Jan 30, 2012

{on being a dragon mom...}

there was an article in the new york times a little while back - you can read it here. its beautifully written. & i cry every time i read it.

our situation with isaac is a little different, obviously, than this mom, but a lot of the thoughts she has are ones that i think, too.

we are both mommies to sweet boys that have genetic disorders.
& while her sweet son's life is quite certainly not projected past three years - our timeline is much fuzzier.
we could have three years. we could have 13. we could possibly have more - especially as they're making great progress with the research being doing for Fanconi.

but at the root of it we don't know. & that makes every moment special & sweet.

there is tons of hurt & sadness in not knowing.
but great comfort that God knows.

when i was little - really little - think 3 or 4, we always had little tapes playing that we would sing along with. i feel like i remember those almost more than any i hear now. i still find myself humming them sometimes.
& i sing them all to isaac now, for him to remember someday.

this one in particular i must have learned in sunday school & i hear the line over & over in my head when i'm talking to doctors & planning surgeries, or even when we think about how long we will have isaac with us:

He's got the little bitty babies in his hands. He's got the little bitty babies in his hands.
He's got the little bitty babies in his hands. He's got the whole world in his hands.

maybe that's silly - but there's truth in the little tunes I used to sing. 
not everything that happens will be things that make me glad. to be human is to feel all kinds of emotions. but I can know that God is holding our sweet boy in his hands. & He isn't going to let anything happen to Isaac that isn't supposed to & that is a comfort.

I know thats a big statement. one that brings with it a lot of questions.

but for now i think its enough to say that we know that as parents, we will do everything we can for Isaac, but at the end of the day, its not really up to us at all.

part of this being a dragon mom as daniel now calls me {from the aforementioned article} is pretty cruddy. i have to be an advocate for my son in a world of PhD's - a 23 that looks 16 year old mommy.
where my son's disease is so rare that most of his doctors haven't heard of it...

i don't like that.

i don't like being stubborn & asking questions.

i don't like to cry in front of strangers in offices & in the parking garage.

i do like to please people. i am a people pleaser.
i like to cause as little trouble as possible. 
to blend in. 

isaac makes me speak up when i don't want to.
to forget to be self conscious & timid.
he makes me an asker & a learner.
he makes our family different. & perfect.

everything the world told me for 22 years was that this wasn't the life i wanted.
that it would make things difficult & uncomfortable. all of those things scared me, but come to find out, all of those things i was told weren't totally true.


no one tells you that to truly enjoy laughing you have to cry. a lot. that hard things can make or break a marriage, but if you are committed to making it, you realise you love your spouse more than you thought you ever could. that hot tea & days at home are nicer. that kisses from daniel, smiles from isaac & time with family would be more special.

i am becoming a better person for being a mom of a disabled little boy.

i am four months into being a dragon mom, & this baby is more perfect for me right now than a 'perfect' baby could ever be.

i was so scared of what have a special needs child would mean - & now all i can see are the blessings.

so maybe i don't like having to be a dragon mom in a lot of ways. but maybe, just maybe, being a dragon mom was best for me. maybe i'll be able to tell isaac someday how Jesus knew what He was doing when He made me his mommy. that i wasn't just the right mom for him, but he was the perfect boy for me.

i feel like i couldn't ever totally say what it's like - to be a dragon mom. but in a small way, this is how.

Jan 26, 2012

{holyland's treasures giveaway + a cute sleeping baby}

maybe this is a funny thing to say that i've had my eye out for these past two years, but here it is:


the perfect nose ring.

true story. you can laugh now. or just think i'm ridiculous.

i am of the belief that facial jewelry should subtly enhance. i want people to see me before they see sparkles on my face.

so not too shiny. large. or neon. that's not so much to ask, right?
the keiosks in the mall weren't giving me much help. my diamonds always fell out {is it just me?! maybe i'm just buying cheap stuff...}

so, all i have to say is, i have found them!

this little etsy shop - holyland's treasures has beautiful ones.

etsy has become my go-to for a lot more things like this. for a lot of reasons:
-you're getting something that someone took the time to craft themselves. awesome.
-you're supporting small individuals & businesses. double awesome.
-& the quality of the items are better than anything i would buy at the store. at least that has been my experience so far.

all of that to say i have been super happy with them!
i got a gold & silver hoop & heart stud. & they have really pretty ear cuff's that i love as well!

so maybe this will help someone out that has been looking for just the right ear/nose/whatever ring.
& you can save yourself a trip to the mall, too :)


{first day i've dressed him in a real outfit. aka not a sleeper. thanks nicole ;) }


& for an extra special something, Holylands Treasures is giving away one small gold hoop
{like the one i'm wearing above & can be worn as an earcuff, too. not just for noses} to a lucky someone!

To Enter:
-just leave a comment! you have one week to enter & i'll pick a random winner next week!

Jan 24, 2012

{isaac talks}

video
a minute and a half of our baby talk.
& isaac's, too.
he has made a ton of progress with all of the physical therapy we're doing with him.
we got him onto his tummy for the first time last night.
maybe not such a big deal to most people, but to us, its huge. its been really hard for him to feel comfortable on it with his ostomy. so we are proud.
he's also taken up cooing. all the time.
it's adorable. not quite as much when we want to sleep. but it's too cute to be very upset ever :)

still no update on a surgery time, by the way! we're coordinating with a few different surgeons that all have to be there, so its taking longer to get a date on the calendar than we thought. we'll keep you all posted...

Jan 20, 2012

{colby june}

in honor of the new year - & just for fun, too, there are a few changes to my blog!

one is a new header {isaac was a little jealous his picture wasn't in it}
& i am also partnering up with a few small businesses that are sponsoring my blog, too. i'm super excited about this. they are all shops that i love & they have products that i LOVE.

so every so often there will be little giveaways or promos going on from them, too :)
i so admire anyone that is brave enough to pursue the craft they love & are skilled in & pursue it as their career. wow.

which leads me to colby june.
does anyone remember when i posted this picture a while back & was trying to figure out how to get ahold of these rings? well, thanks to a friend, i figured it out & they led me to colby's etsy! she makes this stuff. fabulous rings, bracelets, necklaces etc...



colby sent me a few of her rings & i can say firsthand that they are fabulous, delicate & pretty.
i'm actually using the silver band she sent over as my wedding band, now.


























i had a super difficult time finding one that looked right with the ring daniel got me - they were all too wide & this is exactly what i had been looking for all this time!

guys, you have about a month until valentine's day…& a little longer to mothers day. or if you are like me, you can get a major head start on christmas ;)

AND…
colby is offering a discount on all the items in her shop from now until the end of february.
i gave you all the wrong code a few days ago, so so sorry. i didn't make it caps. but all is fixed now!
just type in COLEMANSINLOVE15 on your checkout page where it says 'apply shop coupon code'

you can click on the button on the right hand side of the page to get to colby's etsy shop.

Jan 18, 2012

{family//more after}

we are blessed to have some amazing photographer friends! liz took some photos of us three at home just before christmas & we love them! i love having all of these photos to document isaac. he changes so much each week…it's been almost a month since then & i can't believe how much he's grown!!! 
thank you so much for blessing us with these photos, liz! 
all of you admirer's can check out her work, here.







Jan 16, 2012

{fab.com}



iwon't always recommend 'deal of the day' websites…but this one is a keeper.
i have been in love with fab.com.
it has so many beautiful unique home items, & what really did me in, today, was looking at the beautiful kitchen appliances they have on sale right now - including a gold blender, kettle & coffee maker {!!!}
i am a big fan of gold things, if you haven't noticed by now…

i wish these had been around when we first got married, so i thought they were worth sharing!

some of their sale items are still quite pricey. you just have to pick & choose, but its such a great site!

you can view a lot of past items in their fab feed.

right now, you can only become a member by invite, only. but you can use the link here to sign up!

i hope you all enjoy it as much as i do! even if it's just window shopping most of the time :)

Jan 11, 2012

{play time}

raptor baby couldn't quite decide if he wanted to play or cry :)

Jan 9, 2012

{baby boy update}



its been awhile since i've given an update on isaac - so this is kind of long.
its hard to condense things with him, so sorry!

he's still doing really well at home. i'm amazed at how well things have gone these past {almost} two months…

we've had a few little freakouts. i may have called the pediatricians cell kind of late one night when daniel wasn't home.
whoops.
but its just really tricky with him - to know if crying hysterically, or vomiting or whatever else means his shunt isn't working or his colostomy is hurting him or if he's just being a baby. so far, he's just being a baby, & i'm just being a super concerned mom :P

on average, we still have 2 or so doctors to see each week, but things have majorly slowed down. & one of those two is at our home every monday.

in all right now, he has about 12 doctors that are following him 'closely' with quarterly or monthly or whatever else visits just because all of the little uniquenesses about him - they are all totally different & it takes a slew of different doctors to cover them all.

we should be able to cut that list {hopefully} almost in half within the next year or so once a lot of his surgeries are done. or at least into just yearly visits...

the only bit of new info is that we went to see the surgeon that is doing his colostomy. it's a three part deal. they did the first part the day after he was born & last week he told us that isaac is looking well & has grown enough to go ahead & do part two in the next few weeks, which is excellent news for all of us - daniel, isaac & i. {part two is a little hole for his bum, by the way}

we actually feel really really good about this procedure. i'm not looking forward to another surgery, of course. & its still definitely a major surgery, but i'm excited to be on the other side of this one & to be that much closer to being done with ostomy bags!

if all goes well, we could be looking at it ALL being done sometime in may.
so if you think of us in the next few weeks, please be praying that his next surgery goes smoothly!
we'll keep you all posted :)

Jan 5, 2012

{family//after}

more beautiful photos from our dear friend michael.
he came to visit us right after isaac came home & took a few photos of us all.
we tried to repay him with hot cocoa. but i dont feel like it was a totally even trade…

Jan 4, 2012

{happy three months, raptor baby}


isaac makes lots of squeaks that sound like baby dinosaur noises when he's getting hungry.
just one of the things we love about him so much.

he is three months yesterday.

he has made the last three months an adventure.
we're praying for many many more…he makes our family feel so much fuller.
we love you little raptor baby!