes and mini skirts.
The truth is, at my absolute peak physical shape, my legs are nothing like the aforementioned. Not even close. It's just how it is. My gawking at other's legs (again - so weird) don't change my legs or aid me in anyway. My incessant pants wearing also doesn't help except perhaps assisting in continued paleness and a potential Vitamin D deficiency. As shameful as this is to admit, I only began wearing dresses and shorts regularly within the past 6 months. For one, it's hot as hell in Houston in the summer (read: all year) and for two, it's just stupid to have spent 30+ years of life comparing my legs to everyone else and subsequently hiding them. My legs are big, get over it. (*she says to herself*)
My legs are big...
My legs are also very strong. They carried my giant water and baby filled belly around. They can squat so well it would stun most dudes. They take me up and down stairs and they allow me to quickly get on or off the floor when playing with my daughter.
I should love my legs, kankles and all, as I am fortunate to have two healthy legs.
If it took me 30+ years to reach this leg revelation, how long will it take me to do the same for Elliott? To not compare her to H, J, or any friends with or without Ds. Well I certainly can't wait another 30+ years now can I?
I am preparing myself for the fact that Elliott will be behind in most areas where her classmates and friends may excel. She spent the first 3.5 months of her life in a NICU bed. She was born with Trisomy 21, a cleft lip & palate, and has a trach. This is the Bermuda Triangle of verbal communication. (Thank God for sign language!) She has been under general anesthesia more times than a baby her age should be, and she will be under general anesthesia more times than anyone should be in a lifetime.
So, lets focus on my facts for a moment and see if I can gain some perspective:
- My legs are big.
- My legs are strong.
- I am fortunate to have two strong, functioning legs.
- My daughter is going to struggle her whole life.
- My daughter is strong.
- I am fortunate to have a strong daughter who will likely handle the inevitable struggles better than her mother - she has so far.
I never want Elliott to get caught up in the comparison game that can, at times, devour me. I never want her to feel that her legs aren't great... or really, that any part of her isn't great. That she isn't great; amazing, actually.
I'm not sure that I can ever fully stop comparing; though I will give it my best effort for my daughter. There may be weekends spent with good friends that end in my feelings of despair, or schoolmates that trigger my comparison instinct but I'd much rather focus on the other side of these thoughts. What is Elliott going to teach H and J? What will Elliott teach the family and friends who surround her as she grows? What will she teach anyone and everyone she encounters who has not yet been touched by Down syndrome or difference? There is no doubt she will learn so much from H, J, friend's future kids, cousins, and her classmates - striving towards the accomplishments that they are making. I am excited for these moments. They will be beautiful and monumental memories we will likely all cherish. I envision Elliott's lessons will be more like planting a seed. She will inspire those around her to be more patient, more kind, and more accepting. Throughout the seasons, with more and more interactions, it will be like watering that seed and giving it sunlight. Allowing those character traits to grow and eventually flourish in her friends that do not have Down syndrome. Elliott will be the gardener in their lives. She is already the gardener in mine.
Until the NexT21,
Aubrey
PS - I wrote this post in shorts.
