The Daily Sugarplum

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Oh we love our daily dose of Sugarplum. She is days shy of 17 months old now. 17 months sounds so short and yet feels like she has always been. Our mad monstrous crush on her has yet to fade. The quiet, solemn, shy-smile of a heart has maintained its position in how she interacts but it is now only one piece of who she is with us.

She still sleeps in our room. I can’t quite bring myself to move her into the waiting crib in the girls’ room. Partially for selfish reasons- the need to keep our last baby close and partially for her own sake- of letting her continue to linger in dreamland come the rise of the morning sun when her energizer bunny of a sisterhood wakes and crashes into the day taking no prisoners.

She alternates when she goes to bed at night. I know you aren’t supposed to do that. And generally I’m all for having a consistent schedule so she knows what to expect. But, I’d like her to be included in story time and she often can’t quite keep her tired self content long enough to make it through Curious George’s latest antics.  We gather on the girls’ bed after each has picked a nighttime story and she wanders on and off enjoying the free reign of the floor while her sisters are captivated in the story. We try to have her sit with us reminding us all of our “story-time manners” but she has other ideas and will usually pounce on her sisters until we set her back on the rug to play. The nighttime cat crazies have curbed though. Her energy is waning by 8 and she’s ready to blow her moi-smacking  kisses to her sisters and be carried off to nurse and “Good Night Moon” the items in our room.

She knows what to expect and looks from the mirror to the family picture to the TV to the books to the lamp to her bunny lovey and settles easily into the pack-n-play after a nursing. What I really would love would be for her sleep all night. Lucky for her I’m too tired these days to enforce it. She will typically wake one time at night. She doesn’t cry. She starts by chanting Momma. Usually as I lean over to pick her up she’ll grab a lovey and reach for me. On the nights that I’m too tired to respond quickly though, she moves from the Momma chant to a steady cough to an all-out cry of despair.  If she’s sick or teething she may wake again but I feel safe calling her pattern of wakings single. Zuzu was still in our bed at this age and it was around now that she developed a habit of waking every two hours to nurse. If that pattern starts with Sugarplum, I’m guessing my motivation to get her out of the room and fully night-weaned will get much stronger pretty quickly.

Come morning when she is ready to get up though if you aren’t still in the room you’ll find her lovies and blankets oomphed onto the floor. Once she is ready to go she is generally pretty cheerful about it. It’s not uncommon to see her at some point in the day go back to retrieve a lovey or blankie from the floor and carry it around Linus style. As a former, blankie-lovie addict, I’m charmed to say the least.

During the day she still gets a cuddle-bottle with her Dad. It’s a special time for them. It hasn’t hindered her willingness to drink from a sippy cup and I can relate to not wanting to quite give up babyhood yet. We did at least finally move her over to a big-kid carseat. Granted long after she should have, but still she rides happily rear-facing now.  On the weekends though, just about anytime she toddles into a room and spies me at a computer, she goes over to where her boppy nursing pillow and an extra blankie are stored and manages to haul them out of their basket and drag them over to me, whether she’s recently eaten or not. The first time she did it I laughed in delight. Now, well I admit I wouldn’t mind some computer time on my own.

She moved into the one year old room at school and seems to enjoy her buddies, her teacher and the routines. She’s a pretty easy-going learner. She loves going to school. In fact just about the time anyone else gets ready to go anywhere in the house she runs to her shoe box and pulls out a matching pair, takes them to the nearest person with coordinated fine-motor skills, says “Shoe” and plops down to wait patiently for them to be put on her.

She’s been to the doctor quite a bit in this last month. Unfortunately when she gets sick she goes all in. A virus got her, shortly after a cold had gotten her and she was still miserable even after her fever had broke and her rash had faded. She’s had difficulty with her hemoglobin levels and since her 12 month check we’ve had to supplement her food with extra iron in the form of poly-vi-sol. This little girl is not a happy eater. She’s not a huge fan of sweets and generally stays to the meat flavored food variety, but still doesn’t eat her table food with much gusto. The supplement is helping though and at her last visit the hemoglobin level was back up around 11.2. In spite of all of this she’s managed to maintain good weight and height gains and at just under 17 months weighs in at 23.4 lbs and 31.25 inches so we aren’t too worried. Her VSD is almost gone. We had a brief moment of whooping joy thinking it was entirely gone when it couldn’t be spied on her recent echocardiogram, but unfortunately the good Dr. Lucas could still hear it. He said since we can’t see it though it has definitely made progress towards closing and might only be a hair’s width in size. Her functionally bicuspid aortic valve is behaving as well. Her growth since our last visit has been steady and the valve has kept pace. Apparently with type of congenital defect you often end up with some stenosis in the valve during the most rapid growth times, fortunately that hasn’t been the case for her. As she grows and her personality and preferences develop we’ll have to see and adjust how frequently she gets checked. If she is an active, athletic child we’ll stick to annual visits for activity clearance. If she goes the more quiet, scholarly route we may be released to every other year visits until she comes closer to her teenage growth spurt. For now, though she is doing well and is symptom free in terms of cardiac concerns. For that we are grateful.

Her other love that has developed over the summer is for that furry red guy known as Elmo. She’ll happily watch Barney with the Quail, but as soon as she spies the credits, she is up and chanting “More Mo” to anyone who can reach the remote.

And last but not least, is her chatter. She is willing to attempt to repeat on request just about any word you say to her. Diaper, Momma, Abby, Emma, Dada, bottle, diaper, more, all-done, nose, mouth, Elmo, shoe, shirt, bye are the clearest. She probably has a word for Maddie, but I’m not clear what it is. She often calls herself Momma and takes a little coaxing to convince her she actually is separate from me J Our girls are still her biggest fans and Zuzu takes pride in carefully carrying her from one place to the next. Which of course means that Zuzu’s mini-me wants in on the carrying action as well much to Sugarplum’s dismay. The Quail has to settle with just dressing her in a pint-sized apron and including her in her cooking class.

The other funny thing I’ve noticed is the difference in how the girls respond to discipline at their young ages. Sugarplum definitely share’s her sister’s rascally nature. If she gets ahold of an item that clearly belongs or is coveted by another family member she flashes a grin and a giggle over her shoulder as she toddles off with it. And that grin and giggle are there when she is lifted off of a table top and out of whatever cabinet she has taken it upon herself to empty. But her response to being told no is definitely more dramatic than her sisters. At a young age Zuzu did not respond to the word No with much emotion. No was a fact of life, but not one that upset her. The Quail, well she responds to knows with her most charming grin in hopes that you’ll change your mind in her case. Sugarplum though, has only to hear the whisper of no and the pressing of your fingers to the thumb in the signing of no for her spirit to crumble and the crocodile tears to wail out of her. She certainly is less accustomed to being told no. Most of the no’s in the house are directed at keeping her sister’s in line and on task, and she’s quick to lean in and shake a finger at them right alongside the parent in charge. So that response might fade over time, but for now, we try to keep our directives less soul-wrenching for her sake.

This sweet, spirited little sprite of a girl makes my heart soar as she blows her kisses, giggles her grins and nurses us both into a comfortable daze each day. We are so blessed.

corner view: away

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Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!

From the crazy amount of photo sharing I’ve been doing on Facebook this summer, I’ve given a mistaken impression that’s we’ve been “away” much more than we actually have. We had one main trip this summer for a week to California to visit with family and friends. Outside of that we were mostly here hanging by ourselves with the exception of a lovely visit from my parents. We  managed some time at the park, swimming, berry picking, water fountain splashing and a trip  or two up the road into the mountains to escape the humid weather. It’s just that I took *alot* of pictures while we were out west and it took me the better part of the summer to edit them- so I think to others it probably looked like more playtime than it actually was. That said- here was my favorites from our time away. it was a lovely visit with lots of donuts, family, fresh flowers, friends, sand dollars, beach walks & play time, The Huntington Garden in LA, cousin bonding and a reunion of three very special sisters:

With my apologies to Mr. Joel….

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…but sometimes a tender moment just can’t be left alone. Sometimes, at least when I get to bare witness to it I just can’t help but try to snap it up. You know, in picture form.

Tuesday before last was the first day of public 4k for the Quail. She has been so excited to go back to school and asked after it quite regularly. The other day as I was driving her to daycare we passed a bus on the road and I only noticed it because of her chortle, ” School Bus!!!!”

Last year at this time I was completely overwhelmed by the start of public school for our two oldest girls. It was more emotional for me than I anticipated for a host of reasons. This year for the most part, the start of the school year has gone smoothly. There are still a few unanswered questions we’re working on in terms of the Quail’s IEP. At this fall’s first meeting unfortunately I couldn’t bring another cheesecake, with the extent of food allergies in kiddos these days the school went with a school-wide no bringing in and sharing of food policy, and, well I like to be policy compliant 🙂  So as this school year starts, I’m trying to have a bit more faith in things working out and at least adjust my expectations that we are all now on the same page and working towards the same goal until I see otherwise. The teachers and therapists seem genuinely happy to be with our Quail, she seems to feel the same and the IEP is sufficiently detailed for now. In fact, last night I had reports from both private and public 4k on how participatory and well the Quail was doing. What really made my heart swell though, was a note from the public 4k teacher that in addition to the positive report added a line, “Thanks for pressing forward against our concerns.” So last night when I unpacked the girls backpacks and we pulled out the daily book that is sent home for the public 4k kiddos, we all sat down to read it. Zuzu read as the Quail and Sugarplum listened, and for that brief moment in time, I have to say everything felt normal and great. These are the moments to hold on to.

So last week, the first day the Quail was to go to private 4k in the morning, then ride the regular school bus from there to public 4k for lunch and the afternoon session and then return to the private school for the remainder of the afternoon. We hadn’t heard directly from the school bus office as to what time they would be picking her and a little friend who also will be going. It was making me antsy, but Lovey dropped her off and asked and the private school had heard from them. Later in the morning as I reminded myself that surely one of the schools would let me know if something wasn’t going well, Lovey called to ask if I had heard any updates and when I said no, he indicated he was going to call and see how the pick-up went. So…..ok, it went well. Then come 3pm it crossed my mind again to call and see how her day went, but I let it pass again figuring if something was awful I’d hear about it.

When I picked her up she was cheerfully sandy and sweaty- about how I find her everyday on the playground in the Southern summer. I asked how it had gone and staff indicated she came off the bus no problem and seemed to be in a good mood. Zuzu came bounding over about this time and let me know that she had seen Miss L, the teacher’s assistant and was asked to tell her Mommy and Daddy that the Quail had a good day and was a good listener all day. Whew.

So as we started our walk to the car the Quail started to falter and wilt. I asked if she had a good time with Miss D, she said no. Miss J? No. How about the school bus ride? SCHOOOOOLLLLLL BUSSSS!!!!! YAYYYYY!” The silliness returned for all of 5 minutes, before she passed clear out in her carseat.

We ordered happy meals to celebrate our good days and  headed home. When we pulled in the driveway I turned around as Zuzu was again reiterating how good Miss L said the Quail did today and spied her holding the Quail’s hand as she talked.

Tears.

They aren’t hand holders. Not in the least. Generally they’re too busy rascaling to have a tender moment together. But Zuzu, she’s been looking forward to sharing her school with her little sister for quite some time now and I do think she is sincerely proud to have her there. When the Quail first came home from the hospital I arranged myself on the bed getting set up to nurse and in came a doe-eyed Zuzu. So quiet, so watchful, just sitting there as I lifted the Quail to me. It broke my heart as I heard her refer to Momma & the Quail’s room when just a few months earlier she had shared our room, our bed. So I invited her in to join us in tandem and she happily settled in with a quick reach over to catch her sister’s hand.

Then a couple of years later we had reports from school when the Quail was old enough to start coming out on the toddler playground that whenever the class came out and the older kids were out on their playground, you could count on Zuzu and her posse coming over to the fence that separates them to check in on the Quail and sometimes they would see the sisters holding hands through the fence.

Sisters- I think that it is the unconscious moments that say so much of their bond.

back to school week

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…is officially behind us and it’s been a busy one for the Sistred. They each have big changes coming this fall and being the happy little nerds that we are- we’re excited!

Zuzu has finished up her first summer of daycamp. She attended the same facility that she always has but for her age group the summer includes additional outings and activities during the week. Last spring, shortly after we told Zuzu that she was officially signed up for her “camp”. She started fretting over where she had stored her sleeping bag. When I asked why she responded with a, “For camp of course!” We tried to explain that she was not now going to be sleeping over there and in fact she was really just going to be doing more activities with the same teachers and kids without quelching her excitement. Always a balance with her. She had fun though- her first time rollar skating, blackberry picking, she saw a couple movies in theaters (a rare treat in our house due to their ages even though I’m generally happy to see whatever as long as I have a kiddy-cup-combo for myself!), a few rounds of bowling and twice a week water days.  She even got invited to the birthday party of a fellow camper who was turning 12. Once we squeezed in a second week of swim lessons,  let’s just say the girl’s summer was made.

So on to first grade. She admitted she was a bit nervous and checked a couple of times to be sure that we were not going to follow her kindergarten teacher’s explicit end of the year instructions to purchase walkie-talkies so that she could be kept in the loop and at the ready for whatever that teacher needed since rumor had it that her new students were much younger and wouldn’t know half as much as Zuzu’s class. There are some days that Zuzu’s literalness gets the best of her. She was most definitely willing to lend a helping directive or two to the new class. The fact that the teacher that puts the kind in kindergarten sent her a “wish you were here” postcard over the summer probably just cemented the seriousness of those instructions to her.

The other major concern for our rising first grader was  the subject of binders. She had *heard* that certain first grade teachers provided binders and that first graders were to keep track of these. She wondered often and at great length about whether or not she would need to purchase a binder, would it be provided or was the binder a teacher specific issue. When we attended Meet the Teacher a couple of weeks ago, she was absolutely thrilled to see a binder all shiny and filled on the class tables- one for each and every student. The binders contain the homework for the year. It’s an interesting system, pretty different from last year. So for Miss J’s class the year’s focus is to get a good foundation in reading and writing, so Zuzu is to read for 15 minutes each day. Then in said binder is a section for “reader reaction”, spelling games and math games. They are to complete one activity of their choosing from each category each week. There are also some baggy books that come home once a week to practice reading. Being the happy little nerds that we are, Zuzu in all her binder-exuberance dove right in and completed two homework assigments even before the first day of class. I have to say I had to squelch my spoil-sport-I’m-tired-I’m-overwhelmed-I-probably-should-have-weaned-the-baby-before-now-so-I-don’t-have-another-human-being-attached-to-me-on-school-nights- I-have-too-much-to-do-just-now-reaction.

And I did.

I know a lot of people have differing opinions on the value of homework, but right now I have a kid who is excited about it- so I’m going with that.

It’s this funny balance of practical magic that blends its way into Zuzu’s personality that amost always surprises me in the moment and then after the fact I find myself nodding along and thinking, “That’s about right.” The binder joy was not unlike the way she organizes her “facts, rules and routines” along the lines of “writing, not a wishlist/letter to Santa in, but rather placing a rather detailed, terribly specific order; that TJ the Elf must have a very good reason for not having landed in a new spot the next day from where she last saw him the night before; that the Tooth Fairy has made a big mess with glitter like they use at school all over her bed-it’s not fairy dust Mom and that the rascally leprechaun that left green footprints on our kitchen table leading up to the “That’s not gold, it’s chocolate coinsin foil wrappers Mom” in March had gotten into the paint left out on the front porch after her and her sister’s were done painting the day before, rather than being willing to believe he is just green and was barefoot when he left a pile of loot straight out of that pot of gold at the end of the rainbow. She was more excited over the homework binder than the magic spell packet the teacher had made for each child that indicated once they squeezed the playdough and repeated the rhyme if it turned another color, they were certain to have good luck for the year. Mind you, she believed enough to locate a packet that was in her signature color of pink and to work the dough thoroughly enough until she was certain it showed enough of the good luck magic and then excited enough about it to pack it in her backpack to show Miss J her good fortune, but she did all of this while still chattering on about the best spot at home to keep her binder in so that the littles wouldn’t get into the ever-important First Grade Work. I love that kid. We all do.

At daycare they have a homework time and last year I forwarded the class newsletter on to school and homework was completed there. This year I’m not entirely sure what I want to do. I want the binder kept at home so I think we’ll send books to school and have her just focus on reading while she is there and the actual activities we’ll save for home.

The Quail is set for public and private 4k now as well. She started private last week and public starts today. Private feels easy-peasy- we love Miss J and she and the afternoon teacher Miss A are fairly familar with the Quail already. There is also another little friend in her afternoon class who will be attending k4 in the afternoon so it is good she’ll have a buddy when the big school bus comes to pick them up there for afternoon school.

This year’s Meet the Teacher night was cathartic for me. I think a bit for the Quail too since we caught her literally twirling through the halls. Last year I was completely overwhelmed by all that had to be done going to one of them. Aside from meeting the teacher, it was a new building, paying the cafeteria for lunches, a car rider line to get tags, a bus line to find out that our bus wasn’t what they meant, a school packet line, a PTA line, a Girl Scout sign-up line, volunteer training and all during the witching hours with 3 hungry, tired and over-stimulated kids.

Times two.

 Because the Quail was attending the school that had the self-contained classroom, in a town 10 miles away. 

Needless to say we didn’t get everything done and on the way home when Zuzu innocently questioned why we weren’t able to spend as much time at the Quail’s school as her own and why couldn’t the Quail just go to her school to make it easier, I found myself turning up the radio and adjusting the rearview mirror so they wouldn’t have to directly witness how very much I agreed with them.

This year, I intended to be prepared.

One school.

Two kids.

No standing in unnecessary lines.

And possibly Girl Scouts, if a local troop can get together.

We planned to pull in at 2:45, 15 minutes early, childless to get all the lines  and training done efficiently, then run out to pick up the kiddos and bring them back for the fun- actual meeting of the teachers portion of “Meet the teachers”. We pulled up, maybe 5 minutes later than intended- to what can only rival a Who concert.

Lines.Out.The.Door. Wow.

And we forgot to bring the school supplies to drop off. Other than that, it was old hat. Not overwhelming. And frankly good to get to spy so many of our friends and neighbors- exactly the reason why you want your children to go to their homeschool.

So we finished up. It was nice to see the girl’s rooms, both were excited over the little house/kitchen centers that would be part of their day and of course we went down the hall to say a quick hello to our kind kindergarten teachers while we were there than ran off for a celebratory burrito! When she started to joke with Zuzu over helping to teach these new kiddos what all goes on I cut her off with a funny little story of repeated requests to purchase walkie-talkies.

In the weeks leading up to school we managed to fit in a couple of parent-single child lunches with the girls and a trip to our favorite “Big Sale” as Zuzu calls it for back-to-school clothes. And once again I felt oh-so-in-the-know. Growing up, picking out sweaters and jeans and tennies for back to school and then stopping off for a shared cup of cheese fries is one of my happiest memories with my Mom. Last year when I started early trying to create this tradition we were faced with left over, neon, stringy, clearanced summer duds at our usual shopping haunts. This year we skipped the lure of no taxes and held out till the next large-scale consignment sale with the promise of a Panera Breakfast treat and a run through the Halloween Costume rack to see what the options might be AFTER finding our favorite winter jackets, fall vests and a suitable amount of legging/tunic top/dress and tiger wear to carry us into the spring.

Last year the night before classes started we read, The Night Before Kindergarten, The Night Before Preschool & The Kissing Hand, luckily even with our distinct lack of household organization we were able to locate them this year too. Zuzu was a little sad to realize we hadn’t purchased The Night Before First Grade, and I have to admit I was too. I have a feeling I did and lost it over the summer, clutter purging  time will tell.

And the littlest Sistred, well she started her preschool lessons. She moved into the Toddler room and is making herself at home with circle time, playground time, lunch-at-big-kid-tables time and now-I-nap-on-a-mat-like-a-big-kid time. She’s happy to go and happy to be picked up, if not a tad grouchier tired from her busy days. When she and the Quail received their welcome to the next class postcards from their upcoming teachers they were equally tickled.

The Quail also had a home visit from our public school k4 teacher and assistant. I had big plans for this visit- we had blackberries from a recent berry-picking expedition and I thought we might make a cobbler to welcome them and make the house smell homey the night before. Neat in theory, impractical for middle of the week. As it was we managed to take the trash out, put the dishes away and hide the week’s wash from public view. All in all, a good visit.  And we’re excited to start the new year.

I had a dress with apples for Zuzu’s first day, but being the Fashionista that she is, it got the thumbs down and a combination of twinkle-toes, stripes and more stripes won out. The Quail chose Zuzu’s graduation dress to wear to school for her first day today. She smiled her brave smile and carried her Dora Backpack to the car leading the way for her little sister. I’ve purposely not called to see how it went. Her getting off to school on the bus, today that is.

I’m cool.

It’s cool.

But Lovey just called as I was typing this and asked if I had heard anything and said he was thinking he might call the daycare and check in to see how her getting on the bus went anyway.

And that’s cool.

Oh, and it went smooth.

five minute friday: last

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…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

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Dear Sugarplum, she is the last. The tiniest and most intentional of our dear ones. We didn’t know if or when she would come. We thought maybe our Quail would fill that role of baby in our heart and homes. I made peace with this. I ruminated while putting on socks and shoes and changing diapers over the pros and cons of adding on and into our already bursting to full days. And then the pressure let up. No more pumping, no more nursing, no more daily illness and breathing treatments. She walked. She started to talk. The sisters they played together the best of friends- their giggles and tumbles heard throughout their days. Where once they held hands while nursing, they now moved on to holding hands through playground fences and our days filled a regular but routine pattern. And it felt manageable. Ordinary even.

Then one day at an appointment where we opened our calendars to write in a date and time for open heart surgery; instead, the good word that there would be no surgery in our Quail’s future came as a gift from above. No opening of her heart.  That small fact alone opened our own, the trickle and twinkle of a thought that well, just maybe we could welcome one more into our lives. And so we did, that month we made the decision to have another. And 10 months later she came. Her birth, her pregnancy the easiest and yet most traumatic of them all. The room it filled with misunderstanding as I pushed and contracted. Somewhere in the trail of paperwork a note was sent that we were welcoming a second child that would also have Down syndrome like our Quail. Suddenly my world shifted through pain and pushes and dropping blood pressures. I knew this wasn’t the case but in the middle of all of this it was hard to know what was true and what might come. I labored on with insistence to these nurses that filled the small space of this birth. I knew who my children were despite what they read on a chart. My dear doctor, she came in and as we pressed on into the last bit of delivery she stopped me and made us wait. The cord it was tight. Coiled around this dear girl of ours. She pushed back against my pushes and rearranged this young life so that she could take her own deep breaths. That moment when I expected her wail to spread out between us came and passed. Silence instead. Just as piercing that empty sound was. We waited with baited breath for her own first one- and then, after the questions hung between us she wailed and I cried. She was going to be fine.

At last.

Our last.

Our Ordinary After.

Stop.

It’s Buddy Walk Time! Click here to learn more & donate on behalf of our dear Quail!

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Our family is joining in our local community to walk in support of and advocate for individuals with Down syndrome! We hope that through education, inclusion and advocacy the world that surrounds our dear one will be able to see the beauty and gift of a girl that we see. The Quail is 4 years old now. She continues to blossom as a most excellent big and little sister. She currently attends both private and public school. In her free time she loves to run, play with her sisters and help her family out. Wherever her sisters are- she’s right there in the thick of it! We love her so!

Thank you for supporting her and our family. Last year through your love, support and dollars we raised over $600. The impact of each and every one of those dollars however, is priceless.Those of you that work with me will have an opportunity to donate through SCVR’s infamous $5 Jeans Day Fundraisers statewide. We were honored to have our charity chosen by the SCVR Commissioner for Friday September 13th  and very much appreciate this opportunity to raise awareness and support. The local Buddy Walk in Greenville, SC will be held on the campus of Greenville Technical College on the afternoon of Sunday October 6th. Please feel free to join us for a beautiful day of fun, fellowship and advocacy! To learn more and register click here. We would love to see you and your loved ones there!

The NDSS works hard to raise awareness and create opportunities for the 400,000 plus individuals with Down syndrome living in the US and their families. Together with the NDSS & the Down Syndrome Family Alliance of Greenville, we envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their dreams and become active, valued members of their communities.

Click to learn more about the Down Syndrome Family Alliance, the Buddy Walk Fundraiser and the National Down Syndrome Society .

If you would like to donate on behalf of our Quail, please click here!

13 years…..

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 Oh goodness me. Lovey & I were married 13 years ago. It seems like forever ago and yet just the other day. It was a wonderful wedding. Lovely with friends and family and food and fun. I still grin ear to ear when I reminisce over the pictures of our sweet day. It. was. perfect.

And now, 13 years, a sweet if slightly off-kilter two-gabled house in the foothills of the Blue Ridge Mountains, 3 dear girls and many, many happy memories to feather our nest later we had a lovely celebration thanks to our Zuzu who asked a few weeks ago if they could have a babysitter sometime soon, maybe for our Anniversary. Well- what a brilliant idea! We made reservations for the weekend before the actual date at this restaurant and the meal was just as lovely as we had pictured after drooling over the menu.

We are so blessed.

gratitude

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DSC_38931. watching the baby treat the glowworm like her own baby

2. Sugarplum’s pulling down a boppy and blankie and dragging it over to me to nurse just about anytime I sit down at the computer.

3. realizing Zuzu and I have the same eyes down to the hazel mixed in with the blue

4. bad mood’s passing

5. Zuzu’s request to go surprise Daddy with a breakfast treat

6. Dinners with Lovey

7. back to school night for 2!

8, a VSD almost closed

9. a doctor’s reassurance that we are out of the risk of need for open heart surgery

10. a gallon of figs!

11. dinner reservations

12. a salad of avocado, bacon, egg, mozzerella & arugala

13. a  nursing toddler

14. a nursing toddler sleeping through the night

15. kind words

16. new teachers

17. homework binders

18. a 6 year old’s excitement to get started on their homework before school even starts

19. non-disability families getting involved and learning about the disability community

20. end of summer swim lessons

21.  Welcome to the new class letters in the mail

five minute friday: small

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…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

Go:

First she was small and it was big. At least bigger than not existing. This hole, this tiny absense of tissue that once spanned a mere 2-3 mm of space in the center of her heart shouldn’t have existed. A VSD. A tiny missing piece at the very core of her.

That’s what people see and assume when they see her, when they hear about her, when they read about her- that’s she is missing something. Both in her genetic make-up and in her understanding of the world.

But that’s not true. That’s not what Down syndrome is or what it means. She isn’t missing part of her brain, her chromosomes, her understanding, herself. She’s all there and a little bit extra. A little extra genetic material on that infamous Twenty-first chromosome. How it impacts her, how we understand that it impacts her, that is changing. We used to think people like her shouldn’t exist. They should be locked away. Given away. Terminated. An example of an error on the part of nature and God. Slowly, person by person the world is coming to understand that, that “fact” just isn’t the case.  Her existence is not imcompatable with life. It’s quite the opposite. This dear girl, she’s a person, a human being who thinks, learns, understands and acts with choice and free will just as any other human being. She just needs to do it in a little different fashion than other people. In her own way In small ways she is different, yes. But in the big ways, when we take the time to get to know her we find out that those differences don’t have to be big. It’s us that choose to see her that way, not her. That when she and people like her are given the same care and attention that any other human would, that they have the same potential to grow.

To grow like the tissue in the center of her heart has over the last 4 years. Now, that absense of tissue, that space, it’s miniscule. About the width of two hairs according to the doctor as of yesterday.

“She has no restrictions. Don’t limit her.” is our new prognosis.

I have to agree. We won’t, in big ways and small.

Now the differences are small, now that she’s big.

Stop.

Tooth Fairy Time

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Our rising first grader spent her Kindergarten year hoping to lose a tooth at school. You see her friends had done it and when the tooth came out at school they got a visit to the nurse who gifted them a little tooth necklace to deliver their prize home to their parents and The tooth fairy home to. So really, for Zuzu, it was all about getting that necklace. One day she was so determined that she spent recess convincing her BFF to use a paper towel and twist it out for her. This coming from the girl who flinches during nail clippings, screams while her hair is being brushed and used to require a parent to sit on her in order to get her toddler self’s teeth brushed.

But see there was that necklace. She reported back to her teacher at the end of recess with a handful of bloody paper towel and a loose tooth and earned her visit to the nurse. Unfortunately for her, the effort wasn’t quite enough. The nurse would not pull it out, just store it if it came out on its own. By the time I picked her up from after-school and she relayed this story the tooth was perpendicular to its mates.

So began our family’s tradition of outting loose teeth with popsicles. Of course the Sistred are more than happy to join in and eat popsicles in solidarity with Zuzu, loving bunch that they are.

Personally I had no desire to pull out the tooth myself. I remain shocked at her insistence that we help her with each loose one. The look on Lovey’s face as he witnesses her little bloody antics is enough to know he isn’t going to do it either.

So she slowly bites into a popsicle with the though that the cold and biting will enable her gums to numb up a bit as the tooth is wedged down into the ice. And if nothing else, there is the distraction of Momma having handed out popsicles!  Once she’s made her way part through the popsicle I’ve twisted it for her and if it comes out easily she’s good to go. If it doesn’t than back to the drawing board the next night with the possibility of it coming out in school and earning her a necklace.

She’s lost 4 now. The front four and 3 of the grown-up teeth have started to push on through. Our family’s tooth fairy has been waiting for this since she was a little tike. We had purchased a yellow, ladybug covered tooth pillow during a trip to Asheville shortly after she turned one. The first time I was worried the tooth might slip out so we put it in a tiny little bag in the pocket. The next time she actually asked if she just put it in the pocket like a regular kid does. Our tooth fairy leaves gold coins and sprinkles glitter over the sleeping girls. Zuzu has a love/hate relationship with this. She complains about the mess of the glitter, but also refuses to have it brushed out of her hair. Since the Quail and her are sharing a bed, they both go off to school all sparkely for a good few days.

When Zuzu lost her second tooth she got it in her head that she wanted her gold coin AND her tooth. I tried to tell her that wasn’t how it worked, but what do I know according to her six-year-old mind. So our compromise was for her to write the tooth fairy a note and let her answer for her own fairied self. Interestingly the answer was no.

So she heads off in to first grade having grown her third row of molars in and having lost and partially regrown her front four teeth. Ever the eager beaver to take another shot at the school’s coveted necklace treasure!