questions...and answers

first i wanted to thank everyone for all the support and encouragement that has come our way. thank you.  thank you.  along with this support, a number of questions have been asked, so i thought i'd answer them below.   ++++++

all in all, this whole thing just fucking sucks. i'm constantly trying to convince myself that this decision is the right one. but it's hard. so very hard. and ultimately, this decision...it ends up being my decision and that weighs very heavy on my shoulders. while steve and i discuss everything, i'm the one that does kiele's educational advocating, etc...steve says that whatever i decide, he fully supports. but in the end, he would really love our family to be together. and i know that. and that makes me very, very sad :-(

often while fighting back tears, these questions flood my mind over an over again-- how does one child's educational needs trump everything else? what about the little one's emotional needs? and their need to be with their daddy? and his need to be with us? am i doing a good enough job as a temporary single mother? what am i doing to steve? is he going to resent me for this decision? is it fair to our family? am i letting my own fear get the best of me? am i letting the system beat me? am i giving up and breaking up my family? what the hell is happening here? what have i done?

i'm still numb. and in denial. every now and then things surface and i well up in tears. but things probably won't really hit me until we pack steve up and head for KS.

this just fucking sucks! and damn it...i hate this!

++++++

some questions that have been asked through blog comments and facebook--

What if you home schooled Kiele? Would she still need D-HOH services? this is one question we asked the lawyer: what if i home-schooled kiele. after a lot of information shared by her, she said that she thinks if i home-schooled for that one year, i'd be shooting myself in the foot. there's a lot to this, but she said, ultimately it comes down to...does kiele need the service or not? i shared that the situations are totally different--home-schooling in a quiet, non-distracting environment versus a noisy classroom. she acknowledged that but said that that is not what the district will be looking at--does kiele need the service or not and if home-schooled, kiele would not be using that service.  in the end, i trust the fact that if i home-schooled kiele for that year, i could be hurting the situation for the following move.   how long will he have to stay in KS? steve will be in KS for one year (june to june). he's attending command and general staff college. there's three similar programs and this is the army's version. we were originally supposed to be in RI (the navy's version) and the detailer (assignment person) changed steve's orders to KS because of kiele's education needs, which obviously didn't work out either. the one frustrating thing for me is that this program could be done in correspondence, but there's a certain number of 'in-residence' slots that need to be filled every year, directed by the chief naval officer. steve just happened to get one of these slots.

will you and the kids or steve be able to make trips back and forth on weekends? steve will try and come home every long weekend. the kids and i will probably not travel to KS for weekends, due to the expense of flying the four of us there. we've already concluded...this year is going to be an expensive one for us.

what about the summer? will you be able to spend it together? kiele is going to be spending this summer with her dad. the little ones and i will drive to KS with steve and spend 2-3 weeks with him and then fly back home. after that, we'll probably see him one weekend a month (steve traveling here) unless he happens to have more time off.

'if the military had wanted him to have a family they would have issued him one' is rearing its ugly head. Kansas is close enough to see each other often though, right? obviously, being apart a year on top of the 7 months apart that we just did, is NOT what i wanted. but it's the reality of the military right now. a friend just emailed me words of encouragement and also told me that when her husband gets back from his 6-month deployment, he'll be home for 3 months and then gone again for a year in afghanistan. this is another thing that could possibly happen--steve could get to his next assignment after kansas and have to deploy right away. we just never know. steve has nine years left in the military, which means we could be looking at another four or so deployments (and that's being optimistic). that is the reality of a military family.

What happens after KS? this november, steve will go in front of a board (well his paperwork will), with the potential of making executive officer (XO). this will be the second time he is up for this. the first time, about five guys got screwed--steve was one of them. if steve doesn't make XO this november, my heart will break because i feel like we will have done this all for nothing. all his boxes are checked and he's done everything possible to get selected for XO. i share this because, steve's next assignment greatly depends on whether he is selected for XO or not. so we will know whether steve made XO in december and probably get his next assignment a few months after that.

Where will you go after KS? we really have no idea. we do know that it will be in the US and that it will be near a major medical facility. but where in the US, we really have no idea.

If the school didn't give kiele the service, could you just pay for it yourself? no, we couldn't afford to pay for transcription ourselves. the service is around $30,000 for the one year. but it really boils down to the fact that it's more than the monetary issue--i don't want to give the following location any additional ammunition for keeping transcription from kiele. if we paid for transcription for kiele, i would be giving the following district (after KS) double the ammunition: 1) another state didn't think it was appropriate and 2) the parents are willing to pay for the service themselves.

Can Steve get out of his orders and do something else? i asked steve this question and he doesn't think he can. it's just too late. and like i said before, there is a directed amount of slots that navy EOD must fill and steve just happened to be one of the chosen ones. he also doesn't want to screw himself for XO selection and promotion. this all comes at the sacrifice of our family being together.

++++++

kiele's educational needs are complicated to explain, but let me try just a bit.  deaf/hard-of hearing (DHH) is a low incidence disability, meaning that out of the school-aged population, generally less than 1% are DHH children. due to the rarity of DHH, the schools typically struggle to meet the needs of these children in general. they also often lack the knowledge, to make appropriate decisions (although they would never admit to this). this is especially true with the progressiveness of an oral-deaf child. they just don't know what to do with these kids and what is appropriate.

also, kiele is pretty invisible.  most see her and do not even know she is deaf.  and they don't think she needs anything special (beyond the FM system) in the classroom.  they just see it as she hears... and she talks...and she's just like everyone else. but while she does hear, she hears very differently than us and greatly struggles in the classroom setting. the reality is that without the appropriate services in the classroom, kiele cannot hear a single thing, due to how noisy the classroom is.  we don't realize how very noisy a classroom is because we have the ability to filter the background noise, which kiele lacks. kiele's GATE teacher actually put this to a test one day, when he didn't use the FM or transcription and kiele didn't hear a single thing.  scary, huh?  this also was tested and proven in the sound booth.

so let's play out a possible (and probable) KS scenario:

we move to KS and kiele is enrolled in 7th grade.  i meet with the IEP team and they say, we have oral DHH kids and not a single one in KS has transcription.  why is your child any different?  we think another service is comparable and could be provided to kiele instead.  we're going to give that service to kiele, as we believe that is most appropriate (most likely note-taking, which is not comparable to transcription in any way). i would disagree with their decision and we would proceed to mediation, where a third party person sits in with us, while we try to hash things out. i continue to disagree, advocating that transcription is appropriate for kiele, and we move to due process. at that point, we would meet again, this time with our lawyers. if the disagreement continues, we would then proceed to federal court.

i'm not afraid to do this at all; however, the lawyer informed me that if we went to court, it would take well over a year. and 'well over a year' is something that i just will not have in KS.

if we then move to the next assignment (wherever that may be), they would see that KS did not agree with transcription and that very well could possibly provide them additional ammunition for doing the same. and that is what i cannot have happen, as this whole fighting the system thing would start all over again from scratch...in another state.  

++++++

as i type this, i again think... what am i doing? i need to just fight!  i can't let them win, before even trying.   i need to advocate. not only for kiele, but for all oral-deaf kids. but it's done. we've told the kids and it's done. i can waffle no more. it just fucking sucks. sorry to keep saying it, but it's the one and only thing that i know is true right now.

we're not in kansas anymore!

and i return with my dream of our family remaining a complete family pulled out right from underneath me. just like that. yet from my own doing.

we left for kansas friday morning, so excited about the thought of finding a home, where we could live together under one roof.

we finally made it to KS at 7:30 PM, four hours behind scheduled arrival because of severe thunderstorms, high winds and hail. saturday and sunday, we spent morning to night looking for homes. about 50 all together. exhausted, we were pretty sure that we were going to put in an offer on a home we found in lansing, KS.  on our way back to the hotel sunday night, we spoke with the deaf/hard-of-hearing (DHH) special education lawyer that we had been working with over the months. she shared a bunch of info with us, e.g. out of 90 DHH cases that had gone to due process in her area, only one partially won. that's not good odds...at all!  frustrated, i flat out asked her,

do you think i'm stupid for doing this move for only a year. after a long pause, she said, you want me to be honest? i don't think it's the best idea. me: really? her: people are still having to fight for transcription in CA, where they have supporting case law. what makes you think that they're [the school district] going to give kiele transcription with no supporting case law. and if you end up going to court, it will take more than a year.

while that was super hard to hear, we were so thankful for her honesty. i told her that we might not have to discuss this any further and i would call her back in 5-10 minutes, after i talked to steve.

while still en route to the hotel...we talked. i cried. and then decided that steve will go to KS, while the kids and i stay in san diego. and with that decision, my stomach instantly tightened in knots and my heart ached.

later in the evening, we attempted to have a nice dinner, but it transpired with little conversation or happiness--a sullen mood and more tears. my mind was (and continues to be) flooded with thoughts... alone. sadness. am i making the right decision? what about the little ones? what about steve? how can i do this to the family. how can i not do this for kiele? i have to do this. it's only a year.

on the flight, about an hour from san diego, i looked at steve and said, we're going to be okay. he said, i know we will. but the kids are at such a great age for doing things. i should be with them...especially with all the time off i'll have in kansas. with tears welling, i know. i know.

when we picked up ryder from preschool, after our flight today, the first thing he said, with a tight hug and the biggest smile on his face, did you find a house with a pool?

fighting back the tears, i replied, no, we didn't find a house with a pool. we're not going to move to kansas anymore.  well daddy is. daddy's going to be going to kansas by himself but he'll visit us as much as he can. oh, he replied.

and so, we will do our best. i will find the light again. i will be optimistic again. but that will take time. for the moment, i'm nothing but numb. looking at another year apart. and well...that pretty much just sucks.

the happiest place on earth

we keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths.- walt disney

we are back.  from the happiest place on earth.  unless of course...you're skyler and you don't get to ride the carousel horse with pink flowers that you so had your heart set on riding.  oh to be a five-year-old at the happiest place on earth and have to settle for a horse with a pink saddle and jewels...poor, poor child.

seriously though.  we had the most amazing time.  we were together as a family.  yes, we were together...a complete family of five.  having a blast and not having a worry in the world, except how many rides we can ride before the bulk of the disney crowd arrives, at which time we would head to the pool, for the remainder of our not-a-worry-in-the-world day...not a care in the world except having as much fun in the sun as possible.

oh... and... steve and i determined that while the rest of the US might be in a recession, somehow disney has figured out the magic secret in avoidance of such a recession.  there were so many damn people at disney.  and disney aint cheap!  

one night, we went out for dinner outside of disney and chatted with the restaurant's manager for a bit, who shared with us how business has continued to be really great for them...even through these trying time.  it just amazes me.  and makes me want to throw up.

steve and i also established that neither of us are big of fans of theme parks.  the kids wanted to go.  so we went.  all we really cared about was being together.  and the kids having fun with their daddy.  but the next time, we'll be elsewhere.  if steve has anything to say about it, we'll be on a week-long sailboat trip somewhere, with steve as the ship's captain.  i think kiele would vote for that vacation too.  we will see.   

++++++

the above photo is the only photo i took at disneyland.  for real.  the first two days, i didn't even take my camera into the park.  finally on the third day, i convinced myself that i had to at least take a few pictures.  the first shot i took...was of poor, poor skyler.  the last shot...poor, poor skyler.  and so i was done taking pictures at disneyland.

and now...i am in the middle of a photography cleansing.  i just need a break.  for the moment, i don't want to even pick up my camera.  yes, a break will be good.  i have print orders to finish and then i am done.  okay, not exactly true.  i do have two more sessions before i leave san diego but not for a while.  and so the cleansing continues...at least for a little while.

while i've said this before, i once again proclaimed that i'm getting a point and shoot camera and when we do things as a family, i'm taking only that camera...and i'm not worrying about anything. i'm not worrying about getting the perfect shot.  i'm not worrying about getting the perfect composition.  nothing...just capturing the memories. that's all.  i want to get back to being the mom that took a shitload of snapshots.  what happened to that mom?  i'm digging deep to try and find her again and hoping a new (underwater) point and shoot camera will help bring her back out.  i miss her.

++++++

so now... we're home. back to reality. steve is back to work (ugh!). and we're moving forward...preparing for our move to kansas. lots to finish here. lots to prepare for there. i'm excited for the adventure. yet nervous and anxioius about what lies ahead. definitely a new path--one that i am willing to embrace with arms wide open because if we're going to do this, we're going to do this right. ;-)

he's home...

and i'm so happy...i almost can't stand it!! tomorrow...we're off to disneyland for three days.  together.  as a family.  

my friend, peta (from new zealand), took these photos for us.  love you a million peta.  thank you for your friendship and these most amazing memories!

and now... I AM COMPLETE!

p.s. poor steve.  he's on US overload right now.  just wait till he's on the happiest place on earth tomorrow.

almost

well here i am. five minutes before leaving and blogging. yep. don't want to forget the moments. or the feelings. me: come on guys. we need to get ready to go get daddy. ryder: girls. we're going to iraq. we're going to iraq. we're going to get daddy. me: we're not going to iraq. we're going on base. me thinking: ...forget it.

kiele: mom, you look different. me: why? how do i look different? kiele: you just do. me: how kiele? kiele: you look happy. really, really happy and we haven't seen you like this in a long time. peta: your mum is glowing...from the inside out.

so here we are. signs are up. deployment flag and yellow ribbon down. house is clean. we're dressed up and ready to go. to be complete again.

and kiele's right. i'm really, really happy...the kind of happy that i haven't seen or felt for the past seven months.

talk soon. when i'm complete again.

getting ready

Getting ready to go to the airport for our flight to San Diego.All is on schedule but if there are any changes/delays, I will try to get you an email with the change.

Love you! Steve

getting ready. getting close. so, so close. patiently waiting. for tomorrow to come. when we are whole again and... happy little campers :-)

p.s. thanks leah for the most wonderful family photos that i keep referring to time and time again. i cherish them so. and hope you will love yours as much as i love mine...come this june. xo!

powerful thoughts

if you realized how powerful your thoughts are, you would never think a negative thought again.- peace pilgrim

here i am. waiting. wondering. my stomach in knots. yet butterflies fluttering amongst the knots, all at once. a mix of emotions. a mess of emotions. i catch myself often...with visions of his return. visions of me hugging him tightly. visions of me holding him close, never letting go. i find myself getting teary at the thought of him actually being home again. will it actually happen? finally happen?

knowing that there is a deployment honeymoon phase, i caution myself. and try to bring myself back to reality. then i smack myself and go right back to the honeymoon phase. why should i be thinking anything but? that *is* my reality right now.

we're still battling the flu. but that's okay because i'm hoping it runs its course and we're all (relatively) healthy by the time he returns. to be honest, i think there was a bigger plan. one that i wasn't privy to. but maybe the germs knew and they attacked us at just the right time. if steve had gotten home as scheduled (yesterday), we would have been a mess. a sick mess...literally. ryder got it. i got it. sky got it last night, with a 103 fever. kiele hasn't gotten it...so we will see. for now, we're all thinking healthy, positive thoughts.

and plugging along. continuing to prepare. cleaning. organizing. welcome home signs. laundry. car washing.

still lots of unknowns. a tentative date is all we have. i don't even know if he has left iraq. i just keep hoping. because that's all i have to hold onto right now. hoping...for no sandstorms and a working plane. that they finally take off as scheduled. a safe flight. to arrive as scheduled (for the fourth time)...sometime this weekend. because that's all i have right now. hope. and visions of us being together again.

i so miss him (a screen capture from our last US to iraq skype)!

light at the end of the tunnel

she not only saw a light at the end of the tunnel, she became that light for others.- kobi yamada

so here we are at the end of the tunnel...the light now blinding us, we're so close. today is the day that steve was originally supposed to return from his 7-month deployment. but he's not. as his flight has been delayed a bunch of times and we're now hoping for some time this weekend...hoping! it's a roller coaster of emotions to say the least.

and on top of it all, we've been hit by the flu bug. the regular flu kind. not the swine kind. it started with ryder, who had five days of 102-104 fevers. then me. luckily only body aches and a sore throat. now skyler...whose virus has only affected one eye thus far, making it red and swollen (looks like pink eye but more swollen and no drainage). ryder had the red eye thing too.

we've named our flu virus the red-eyed viral monster, who seems to be enjoying his un-welcomed stay in the schwedhelm home.

initially i was like,

don't these germs know we have a homecoming to attend in a couple days?

but maybe the monster knew exactly what he was doing and graced us with his presence just in time...so that we can all be healthy by the time steve returns. since my friend, peta, woke up with a sore throat this morning, kiele seems to be the last to exhibit any symptoms. we will see. through it all, we've been trying to stay positive.

flooded with emotions, we continue to prepare for steve's return--organizing, cleaning, making welcome home signs. for the moment...still dreaming about being together again.

p.s. did you know that according to the CDC, the regular flu kills over 36,000 people every year.  all this  swine flu hype is driving me crazy.  thank you media for helping the swine flu hype spiral slightly out of control.

excuse my creativity

be aware of wonder.live a balanced life. learn some and think some and draw and paint and sing and dance and play and work every day some. - robert fulghum

max's grandpa is a frequent reader of my blog and after i blogged this post, i got the following email:

Hi Kid! Went into the Anthropolige (sp) in Carlsbad the other day on a mission to beg, buy, or rip-off the "Excuse our creativity" sign for you. No luck! There wasn't one to be found.

then later that day, i got another email:

Me again! There is an "Excuse our creativity" sign for "Deb" waiting for you in the manager's office at the UTC store in La Jolla. Just couldn't let you down on this one!

as i read his email, i was in tears by his kindness...going out of his way to get me one of those signs. i mean really...he would not step a foot in anthropologie otherwise.

so yesterday, i told my friend peta, a photographer who is visiting me for a couple weeks, from new zealand...we need to go pick up that sign from anthropologie. we go into the store and i tell the manager the story. she says,

i'm not sure i can just give you that sign.

i start to get choked up and say,

did you see the sign in the office? does it have my name on it?

yes, but it's not standard policy to just give customers our display signs.

i shared a bit of max's story and what max's grandpa did for me and told her that whether i have to pay for the sign or not, i'm not leaving here without one of those signs. she tells me that she has to ask the visual department, who is currently at lunch and should return in 30 minutes. okay. but before we left anthropologie, the visual department had returned and said it was okay for me to have a sign.

thank goodness b/c i was thinking that i might just have to break into the manager's office and make a run for it.

so please... excuse my creativity.

love ya john! from the bottom of my heart, i thank you.

p.s. here's where our rings started, when we were at the 100 day point until steve's return.  and today, we have only 12 DAYS LEFT!  WOO HOO!

gush-worthy?

flatter me, and i may not believe you.criticize me, and i may not like you. ignore me, and i may not forgive you. encourage me, and i will not forget you. - william arthur ward

am i gush-worthy? i don't think so but zack does and that means the world to me.  and i think the same about him. i actually admire and respect him so--not only his work, but also him as a person.  and his wife rocks too...literally (i met them a while back at zack's awesome one-light workshop).  

my work is the third critique, so you have to be a bit patient.

thanks for the feedback, encouragement and supportive words zack!  

i really can't wait to start shooting for me again.  it's been a while, but soon enough, i'm guessing i will have plenty of me time (in KS).

p.s. i had a couple people ask me about zack's review and why?  my response, why wouldn't i want his review?  shouldn't we, as artists, always seek portfolio reviews and suggestions from those we respect and admire. having only been on this photography journey for three years (picked up SLR in 2006), i think i have lots of room for improvement and growth.

p.s.s. if you missed zack's incredible video that i previously posted, you can find it here.  it is a must watch!!  you won't be disappointed...i promise.

what you leave behind

what you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.- pericles quotes

16 days left. till steve gets home. and i pretty much can't believe it. i'm excited, happy, nervous, anxious...a mess of emotions, to say the least.  i think i may have posted this pic before, but i can't get enough of it--sky's drawing of she and her daddy.

life is very crazy right now. i'm shooting like a mad woman these next couple weeks and trying to get lots of odds and ends done (e.g. putting the jeep up for sale, looking at KS houses for sale, dhh advocacy stuff, cleaning/organizing/purging, etc.). for those of you that have never met me, i'm pretty much an organization freak.

and thoughts of the move, which will happen the beginning of june, has me a bit stressed. yep that equates to an emotional roller coaster kind of mess. of course PMSing doesn't help either. but i keep reminding myself that we have some pretty big life events happening in the very near future and it's okay to be a bit of a mess.  

right?!

i think about leaving here... i've lived in seven different states but leaving san diego is different. i've made some of the best friends ever in my life, while living in san diego. we have friends, who are like parents to steve and i (my kids really do think they're another set of grandparents). and my clients, who i'm so blessed to be able to call friends. sigh!  i think about all the things that i'm going to be leaving behind--things that have woven such a very special place in my heart.  i know that these things will always be with me.  but it's hard.  some days are easier than others.  today is one of those days i want to burst into tears when i think about it all.

but i really do believe that we'll live in san diego again sometime over steve's navy career (he has nine years left)...especially with kiele's disability, which limits the military locations we can live.  

++++++

on another note... the other day, i was driving in the neighborhood and there stood a blind man about 10 feet from the corner. just standing...and waiting.  

this elderly, blind man...he walks over 30 miles every week.  i see him walking at varying locations in the neighborhood almost every day and a couple weeks ago, he and i spoke, in passing. i'm not positive how the conversation started but i had told him it was clear to cross the crosswalk and i think i was telling him how i see him walking all the time. he said,

just because you're old, doesn't mean you can't do lots of walking.  it's great exercise.

i agreed and told him how awesome it was that he walked so much. he never mentioned anything about his blindness factoring into his weekly walks...only his age. he absolutely amazes  and inspires me. seeing him makes me feel such strength and admiration...truly anything is possible; obstacles can be overcome.

but then the other day, there he stood at the corner as cars came and went--not a single one stopping to let the blind man cross. so when it was my turn to stop at the stop sign, i did...and rolled down the passenger window and yelled,

go ahead. you can cross.

his reply,

thanks. you're one in a thousand.

sigh. my heart ached and the thought of that being true--that i was one in a thousand--makes me so very sad.

the message to me... don't ever stop doing those little things b/c you never know when that little thing will mean so very much to another!!

++++++

my dear friend, peta, is visiting the US, from new zealand. i can't say enough about peta. she is beautiful inside and out. she makes me laugh. she makes me a better person when i am with her. she's staying with me for a couple weeks...until steve gets back. how very lucky am i?!!

yesterday, we hung out at the beach. so, so good b/c i basically need to push myself to take breaks and relax. yesterday was one of those moments...beautiful and relaxing.  simply enjoying a gorgeous family day!

and... a new favorite photo for the beach series :-)

i heart it so

if there was an anthropologie anonymous, i think i would have to join.  and i'm sure my husband would agree...but he's in iraq and doesn't quite know the extent of the addiction. okay seriously, i'm not draining our bank account, but it's taking every bit of me not to.  when i'm not shopping for clothes at anthropologie, i'm still there--just browsing for decorating ideas, inspiration, etc. i was in the store the other day and wanted to swipe one of their homemade signs on cardboard that said, excuse our creativity, as they were in redesign mode. i didn't but i did think about asking them if i could buy one. needless to say, i will be making one of my own excuse our creativity signs and displaying it proudly. and when i'm not physically in the store, i'm looking through their catalogue, which so rocks (have you seen their photography?).

when i think about anthropologie, i think of a mix of modern and vintage, put together in the most splendid way.  and that just so happens to be my decor love.  i love modern (really love), but still have this deep-seated love affair with vintage.  our dream home...an eichler, decorated with a perfect mix of mid-century modern and vintage. that will hopefully come after our year-long family sailing adventure.

seriously.  i just heart anthropologie.  and just needed to share with the world (or whoever might read my blog)... hi, my name is deb. and i am an anthropologie addict.

p.s. my dress for steve's homecoming (IN 20 DAYS) is from anthropologie.  where else would it be from? p.s.s. above photo is a screen capture from anthroplogie catalogue.  

i can change the world

how wonderful it is that nobody need wait a single moment before starting to improve the world.- anne frank

a couple thoughts regarding this topic...

first, while i might not be able to change the world in it's entirety, i do feel like i can change things (in some way) for oral deaf/hard-of-hearing (DHH) children for sure.  truly and deeply, i do believe this.  and i believe that this is a path i was meant to be on.  growing up, i never dreamed i'd have a disabled child...a child with special needs.  really, do any of us?  kiele came into my life.  i shed tears at four months old, thinking she was deaf.  relieved when she started responding, life was back to normal...until she was three and officially diagnosed with a moderate to severe hearing loss.  but i can't even begin to share how much kiele has taught me about living and loving life.  she has taught me strength and determination.  and that is only the beginning.  kiele, over the past 12 years, has taught me more than anyone or anything else ever has...and more than i expect anyone or anything else ever will.

during this journey of deafness, i believe we were meant to be in every place we have lived thus far.  starting in arizona, where kiele was diagnosed, we were able to learn and learn fast what hearing loss was was about (at the arizona school for the deaf and the blind).  i also learned that there was lots of support.  

then moving to on to ft walton beach, FL, i learned about mainstreaming and the lack of support.  only to be one-upped by whidbey island, WA, where there was no local support on the island.  but, kiele was implanted at children's seattle (2 hours away) and i was shortly thereafter connected with maura.  we traveled to maura twice a week, so kiele could receive auditory-verbal.  and maura taught me how to advocate and that anything was possible for kiele.  she taught me to never give up on what i believed in and knew was right.  she gave me support beyond words, in a time where school professionals didn't believe in kiele and what i was advocating for.

and then we ended up here in san diego.  scared to death about leaving WA and maura's undying support...there was a special person that answered the phone in the san diego school district DHH education department--that person was carol rice.  i shared with her kiele's story and she said, 

i have the perfect deaf itinerant for you guys.

and she did. she connected us with diane levy, a deaf itinerant teacher.  it's emotional for me even to write about this b/c diane is another person that means so much to me. she's a person that would risk her job to honestly and passionately advocate for her DHH kids.  she taught me that there *are* people within the district that will actually advocate for your child and not get stuck in the politics of it all.  

it's emotional for me b/c i don't think i could ever thank these people enough for what they have done for kiele and i. i don't think i could ever tell them how much they really mean to me. 

i share all this b/c i believe that we all have journeys that we were meant to be on.  some, we might not even realize yet; some that might just fall in our lap and we begin following. follow and embrace your journies b/c you never know what you might learn and where you might end up.  who knows...you might just end up paving the way and changing the path.

++++++

secondly, a friend and i were talking (we've actually had the discussion a few different times) about how we as individuals might not be able to change the entire world but we can do our little part in making our world a better place and quite possibly inspire someone else to do the same.  we have to believe this!!  it's easy to get overwhelmed by the things that are wrong in the world today. how can what i do make a difference?  well, you never know...maybe it just can.  yes, directly or maybe indirectly...we all can play our little part in changing the world for the better.

edward everette hale said it perfectly... i am only one, but i am one. i cannot do everything, but i can do something. and i will not let what i cannot do interfere with what i can do.

what's up?

man, i feel like it's been forever since i blogged. since i really blogged. the weekend before last, i had a mentoring session. and the following weekend...another. i've contemplated mentoring for quite a while and then all of a sudden, it just happened...kind of fell in my lap. i can't say that i had anything specifically written up, but that almost worked out for the best. we talked about anything and everything and went on a shoot together. i was honest and completely open and tried my best to cover everything they requested that i cover. teaching...and giving makes my heart happy and i hope to do much more of it in the very near future.  hopefully crystalynn and katrina got just as much out of the mentoring as i did.  thanks girls!  i had such an awesome time :-)

thanks BJ for this photo of crystalynn and i shooting together.

++++++

and this past weekend, i had the opportunity to photograph a family--a friend of mine and her husband and three kids--before her husband deploys this friday, for six months. at one point, while photographing him and her...snuggling, laughing, sharing, loving--i burst into tears. i didn't expect it to be so emotional, but the fact that they are about to embark on this journey that i am almost done with...well, it just broke my heart. i know they will do great, but...it's still so very hard.  love you pal!

it was right around this moment that set me off and had me in tears...

++++++

all in all, things have been good but pretty darn busy--trying to balance regular life, photography business and now deaf/hard-of-hearing (DHH) advocacy. i'm not really complaining...just trying my best to do...and balance it all (well).

speaking of DHH advocacy, it's another one of those things that i feel i was meant to do in life. completely. entirely.  i see big things in the future--a hope to present at a national DHH convention, creating a oral DHH child website, focused on mainstreamed education and advocacy, paving the way for oral DHH children, etc. with that being said, it all takes time...and 24 hours in a day is just not enough.

++++++

last but not least... only 22 days left. yep, can you believe it? 22 days until our family is complete again...until steve is home...and by my side again. yay, yay, yay!

a day of the ride

life is truly a ride.  we're all strapped in and no one can stop it. when the doctor slaps your behind, he's ripping your ticket and away you go. as you make each passage from youth to adulthood to maturity, sometimes you put your arms up and scream, sometimes you just hang onto that bar in front of you. but the ride is the thing. i think most people can hope for at the end of your life that your hair is messed, you're out of breath and you didn't throw up. - author unkown

yes, yes, yes... it is true. one month. 30 days. one very short month left. until steve is back home. and our family is once again complete.

and with that said, i have so many emotions flooding my head. as i briefly dwell on the six months that has passed, a part of me feels sorry for us, for steve, for all that we missed together...as a family. halloween. our anniversary. thanksgiving. ryder's birthday. christmas. a new year. steve's birthday. kiele's school award. sky stopping wearing night-time pull ups. ryder stopping sucking his thumb. skyler loosing her first tooth. and her second. skyler getting her first school award. and another one. my surgery. easter. kiele's birthday. and that's only the beginning.

and then i remember that it is not what he has missed but about looking forward and being thankful. thankful for so many things. that the time has passed quickly. we are healthy. happy. my husband is safe. that this part of the ride hasn't really been that bad. i have nothing to complain about. and then i feel selfish for even briefly thinking of the things that steve missed...that we missed with him.

so i refocus--think about steve's return and i get butterflies. the time is actually here, the time when i can say with a smile from ear to ear,

my husband is coming home next month!

we will celebrate. enjoy. share. love. laugh. and we will do all of those things...together! but there's a part of me that is scared because while there is immense joy in steve's return, there is also the reality that his return is an adjustment, a reintegration. and that takes time. but with this deployment, our time is cut short and we will move within a month of his return. i try not to stress and worry about this. but the reality is...i do.

yesterday, i tried to talk to steve about our move (do we rent? do we buy? maybe we should just live on post? what school is best for kiele? when do we find the time to visit KS to check things out? do we take the kids on our visit? if not, who will watch them? when will our actual move date be? when do we pack up? etc.) and our conversation ends on a sour note...and it's my fault. frustrated, i cut our conversation short and then couldn't call steve back. no i love you. i miss you. simply,

i think i'm done with this conversation. bye.

i can't apologize. i have to sit and wait. until the next time he calls. i email him with an apology because that is the best i can do. i'm pissed at myself for letting my stress get the best of me. i'm sad that we cannot talk. that i cannot call him back. so deservedly, i wait...and ponder why i acted and reacted the way i did during our conversation.  why i always seem to get so spun up about moving.  i'm mad. at myself. at the situation. i'm frustrated that we're facing one of life's biggest stressors from 8,000 miles away.

so it's back to refocusing, to telling myself... stop worrying. everything will be okay. holy shit...only 30 days left. how exciting. family time. together. and family time is something that our family needs more than anything.

so what can i say about it all.  i'm a mess.  i'm a mess of emotions--excited, stressed, anxious, happy, sad, scared, hopeful, grateful.  

and i can honestly say that at the end of every day, i remind myself that yes, life is a journey. an adventure. a super exciting ride. and i am blessed that my hair is getting pretty damn messy along the way.  that...is a good thing.

yesterday was surgery

a mom is not a person who will fall from the sky.a mom is a person you will only get once. live with her, take care of her and love her. she will do the same to you. i love mom. - kiele marston, age 11

yesterday i had a uterine ablation.  it wasn't a long surgery, but was under general anesthesia.  i knew that i'd have cramping after the surgery, but didn't know how bad it would initially be.  and that...along with the nausea and grogginess from the anesthesia basically kicked my ass.  i slept the entire day and night away yesterday, waking up for only a short bit, at 8 PM.  

my dear friend, mary, drove me back and forth, had dinner and flowers for me at the house, and took care of the little ones all night.  i can't thank her enough for her kindness and willingness to help--to go above and beyond.  i don't know what i would have done without her.  thank you a million mary and jason!  i don't know how i can repay you for your goodness...but i will.

and then this morning, i woke up to this letter, from kiele. and i sobbed. i know i say it often, but she is the most amazing, kind, giving child. it's beyond what words can describe. how is one blessed with such a wonderful child? that's often the question i ask myself. she makes me a better person, that's for sure.

and she is why this move has me so stressed out. a lot of my friends say, don't worry. everything will be fine. things will be okay.

but right now, i don't know they'll be fine.  things are different. they're different and tougher when you have a special needs child that you have to advocate and sometimes fight for. and that is what i will do for kiele. if i have to, i will fight until i have no more breath to fight with. i stress about getting her in the right school. about the possibility of the district challenging the services that have been deemed appropriate for the past four years, while in san diego. i stress about her having a difficult time in the classroom b/c she doesn't have the appropriate services and losing the great love and joy she currently has for school. i basically stress about screwing things up for kiele. i am her advocate. i have to make sure she has what is right...what she needs...what is appropriate. that is my job, as her mother.

i hope you enjoy the little bits of goodness that i can share of kiele.  i wish i could share her with the world.  

the gift of hearing

a friend sent me this link this morning and seeing the photos made my heart melt and tears roll down my face. obviously the photos hit home because we've been truly blessed with this gift--this gift of hearing. yes, kiele, my deaf child, hears!! kiele has a cochlear implant, which i refer to as her bionic ear. she hears at the same levels as a normal hearing person, however, she hears differently. and people with cochlear implants (and hearing aids) still have their challenges...especially listening in noise. this is kiele's internal device, which was surgically attached to her skull and then the electrode fed through her cochlea.

this is her external device, which she wears on her ear. the headpiece attaches to the back of her head, with a magnet, allowing the external and internal devices to communicate...to give kiele sound.  

kiele talks almost the same as you and i (you probably wouldn't even know she was deaf, if you didn't see her cochlear implant). she is in a mainstream 6th grade class at one of the most challenging middle schools here in san diego. she's in the gifted program. she's at the top of her class. she touches the hearts of everyone she meets. i get emails from her teachers regularly on what an amazing child she is. and i can't say it enough...how very blessed and grateful we are.

what i love about the TIME photographs is that you can truly see the joy on so many of the children's faces, as they are fitted with their hearing aids...as they are able to hear, many of them probably for the first time.

yesterday, i got to watch the opposite. the audiologist did some testing on kiele, where they test kiele's hearing in noise, in the sound booth (listening to spoken sentences, with noise in the background). they did the testing using a noise level that was equivalent to the noise level in a standard classroom. kiele did terrible, which was expected and is normal for a hearing impaired child with hearing aids and/or a cochlear implant. this is why DHH kids have to have services like an FM in the classroom. but what i didn't anticipate is how much not hearing would affect kiele. as she tried to listen and repeat the sentences or any word, for that matter, the anguish was displayed all over her face. many times, it looked like she was going to cry. the audiologist had to stop the testing a couple times to let kiele know she was doing great and that the test was supposed to be hard. all of this was done to show how difficult it is in the classroom, if kiele does not have the appropriate DHH services (teacher's FM, pass-around, realtime transcription, etc.).

this is a sample of how kiele hears...what the sounds are like with a cochlear implant.  i always describe it as it kind of sounds darth vader-ish.  kiele has 16 channels but i think the last two channels are turned off because they weren't doing anything.  it really is amazing!!

so with all that said...i'm totally PMSing, which equates to extra emotional...and totally crying as i type this. i just think how blessed we are to live in a time when kiele can have this opportunity to hear. and how grateful i am to have met the people we have along this journey--people who have believed in kiele and believed in her potential. kiele wouldn't be where she is today without them...that's for sure. you know who you are. and i thank you from the bottom of my heart. you will always be a special part of our lives...but you already know that!

photo of kiele is from the other day, when we were playing at the park. we are so blessed!

success

success means having the courage, the determination, and the will to become the person you believe you were meant to be.- george sheehan

as photographers, we are artists. our photographs are the art, which we create. but when is a photographer successful? is it when one makes enough money? whatever enough might be. or when one books enough clients? when one sells enough fine art prints? or maybe success is when one gets published or has a gallery display? that is what a friend and i were talking about the other day.

for me, when it really comes down to it...success is knowing i've done things like this for families.

or getting told by a client,

we're so sad that you're moving...we want you to be our family historian.

that is success! that is what doing this is all about. sure...the money, lots of clients, getting published, having a gallery showing...that's all nice. but there is nothing more rewarding than knowing that you've done your job and your photographs have touched your clients' hearts.

and therefore, i can honestly say... i am a successful photographer.

thank you to all my clients who, over the past 2 1/2 years, have trusted me to capture their children and families. it truly has been my pleasure. i am a better person because of the job i do and the people i have met along this journey. and i can't wait to see what the future holds.

a story and a message

once upon a time, there was this girl. she was a nurse in the air force, forced to get annual physicals and take care of herself. then in 2002, she got married to a navy guy, pregnant and wanted to try and get her oldest a cochlear implant, so she decided to try and get out of the air force. in march 2003, 8 months pregnant...she did. and moved to WA, where her husband had been since oct 2002. in june 2004, she had her baby. in sep 2004, her oldest got a cochlear implant and the girl travelled two-hours one-way, to seattle, for cochlear implant appointments.  nine months after baby number two was born, to her and her husband's surprise, she was pregnant again. her husband deployed when the girl was three months pregnant, leaving her alone with two kids for the next six months. her husband came home a week before baby number three was born. and then they moved to california one month later (jan 2005). with a one month old, a 19 month old and a seven year old, they moved into a house that should have been condemned. in march 2005, they moved down the street, while their house was repaired. july 2005, they moved back in. oct 2005, they had an attic full of rats, maggots that dripped out of the ceiling vents and caught 200 files in two hours. in dec 2006, they moved again, this time to the house they currently reside in. in jan 2006, the girl began to pursue her dream...photography. in june 2006, a photography business was launched. time for self became minimal to none and continued that way for 2 1/2 years. in oct 2008, the girl's husband deployed again, for seven months. but things were different. the girl decided that she needed to begin taking care of herself. it started with running and trying to get into shape. the girl was never really overweight but that wasn't the point; she was grossly out of shape. soon, the girl realized that working out was not only good for the body, it was good for the mind...good for the soul. but the girl also knew that the 'taking care of herself' was more than just working out...she needed a physical, a pap, a mammogram, etc. but she didn't like her current doctor. and couldn't find anyone with her same insurance that was happy with their doctor. there was an option though...to change insurance plans and pay a co-pay, with a max of $1000 out-of-pocket per year. was she okay with that? yep. she decided to make the switch. did some talking, found some good doctors and began making appointments. first was internal medicine. then cardiology follow-up because of a history of a cardiac ablation in 2002. GYN because of terrible periods. dermatology for a skin condition. appointments for all the things she's been complaining about for years. a mammogram. chest x-ray. EKG. 24-hour holter monitor. labwork. ultrasound.  biopsy. and the list goes on. it was all a bit overwhelming at first, with at least three or so appointments per week...but damn, it felt good to get things taken care of. oh but...the girl so feared her mammogram because of all she heard was...

it hurts. they squish your boob so hard. it's so painful.

you know what? it was no big deal!! it didn't hurt. nope, not one bit. sure they squished her boob, but it was just fine. and lasted what...five...ten minutes, max. the girl also found out that they now recommend women to have their first mammogram sometime between age 35 and 40 (it used to be 40). having almost all of her appointment out of the way, the girl now swears that she's going to make those annual appointments...as she's supposed to do.

++++++

i share this with you--busy wives, homemakers, mothers, working women--because it's so easy to forget or put off taking care of yourself. first, my excuse was having babies and raising babies.  then it was my photography business.  well there's really no excuse!  it's so important that we take care of ourselves.  for ourselves. for our families. i have friends my age and younger, dealing with chronic disease and battling cancer. we're not too young.  we're not immune.  go make those appointments that you've been putting off because you're too busy. and damn it, don't be afraid of those tests that we only seem to hear the negative about. it just might not be that bad at all.

my heart is perfect. my cholesterol is high but ratio is good (no medicine...it's been this way since i was 24). i'm anemic. pap is done. had an endometrial biopsy (not that bad either). will probably have a uterine ablation before i leave san diego. skin condition is resolved b/c of appropriate medicine (i unsuccessfully tried to manage this myself for three years and actually made it worse). mammogram and chest xray were done today. i still need a wrist follow-up b/c of 2006 surgery for TFCC tear (my wrist kills daily). i am healthy. i feel good!

i leave you with another sky drawing, because it melts my heart--sky and her daddy. they're so excited to see him. 47 days to go...said with a smile and tears of excitement and anticipation :-)

art, art...i want you

if i write them and then recite them, are they worth being heard?just because i like them... does anybody care? do i dare? i ought to. inspired? my stories. how can i tell? art manifesto... great ideas come from great bike rides. pass it on. art will take you places. plant seeds. a broken heart can make great art. experiment. don't care too much. - as seen in the drawings of andrea dorfman, in the music video for tanya davis' song Art

got this link from a friend's blog. so awesome. see for yourself. watch it here.

i'm so grateful, so blessed to be doing what i love. yes... art can take you places. places beyond your wildest dreams. 

++++++

on another note. assignment stuff is complicated. still waiting for medical and educational paperwork (mess) to be completed and then i have to patiently wait for it all to go through the appropriate military channels. once that happens, kiele (and in turn, steve) will get put into an Exceptional Family Member (EFM) category. when we were at whidbey, kiele got categorized as EFM 5, which got us to san diego and put us on homestead status (limiting us to norfolk, DC and here). i have no idea what category kiele will end up being now. i'm hoping for 3 or 4--3 means no overseas; 4 means no overseas and near major medical center / major city. if kiele ends up being EFM 5 again, which i fear, i'm not sure what that will mean for us. i worry about the EFM coordinators getting jilted by the fact that kiele needs to see a cochlear implant audiologist monthly. i just don't know what will come of it all...will steve be able to keep his assignment to war college? if he does, will we be able to accompany him? or maybe steve's assignment will totally change? i. just. don't. know. sigh!

for now, we have to just keep plugging along... steve is going to call the detailer tomorrow to discuss changing his assignment to KS, which they discussed as a possibility last week. after lots of research, we decided that KS has much better options for kiele's DHH educational needs. if steve does get the KS assignment (and we can go), we'll move much earlier than anticipated b/c steve's school start date will be 1 july.

++++++

i've also been keeping really busy the past couple weeks with sessions and donated work. just today, i finished another book, the portrait book--this time for warren-walker's school auction. :-)