West Trip - Day 1

Location start/finish: Atlanta - fly to Las Vegas
Activities: fly, Seven Magic Mountains, Red Rocks, Delano Hotel

Once we landed and got our rental car (a bigger SUV than we own - The big kids were very spoiled and are now pressuring me to opt for a bigger vehicle when my current one dies.), we drove straight to In-N-Out Burger. The kids had never been and it was lunchtime.

Immediate love - they couldn't enjoy their food fast enough.

From there we drove to Seven Magic Mountains.

Unfortunately the rocks were being cleaned and refinished (and maybe repainted after that?), so there was a work area around the rocks/mountains blocked off. It was still an amazing sight though, and the surrounding scenery was a breathtaking change from what we typically see.

From there, we drove to Red Rocks to get some hikes under our belt.

The park was expansive, so as we drove through we only chose two or three spots to get out and hike.

The big kids tackled many large rocks and had a blast climbing to the tops of them.

Ruby's favorite activity was finding rocks and sand to make 'spaghetti' out of...she maintained this the entire trip.

We ended the day visiting the famous Las Vegas sign before a quick dinner.

so much llama drama

this girl. she can go from being 100% to less than 10% in the drop of a hat. she can spike a 102 fever, and then (after you've hemmed and hawed about it forever), she'll start to drop on her own before you've even poured the tylenol. she will be so puny she can't even stand on her own two feet, then rise to run and jump and dance with no apparent reason for the rally.

this makes it hard - so hard - to know what to brush off and what to bring to a doctor's attention. with eli and maddux, i was less than alarmed when they had the occasional fever or cough...almost every illness before ruby came along was treated with some extra steam in the shower and a nap. but ruby has had more medical challenges than we've known what to do with. the biggest (leukemia, of course) is the one that has made me run to the doctor way more often than i would like. mainly because i just don't know from one illness to the next which ones are 'real'. sometimes she seems so sick and we go in only to be told it's just a virus that needs rest and hydration. then she'll be seemingly fine and spike a random fever at school only for us to find out that she's got strep or bronchitis.

the last few weeks have found ruby a little congested, but all of us have been feeling the effects of allergies and/or poor air quality. so no reason for alarm. until this morning when she wouldn't rouse from her bed. she was awake, but lethargic at best. but even after a breathing treatment and a popsicle (tried to get her to eat ANYthing), she hadn't improved.

so ruby and i were off to the pediatrician when they opened. we were there for four hours. they didn't like her oxygen levels, so gave her another breathing treatment, which actually tanked her oxygen levels, so they wheeled the big O2 tank in. she had another treatment (or maybe saline and a treatment?) with the O2 - she slept through that because her pulse-ox was so low. then some prednisone and more saline (all the while with O2 on her because as soon as they took it off her levels tanked again).

finally, they resigned to sending us to the ER because ruby's levels could not stabilize without being hooked up to oxygen. so much so that they called for medical transport because they didn't even want her off of O2 for the 30 minute drive it would take for me to get her there myself. (all during this four hours, ruby saw every nurse and tech in the pediatrician's office, because they have all seen her so much in the last six years, and they all wanted to check on her. love them.) sidenote: ruby will tell you she rode in the ambulance 'by self'. they gave me the choice of following in my car or riding with them, but if i rode with them i'd have to be up front (not with ruby). so i opted to drive my car because i wasn't sure how we would get home from the hospital at the end without it anyway!

once at Children's, they hooked her up to oxygen and another breathing treatment and ordered a chest x-ray. the doctor was cautiously optimistic that we'd not have to stay the night, but it all hinged on those films. we stayed on breathing treatments and oxygen for what felt like forever and tried to pass the time with tv and books. once they took us for the x-ray, they decided to test ruby's oxygen levels without being hooked up. she said as long as we could keep it above 94, she'd be happy. so they left and ruby and i played the game that if she could cough for me or do deep breaths, i would give her a few goldfish. it was amazing how well she would do with that, and she kept her numbers closer to 98 the whole time. this went on for another long time, ending with the doctor returning to inform us we could go home with another (new) inhaler and some antibiotics to help clear up whatever was trying to brew in her lungs.

back to the whole 'i just can't tell' storyline. after dinner, ruby was dancing with her sister, packing a bag for a sleepover (she does this every day) and acting every bit her regular self. all less than 8 hours after she was hooked up to oxygen and sent off in an ambulance.

she keeps me on my toes, this one!

the best

i have probably blogged about it more than a dozen times, but every day you give me another reason to. maddux, you were born to be a sister, especially a big sister.

the way you dote on ruby, the way you play with her, the way you involve her in everything you do. she is so lucky to have you. the connection you two have is #siblinggoals.

i am so lucky to watch the two of you together. i hope i never stop noticing how amazing your relationship is.

little mama

you are so fun to watch.

every day you come home from school or therapy or wherever we've driven your siblings, and you ask to go upstairs. minutes later you come downstairs with a bag or a box full of toys or clothes. usually you tell me, "sleepover. grandma jim. you stay here." sometimes you tell me you're cooking. usually spaghetti.

today you started a new activity: ironing. you pulled out an old pretend iron and went right to work on gathering a few towels and rags from the kitchen. and because you often accompany your dad to the laundry room where he irons every morning, you knew how to lay out your work in front of you and iron all of the way to the corners.

don't ever change.

shine like a star

this is why we research. this is why we prepare for IEP meetings for weeks. this is why we document all work and analyze all assessments. this is why we overthink every scenario trying to figure out 'the best setting'.

we want inclusion, but what if it isn't the best for our child? what if it doesn't work the way we hear about it working with others? here's the truth that i know so far, at this very very VERY early stage in Ruby's life: the work, the bad days, the struggles, the fight...they aren't the whole story. sometimes there is a shining light in the black hole that feels like our efforts to remind you that some good is coming out of it all.

today we saw that shining light: ruby had her first elementary school performance, lasting almost an hour, and she. rocked. it. as in she sang the songs, stayed in her place(s), did the motions, stood still appropriately, all with no teacher or para helping her through, no assistance needed. couldn't have been more proud... lehr got a bunch of video that i condensed down to about 6 minutes. i will watch and rewatch this on the hard days.

(this video is looong, but it's as condensed as i could bear. my personal 'ruby highlights' are at 0:23, 2:37, 3:35, 5:08, 5:28, 6:05)

self fulfilling prophecy

sometimes i wonder how much of your tendencies, your behavior, is because you're Ruby, how much is because of Down syndrome, and how much is because of how i parent you.

if i'm being honest, i baby you in some ways. i still pick you up (though i swear most of the time that is because i know your stubborn streak will not permit you to move when i NEED you to move), i still snuggle with you until you fall asleep, and i still call you my baby girl. i'm sure an outsider could find a dozen more ways too...

so why, then, am i surprised that you still suck your thumb when you get tired (which is a lot)? it's a habit your brother dropped before he started school, and your sister minimized almost completely by now too. yet you hold onto it, despite all of my best efforts to break you of it.

play that funky music, white boy

since you joined a band, last fall, you and the six other gentlemen that make up '99 Corolla have had this event on the calendar. for you, it was the first 'gig' you have had as a musician that wasn't tied to the church. many hours put into friday night rehearsals and saturday rehearsals and recording sessions and self practice has gone into this band (and this performance). and you wouldn't have it any other way. nor would we....even though it's a far drive, i absolutely love when you have the opportunity to hang out with these guys and work on your craft. in this band you play guitar and sometimes drums. they haven't been able to talk you into vocals yet...we'll work on it. you are the youngest, the rest of the band being made up of all high schoolers, including a senior. you guys have a few covers in your tool belt, but original music seems to be what you guys all want to focus on.

this weekend you all performed at the Taste of West Cobb, which was moved indoors at the last minute because of inclement weather. while i was worried that would affect your sound, it did not. you all sounded as solid as you always do in rehearsal. you performed five songs: three covers and two originals. one of your originals was the best, in my opinion.

oh the places this experience will take you! how grateful i am for you to have this time with like-minded musicians, some leading the way for you in your faith and your craft, all walking through this journey simultaneously.

dance the night away

you had your first middle school dance this weekend. you anticipated it for a month, planning trips to get a new dress and your nails done. you let your best friend and i sway you to pick a dress that was awesome, even though it wasn't your first choice, and i couldn't have been happier as i heard your friend ask you again and again afterwards if you really liked it, because her main concern was that YOU were happy with the choice. you tried on both dresses again at home, affirming your choice and moving forward with shoe selections.

proud mama moment when you asked if you could get a new pair of Vans for the event, ones that matched, but that you could wear afterwards. you speak my language, Maddux, and you are WAY cooler than i was at your age.

even though you complained about my immanent presence at the dance as a photographer for weeks beforehand, you were excited to ask me to join you and the other sixth grade girls beforehand for photos. your group of girls is so perfect right now - i hope you all remember how nice drama-free friendships can be!
at the dance you made the rounds, danced more than you didn't, and made eye contact and came into my personal space more times than i can count. and my heart melted every time. thank you for sharing this awesome first with me, Maddux.

growing pains

oh adolescence. honestly, we had way more struggles with you in your younger years than we have had during these tween and early teen years, but that doesn't make this 'middle' stage easy. not for you and not for us. it's hard to balance new responsibilities and emerging independence and social changes and academic intensification and sports and music and and and... all the while, your parents just want to pour into you so many things because we see the time slipping away already, and that often feels like 'lecturing' to you. 

you've impressed us with your ability to balance school and everything else. seriously. you aren't perfect, but you're doing a really good job on that front without any hand-holding from us. (that doesn't mean we don't bug you with questions when we see an errant grade come through your test scores, but that's after the fact, and you really do balance it all out so that you still end up with exemplary overall grades.)

you show much maturity in the area of your music, always working to make it a priority in your schedule. even though you play so much at church and with your band, requiring one of us to drive you to and from practices and rehearsals many times a week to locations not near our house, you're usually pretty good about asking (rather than assuming we can work it into our schedule), and it's rare that you don't verbalize your appreciation for that aspect of it.

technology is not our favorite. not by a long shot. after three years, i think we are finally making peace with you having a (very locked down) school laptop at your disposal during the school year, but the addition of a (very locked down) phone in the last few months has been a return to uncharted territory for us. we are working through it, often with glimpses of good choices and emerging digital maturity from you, but definitely with additional heated discussions.

i love love love the moments (sometimes even days on end!) when we know and act like we are on the same team, sharing ideas and highs and lows...communicating calmly and with humility. it's a really cool thing, when your kid starts to really grow up and you can do more connecting than correcting.

then something interrupts that and i am reminded that we in fact are not above the typical teen and parent relationship. instead of working together, suddenly we are opposing forces again that cannot understand how the other could be working towards a goal so opposite of our own.

the butting of heads, when it happens... i'm still not a fan. so many times in the last three years i have seen areas of maturity in you that leave me in awe. maybe that's what makes it so unbearable for me when we don't see eye to eye. there is so much of me in you, and that's probably another big part of the problem. i've still got lots of room to grow and mature myself, but when your words and behavior remind me of my errant ways of the past, it's a bitter pill. 

the good news is, we don't have to have it figured out today, or even tomorrow. but while we figure it out, let's wear the same color jersey, ok? i really like being on your team.

Just Another ER Visit

It should be more jarring for me to hear the pediatrician to leave her office and head straight to the ER. It's weird that those words don't alarm me too much, isn't it? Obviously Ruby is on mission to keep us familiar enough with medical 'stuff' that it doesn't phase us.

Last week found Ruby under the weather. Aside from two quick fevers at the beginning, she was presenting the same thing the rest of Atlanta was experiencing: pollen-induced yuck in the way of coughing, runny nose/sneezing, and red-eyed run-down-ness. I took her to the pediatrician on Monday, and she didn't test positive for anything, so we figured *just* a virus.

So our spring break was spent mostly hanging at home, trying to recoup and not overexpose. Through the week Ruby seemed to get better, coughing only a little at night and perking up in general. Then, over this last weekend, she was up with coughing fits through the night, even though she acted fine during the day. Monday morning came, and we did a breathing treatment (as we had been doing throughout the last week, to help with the coughing) in preparation to return to school, but Ruby just couldn't seem to rally.

So I packed Ruby up in the car and headed back to the doctor instead. Once we were called back, the nurse immediately pulled out the pulse-ox meter because of how lethargic Ruby was acting. It was low, even though she'd just done a breathing treatment. They decided to give her another type of treatment, to see if that helped. Once the mask hit her face, she perked up a little, but even after 15-20 minutes of it, her numbers hadn't budged. The doctor checked her out probably three different times through all of this, listening to her chest, her cough, her breathing so many times. In the end, she couldn't get any consistent sounds from her, so she told us to head to the hospital - she would call them so they'd be ready for us.

And they were; when we checked in, Ruby was called right back and they had oxygen ready for her. We stayed in the ER exam room for a little bit and then went back for a chest X-ray, which confirmed pneumonia. From there, they started IV antibiotics and an hour long breathing treatment, to see how much that affected the numbers. They didn't move, so Ruby was admitted to the hospital. The oxygen had to stay under her nose throughout the day and night, which was quite the challenge...she did NOT like that. Also, putting the IV in her hand was harder than I thought it would be. The first nurse that tried did not have good luck on either hand and Ruby cried in pain the whole time. (I didn't like that at all!) Another nurse got the line in quickly, but my girl was wide-eyed with fear by that point.

It was 6PM by the time we got to Ruby's room, so I ordered her some dinner right away. She ate it very quickly and then snuggled in with me and dozed off...it had been a long day. Of course, she still had to do breathing treatments and antibiotics every four hours, so around 8AM, she was woken up by me holding a breathing treatment mask over her face (she still had her oxygen nose thing too)....yet another traumatic experience for my girl. Thankfully it was short-only about a five minute treatment, and Daddy walked in to trade places with me very shortly after. (Daddy always makes things better.)

The next morning I returned around 9AM to find that they'd already taken more blood to test and compare against her initial draw. Also, her oxygen had been removed! A few hours later the team declared that her blood showed remarkable improvement, and assuming she held her passable pulse-ox levels for another few hours without receiving oxygen, she would be able to leave. The doctor that saw us in the ER commented on his surprise in delivering that news because based on how she presented the day before, he thought she would be there for at least three days.

As it always does, the discharge process took very long and it was dinnertime before we actually got home. But Ruby perked up at the sight of her home and her people, and was oh-so happy to sleep in her own bed. She has been way more cuddly and clingy to me than usual...this bout of illness has definitely shaken her a bit.

Unfortunately, she has still not returned to school. The doctor's released Ruby to return as soon as she felt up to it, which we assumed would be Wednesday, based on her afternoon and night Tuesday. However, she was very fatigued upon getting up, and actually went back to bed for a full hour after a quick bite to eat. So we are in a holding pattern - fatigue is real and it comes on quickly. In the meantime, we are doing breathing treatments and antibiotics and hoping for Ruby's stamina to return.

cuddles

i am not a cuddly person. i'm not the hugger in the group. but you are the opposite. you are so physically affectionate. especially these last two weeks while you've been so sick, you seek hugs and kisses and cuddles. and, in spite of myself, i love it.

i can't help but steal nuzzles in your soft neck. i pull you in tight as i dry your hair after your bath. i linger in your bed after we read bedtime stories so that i can soak in the closeness to you for just a few more minutes. you bring out the best in people, ruby. we are the lucky few because of you.

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.