fruition

there are two big things i've very intentionally prayed for you for a few years now. one of those is for you to find a passion. a sport, a hobby, something that pulls at your heart...anything that makes you feel connected and challenged and competent. it has been hard, probably harder for you because i am constantly 'bugging' you about signing up for the school play or for a rec league of a sport. i have been relentless in my attempts to help you find something. and while you have shown me in your awesome desire to work with kids at church that you do indeed have a passion, and a great one at that, i still prayed that you would find something that would help you connect at school or with your peers.

after a few attempts to join sports that required a tryout, i was worried you might meet the same unsatisfying fate with soccer. even though you've played through the years, it's been with a passing commitment to a rec league that meets once a week. (in other words: no guarantee that you could make a competitive team.) but you were awarded a spot on the team, likely to attend practice but sit the bench during games, which is not uncommon for an 'underclassman'.

oh, but Maddux....last week you had four games and you played in three of them. not because the team was short on players (we usually have 6-8 on the bench), but because your coaches gave you a chance. first it was just for a few minutes, but one of the games found you in for almost half of the game. and how you brightened the field. your smile was so big, and it brought you so much joy...

you still have a long way to go to become the leading player in terms of skill level, but so what - you have the time. the connections you are making with your teammates, and the experience you are gaining with coaches that seem to make very smart choices with their players is exactly what I've been praying for. aatching you interact with the other 6th grade girls (and a few older ones), and seeing you encourage and build up those around you, all the while, learning how to push yourself in this sport has been so amazing to watch!

slow down

 you are so beautiful that sometimes i can't stand it. you are growing up fast, and i find myself amazed at how 'big' you are and how grown up your little face looks these days.

hoodies

hoodie zippers elude her little fingers. she loves them, but they are hard.

usually if I get them started, she's good to go.

 and if her clothing has pockets, her hands will seek them out, because who doesn't love pockets.

generous

your heart is more than generous, it is open and giving and receiving. especially for her. there is not a day that goes by where you don't allow yourself to get sucked into whatever ruby is doing or wants to be doing. you will pretend to be a dog, or help her create a meal in her kitchen, or dress up and play hide-and-seek. and it's not just the fun stuff...you will take her to the bathroom or help her take a bath or clean up a mess. your love really knows no limits when it comes to your sister. no matter what you are doing, you will almost always ditch it to hang out with her instead.

you rush home from your game to help her get ready for a dance, you take a leave from a 'big kid' project and entertain/take care of her on a whim, you ask for things for her because you know you loved them when you were her age (movies, painted nails, experiences). you never scroll through my photos without stopping to 'oooh' and 'ahhh' at the ones with ruby in them. if you take 10 pictures or videos, more than half will contain her. when the two of you are in the backseat together, you're most often right up next to her instead sitting with a seat buffer.

her adoration for you is evidenced in the way she lights up when you enter the room. she always wants maddux, she always asks when you'll be home. what you have given her in the way of unconditional love allows her to know that you are a safe place and she can come to you for anything from entertainment to a scraped knee. you are the epitome of #bigsistergoals.

"by self"

as time-consuming as those words are, they are music to my ears. because we didn't know if or when or how you would be able to communicate with us. because there are so many things that are still out of your ability to reach. because those words remind me of how determined you are. shoes are something you first succeeded at hundreds of days ago, yet they still stump you sometimes. today you found these shoes in your closet and set out to put them on and fasten the velcro, again and again, as if to keep proving to yourself that you could do it "by self".

rainy afternoon

everyday we pass the minutes, just you and i. when we don't have therapy or driving to do for your siblings, we cling to the house and yard so that we can breathe, and most of those inside minutes are spent here, in the kitchen. you love to help me, cutting vegetables or emptying the dishwasher or mixing the ingredients. always you pull in the chipped black chair. always you wear those red Elmo shoes.

futball

oh the hours. how many did you spend on the baseball field only to come home and throw or catch or hit until we made you stop. how much time and energy and love did you put into that game, both as a player and a fan. and while i loved baseball before you came along, i REALLY loved baseball when it involved you, even though the practices were long and many, and the games were long and many, and our lives were simply the moments between driving to and from the field.

when you switched to soccer a few years ago, it broke my heart. it seemed like you started to see something that you hadn't seen before. it seemed like you doubted your ability. it seemed like you noticed a gap between your skills and those of the other players. (mama bears don't like those kind of feelings, fyi.) so i mourned the absence of baseball, mostly because you had such a driving passion for it and i really really loved watching that in you, and i was afraid you might not have that for another sport.

but here we are, three years later, and you are still loving soccer. this last year has found you making the school team and playing on a more schedule-demanding club team. and while the kids are still bigger than you, as they often are in every area of your life, you have something real to add to the team. your many practices each week - often two each day to cover both teams - is showing up on the field in the way you work with your teammates in this dance that is not choreographed, but still so fluid. i think you know you're not the best player on the field, but you carry yourself as though you know that you have a lot to offer the team. you walk with confidence. and mama bears DO like those kinds of feelings.

little victories

much more of a marathon than a sprint. potty training has been taken to a whole new stratosphere with you. it is my most despised parental duty, probably because i don't think i can honestly do anything to will someone to notice a biological need. with your brother and sister, it wasn't fun, but it was quick. with you, we worked tirelessly for over a year, seriously worked, before it started to click. and even though now that you are trained, and now we are done, we know we are not really done. in the back of our minds there is still the knowledge that anything from a virus to an extra fun day in a new environment can throw you off and we will have an accident on our hands. months will pass and try to make us forget, but we don't. so today, when you excused yourself, and successfully did your business solo as you do all of the time now, i silently thanked God, reminded myself that many of your peers' parents don't have the most-of-the-time luxury that i am currently witnessing, and reveled in how far you've come.

Not Invited

For the last few weeks I've been trying to work more on my photography, which usually means looking at countless images, trying to take note of how they make me feel and what about them makes me want more. In the process I came across an a British photographer that has such a perfectly simple style...I poured through so many photos of hers and then I saw some of her youngest daughter. I thought, but wasn't sure, that she also had an extra chromosome. Of course I dug deeper and confirmed, and in the process found a collection of work she took of her daughter, Alice. Beautiful. Simple. Real. She titled one photo "Not Invited" and I can't stop thinking about it.

How many times in Ruby's life will she be 'not invited'? How many times has she already been 'not invited'?

How about when she was born?

I can't change it, but my initial reaction was definitely one of such disbelief because a baby with Down syndrome was not invited to be part of my story.

The emotions that come along with knowing my then feelings, and even (if I'm honest) my sometimes-when-I'm-scared-and-frustrated-and-overwhelmed-thank-god-it-passes-quickly now feelings are hard and confusing to say the least.

This concept of 'not invited' is hitting home very hard right now, mostly because of school. It's hard, y'all. I don't know the solution. I don't know if there is a perfect answer. But even assuming the best of intentions by everyone in every school situation that is to come, all of the extra work that goes into it makes me feel like Ruby is 'not invited'.

Back to her birth, Eli and Maddux immediately invited her into their hearts and lives. But as siblings often do, they squabble now. And I worry about her being 'not invited' during moments of their lives that might a little -too much- with her involved.

And probably mostly because of me and my fears of drawing negative attention to Ruby, but going out to do most things (like dinner out, a park visit, the grocery store, a doctor's office) often brings feelings of being 'not invited'. Because my girl is handsy. Because my girl is impulsive. Because my girl is curious. (All of those things could be because my girl is five.) It's sometimes feels like showing up to a china shop with an energetic dog - not invited.

On the nights when I lie for too many hours in bed, mind racing, often those thoughts are of Ruby and her future. Of course I worry think about middle and high school. Will she participate in school activities? Will she be accepted by some of her peers? Of course I worry think about college and her young adult life. Will she have independence? Will she have a job that gives her a feeling of purpose? When I allow myself to go to her mid-life, when Lehr and I are hopefully old and retired, I wonder more about her invitation status without us. That's a lot to think about when your child is barely in school...

This has nothing to do with the amazing friends around us. They go out of their way to make sure Ruby is invited. I think this feeling is more of 'not invited' in this world as a whole. The termination rate is sky-high for babies with Down syndrome, even in the United States. That's the ultimate sign of not being invited, isn't it? And yet here she is, possibly evoking feelings of 'I'd rather not' in those around her. So Ruby's very existence is one usually not sought after, let alone invited. (Are we in that dark place yet?)

Sorry guys, just a little melancholy about the invite list these days.