in which my boot strap breaks, and i do not.

(we've been reading some of the classic stories from winnie the pooh.  hence the title of this post).

i love organization.  i would love to get things to fill every corner of my house that has randomness strewn about.  i can't afford it, so we do it a little at a time instead.  it doesn't stop me from trying though.
some of my organization is necessary to keep things from falling apart here.  if it weren't for meal planning, we would likely be grabbing something quick every night (which is super hard to do gluten free, and doesn't fit in our 'living within our means' goals).  i even have a board that has my 'who is doing what chores daily'.  it fell to the wayside around the time shilo was born, but last week we jumped back in.  full swing baby.  i fulfilled my things every day.  big. fat. check. mark.
and this week.  well, despite my attempt to pull myself up by my bootstraps last week (and being somewhat successful), my strap broke.  i napped during the girl's naptime. i became overwhelmed so i just pretended the board didn't exist for a few days.  and any other time this has happened in my life, i have immediately realized that i am a failure. some other mom out there has way more going on than me, and manages to keep her house immaculate.
but, i'm not a failure this time.  because the board forgot to tell me to run the circle in my house with a giggling four year old (while kicking toys out of the way to keep from falling).  it forgot to mention that i should lay next to shilo on the floor and smile in the mirror at her to watch her respond with her toothless, wiggles, and girns.  it forgets that my children are growing quickly, and if i spend all my time cleaning, doing laundry, washing dishes, and making perfect meals, that i will miss out on a lot.  a lot, a lot.
the board also doesn't recalculate itself when shilo pukes for the tenth time in four hours, and i loudly sigh as i attempt to catch it, and respond to 'can i have a piece of gum?' at the same time.  it forgets to be graceful on days when a papa leaves before anyone else is up, and isn't home until the girls are in bed (and mama feels so overwhelmed she sits on the couch eating annie's snicker doodle bunnies dipped in vanilla icing instead of folding laundry).
do you know what happened when my boot strap broke, and i didn't?  my house stayed mostly clean.  my dishes are still getting done.  laundry is still being done.  and i feel less stressed about it all.  i think my kids might even pick up on my peacefulness a little more.
i'm not great at finding balances in things.  i am often too hard on myself for not doing enough (fill in the blank with the millions of things i should be doing) with my children.  and at the end of the day, i'm realizing that choosing between cleaning and spending time with my husband is often going to have me sitting on the couch sharing stories of the day, and listening to him laugh as he reads one of his favorite blogs (we can pretend it's mine, but i'm not a witty sports writer so it's really not).
i'll take unvacuumed floors with lots of laughter, thank you very much.  oh, and with lots of fun pictures of our family as well.

she's ornery.  do not be fooled.

playing the piano.

candid abigail moment.

papa snuggling little.

mama and her girls.

abigail fooches.

she is mesmerizing.

ballet class.

a fluffy dress is perfect for bike riding.

pretty eyes.

my sister won't. stop. touching. me.

singing

we do a lot of musical stuff at our house.  singing, playing instruments, and just breaking it down to the good morning song a few hundred times a day.  we have been, and are learning to incorporate shilo so that she can feel the music.  laying her on the floor to feel the subwoofer, sitting her on the piano (with jason holding on to her) while i play, or even letting her hands explore the keys to feel the vibrations.
she was super fussy tonight while we were going through bedtime routine, getting meds, and feed ready, and doing her nebulizer.  i tried signing to her, talking to her, patting her, rocking her, she just was fussy.  and then it occured to me that she could feel me talk.  the talking didn't seem to help much, so i tried singing.  it was a beautiful discovery.

i make no claims of being good at singing, singing on key, or even in the right key.  but it seems to work like magic for my little.  also, the video could only be 30 seconds (our computer won't let us edit it for some reason and we had like fifteen minutes worth of video...i can't do that to you) but you can still see how quickly it works.

Make a video - it's fun, easy and free!
www.onetruemedia.com

a letter to my little.

my dearest shilo.
   on days like today, it seems like the odds just keep stacking up against you.  nothing new or large was discovered.  just little things along the way with another, 'oh and she also has this going on.'  some days, i am completely overwhelmed by it all.  not because of how it affects me, but because of how it affects you.  so i wanted to share a few things with you.
   first of all, people are going to call you 'retarded.'  i will do my best to educate (as will papa, and i'm certain your warrior protector, abigail ) people that, that word is ugly, hurtful, and unnecessary, no matter what the circumstance they are using it in. but, mama can't protect you from the world, no matter how hard i try.  so be ready to hear that word.  and when you do, please know that you are fearfully and wonderfully made in the image of God.  you are beautiful.  you are strong.  you are intelligent.
  second of all, lots of people; doctors, teachers, strangers, are going to expect less of you.  i will not.  i will call you to all you are capable of.  sometimes you may feel i'm being unkind. i'm not.  i love you too much to do everything for you or feel sorry for you.  instead, i'm going to tell you that you will have to work four times as hard to accomplish what some people do with no thought going into it.  and when you accomplish those things, because you will, we will cheer a hundred times louder than anyone else ever has.  and when you accomplish those things, you will feel a pride that is indescribable.
    some days, it may seem that all that life has handed you is unfair.  and it is.  but dwelling on the unfairness of life does not get anyone anywhere.  some people seem to walk through life never experiencing the bumps.  some people seem to be continually climbing mountains.  some people have small hills to climb, and they shout, and yell, and dance about as if they want everyone to believe they are climbing a mountain. some of the most amazing people out there are the ones who are climbing mountains, and still smiling.  you can do it baby girl.  you can face life's unfairness, it's harshness, and it's challenges, and you can still smile.  you already do.
   there are people who don't see the value in your life.  but let me tell you, they have never seen the way you smile with your whole body.  how your face squints up, and your toothless gums show.  and how every last inch of you just wiggles with joy when you smile.  they see life through a very limited lens.  and the filter on that lens keeps those who are different out of their sight.  and for that, i am sad.  because you, my daughter, are a type of beauty that everyone should get to experience. given the chance to do this all over again, knowing what we know now, i would fall in love with you all over again.
   you will be given lots of labels in your life, well beyond your diagnoses of Down syndrome.  some are already known, some will come up later.  and every single one of them will be thrown into the trash with all the other lables.  doctors forget that you aren't Down syndrome, hypothyroidism, deaf, congenital heart defects, developmentally and mentally delayed.  you are our little.  our shilo.  the daughter we didn't know we would have, but we are so thankful for.  the one who was gifted us in a surprising and unexpected way.  you are the daughter whom we didn't know we wanted so badly, until we met you.
   we love you sweet little.  we wanted you.  we still want you.  we believe in you.  we know that all the things that satan has meant for harm, God will use for good.  we have seen it before with another girl with lots of labels.  and we know that all things are possible because of who our King is.


mama

photos galore.

a new favorite of our little.

abigail and grandma brenda.

happy to be 4.

shilo and grandpa eric.

grandma, grandpa, and our two girlies.

sleeping in her high chair (abigail insisted she wear the barrette).

mauling her sister.

and again.

watching abigail (and i'm pretty sure she's thinking, please stop laying on me).

abigail likes to show us what she calles her 'crazy eyes.'

hooray, papa got a good one.

and another.

my ornery big.

smiling at mama.

wearing pigtails, i'm pretty certain this was her face to let me know how ridiculous i am.  get used to it shilo....

buddy walk.

raise your hand if you know what the buddy walk is.  i'm betting the only people raising their hand know someone with Down syndrome.
the buddy walk, in indiana, takes place in indianapolis every year.  all the proceeds benefit Down syndrome indiana.  this is the statewide organization that does outreach to people who have Down syndrome, families who have little one's, and people who find themselves getting the news prenatally.
although the national Down syndrome adoption network (the organization that connected shilo's birth mother to us) isn't part of the indiana chapter, it is because of each state's chapter that woman with prenatal diagnoses are able to get more accurate and up to date information that what is often told to them at diagnoses.  they also are able to connect to other families who are already walking the path of raising a little with Ds.
the other thing they are able to do, is encourage parents who say, we don't want to have an abortion, but we really are certain that we are unable to raise a child with special needs.  and voila, they are able to be connected (because all of the chapters across the u.s. can connect with each other) the the ndsan, and talk through the options and choices that are available for placing a little one with a family prepared to raise a little one with Ds.

so as you can probably imagine, we are raising money for Down syndrome indiana, and participating in the walk.  we actually went last year, with some families we had met and been talking to about Down syndrome, and how it had affected their lives.  but this year we get to go with our awesome little in tow.  and she'll be surrounded by so many other people with that third copy of the twenty first chromosome, just like she has.
i set my goal low because i wasn't certain what to set it as honestly, and quickly surpassed the goal (and increased it as a result) and would love for people to give more.  again, none of this money is for us.  it all goes directly to Ds indiana.  feel free to share this blog post, the link to shilo's page, or add her giving button to your blog (if i can figure out how to add it to mine).

without further ado:  shilo's buddy walk giving page (she is part of a team called, 'buddy's beauties' with ten other girlies that also have Ds.  you should check out their pages as well.  lots of those families are the ones that have answered questions, visited, and encouraged through our ups and downs with shilo.)

i'm excited to see how much we bring in for a great organization!  if you are near indianapolis on october 13th, you should come to white river state park, and walk along the canal with us (and a billion other people).  you could meet my two cute kids and, as abigail likes to say, you could watch shilo, 'making nuts.'  (abigail's version when shilo gets wild and crazy with a toy.  i would saying she's going nuts, abigail would say she's making nuts.)

having a pity party.

today was abigail's four year well check.  i didn't have a whole lot of 'what if's' going into it.  i knew we would likely talk about the rash on her chin, and that her (lack of adequate) growth would likely come up.  i was right.   her chin-she licks/chews on her bottom lip.  little dab of this and that, and it should clear back up.  great.
her growth.  well, as always, she eats well, sleeps well, and so on and so forth.  why, oh why, does she not grow well then?  throw in that i mentioned her (extreme) energy level that seems to have grown exponentially over the last year, and her belly ache complaints that aren't uncommon and we got a gluten free trial.
now i'll be completely honest, i have considered it before due to some of her symptoms.  a passing, 'i wonder if it's a food allergy/intolerance.  dyes can have that affect as can gluten.'  but, for whatever reason, i sort of assumed that was just me being the somewhat over thinking mother i am.
so gluten free in the grand scheme of life is nothing more than a little bump in the road.  but our road has jarred me a lot over the last year, and this seemed to be the thing that threw me a little more than i thought it would.  i was fine at the doctor.  i was somewhat okay when we got home. i got sad when she asked for french toast for lunch (i needed to shop for gluten free items), and sadder when she asked for cake.  i lost it at dinnertime when she asked for cake again and began to fight back tears when we tried to explain why she couldn't have it.  and then i cried again after she was in bed while jason cut the rest of her birthday cake up and put on plates to give to the people she decided should get it.

i worked really hard to make abigail the birthday cake she wanted.  she LOVED it.  she was super excited, and everyday since then has talked about what she wants next year.  so maybe i'm being silly, or ridiculous.  maybe i'm just melodramatic, but this was the thing that bummed me out more than anything else.  i thought i would feel sort of deflated about having larry boy cut up after i worked so hard, turns out it's a much bigger bummer for my daughter to not get to enjoy him.

i know that there are much worse things than gluten allergies.  i know this isn't the end of the world.  i even know that , if it turns out she does have one, that i will roll with it just fine.  but i'm having a moment tonight.  and while i don't often let myself do this, i sat and thought through all of the things, for both of my children, and just felt sorry for us all.
i'll go to bed, wake up in the morning, and make a yummy, gluten free snack with abigail that has chocolate chips in it and other things she loves.  i'll thank God that we have the means to be able to go out (after grocery shopping yesterday) and buy some gluten free alternatives for her.  but tonight i will grieve that she doesn't get to eat larry boy, and the possible loss of donut dates with her papa (he's pretty bummed about this as well).  feel free to pour yourself a glass of something cold and come join my pity party.

four.

happy birthday to my sweet, sassy, smart, funny, and intelligent four year old.  she has brought us more joy than i could have ever known.  i have learned so much about being a mama, being a friend, having patience, and being selfless.  i have also learned much about God, and who He is through you being our daughter: from the start of the adoption process, through the day we found out you had NF, through six mri's, three surgeries, and more doctors appointments than i can count.
we are so grateful that we get to be your mama and papa.  our lives are richer, fuller, sweeter, and much more full of laughter because you are in it.

happy fourth birthday big girl.