Friday, March 29, 2013

[Insert Profanities Here]

Okay, so there's a ton of good stuff going on over here (like the absolutely perfect new house we found, that we will be moving to in less than a month.  A house that Sammie B can navigate completely by scooting, using her gait trainer, or using a power chair if we go in that direction . . . perfect), but there's also a lot of, um, shitty, and tonight, I'm allowing myself to linger in the shitty and just be mad and disappointed.

We didn't get into either of the great charter schools we wanted to.  Our lottery numbers weren't picked.   For one, we don't yet know where we fall on the wait list (so still some hope), but for the other we are pretty stinking far down.  Honest to God, I'd move mountains if that's what it took to get Sammie B into a great school that's just right for her, but I don't think our district has it.  I really don't.  I think they either have special education-only placements that are inappropriate for a number of reasons or mainstream kindergarten classes where the class sizes are ridiculous and she'd get lost in the mix.   We KNOW that she's been lost in the mix in her current preschool class, because the mix is one where the majority of the kids are there for speech/behavioral issues and they demand much of the teachers' attention.  Our girl, who can't move around and cause trouble and is content to just sit quietly and look around, is stuck doing JUST THAT, and she so often shuts down.  She barely talks at school even though at home she's rarely quiet.  I honestly don't know where we go from here.  Her birthday is 6 days before the kindergarten cutoff, and while I'm pretty sure we want her to have an extra year before starting actual kindergarten, I know the district is going to push for kindergarten, and I'm not sure another year in preschool is the answer anyway . . . that's why I wanted one of the two transitional/developmental kindergarten programs (that last two years).   So, now what?  I have no idea.   I've set up tours of two private schools (including one that told me they likely won't have spots but I can come look anyway) that are geared toward kids with special needs, though not really toward kids with physical challenges, more toward kids with autism and sensory issues.  But, we'll look at them.  I've toyed with the idea of pulling her out and just sending her to a small, nurturing preschool for a year (private) but we'd have to send our nanny as a one:one, and the cost (of both private preschool + full-time nanny) is no joke.  And, with a private preschool, there's no PT, no OT, no one to support her physically at school.  They won't have adaptive seating.  They won't have adaptive PE.  It'll be on us to forge that path, and hope that they follow our lead.  I honestly am at a loss.  I am going to make an appointment with a developmental pediatrician that we saw prior to preschool, because we need someone else to weigh in and help us on this one.  

I've realized that my girl progressed more in the ONE year she was at her little UCLA program than the two years she's been at this public preschool.  I've realized that when we sit down for IEPs and conferences, they tell us in such dry black & white terms what goals she hasn't met and what goals she has, but most of them don't seem all that vested in her (with the exception of the OT, Bless Her!) or her progress.  She's just another kid to them.  And so that makes me want to RUN to another, smaller district, but that would have consequences too (less PTs, less OTs, less equipment . . . less special education experience . . . though I'm starting to wonder if that's all bad.  Being vested in a child is far more important than experience, but there's no guarantee we would get that "investment" anywhere).    

On top of that, we are having doubts about our new nanny's level of engagement -- there's a lot of sitting Sammie B in a chair and putting one game after another in front of her, and not nearly enough active play or engagement.  There's been no planned activities (which is literally why we chose this nanny over another -- her prior preschool experience -- we thought she'd be fabulous at being proactive and planning art projects, lessons, etc. and she's done zero of that).  I'm going to talk to her this week when we find a chance without Sammie B around, but the thing is . . . I'm pissed that I have to.  

I'm sad.  My girl deserves the best -- both for school and childcare, and I can't help but just be pissed tonight that I feel like right now, everything about her daytime existence -- school, the nanny --  is just mediocre at best, and that her progress will be hampered by others' mediocrity.   It's just not acceptable. I hate it. 

I'm working more than I've worked since 2010, and that's stinking a bunch too.  I'm overwhelmed.  I'm tired.  I need sleep.  I have a raging sinus infection.   I like my cases right now a lot, and I said this was my year . . . my year to kill it at work right before I go up for partner . . . but killing it is killing me, and there's not even a semblance of balance in my life right now.  Mia wakes up now in the mornings (oh and at night because she's also teething . . . and so on top of working 16 hour days, I'm waking up at least once a night with that little bug) and she asks for B first, not me, and that hurts.  I had big plans to leave work early yesterday to try to make it to Mia's Easter Egg hunt at school, which started at 3:30 and (of course) at 10 am, a partner asked to meet with me about our case and her only availability was . . . at 3:30.   I'd already planned to be out of the office today for an appointment with Sam (and to finally drag my own ass to the doctor for above-mentioned sinus infection), so I couldn't tell the partner "no."   So, as 3:15 rolled around, and I prepared for the meeting instead of being en route to Mia's day care, I sat at my desk and cried.  I still leave work (most nights) in time to be home for the last part of dinner, bath and bedtime, but I feel like I'm rushing through all of it because of the pile of work that awaits me when the girls are sleeping, or checking my emails while doing all those other things because the rest of my case team is still in the office and I don't want to be perceived as "less than" any of them in terms of importance to the team.   I'm barely sleeping at all.  It's exhausting.  I know this work is cyclical.  I know a not-busy time will come, but right now. . . . I'm exhausted.  

And as I sit here, I just wrote my non-work to do list for the week -- pay bills, get movers, apply for permit to waive out of our school district, apply for permit to waive into every other surrounding district (having no idea right now if that's what we even want, but the deadlines are the end of April so even if there's a chance we want to do that, need to get the wheels moving), set up meetings with special education people in those other districts to find out which ones we might even want to be waived into, tour two private transitional kindergarten programs, call lovely hippy dippy private preschool that I put Sammie B on the wait list for when she was 6 months old that has been holding us a spot for two years "just in case," . . . . go tour there.   See if we could make that work for a year while we figure out kindergarten.  (It is a LOVELY little preschool, and the outside play area is a garden, water table, etc. . . . all stuff my girl would love so much . . . so maybe this is what we do.   But then, we lose PT/OT support at school, we lose the benefit of adaptive equipment at school . . . the thing is though all those services through our district have proven to be mediocre at best, and we continue to do our private therapies anyway . . . so maybe not such a big loss?  But the equipment thing is a big deal.  We could try to purchase some of it ourselves, but we are talking expensive stuff. . . .)  My head is swimming.   Swimming.   

I'm tired.  I'm mad.  I'm really, really disappointed.  And, I hate when things are so damn out of my control.   And, I hate mediocrity.  Especially when it comes to services and care and stuff for my girls.   Hate it.  

And, you  know what?  I'm hitting "publish" without even proofreading.  Because it is that kind of night. 

Wednesday, March 20, 2013

Rewind Wednesday: Where did "Baby Mia" go?

Lately, the fact that my "baby Mia" has suddenly become a "kid" as opposed to a baby, is just knocking me over. 

It sounds so trite, but it really, really does feel like just yesterday, this baby was sleeping in my arms (or more appropriately, strapped to me in a wrap non-stop):

But suddenly, she's a little girl . . . .

A little girl who says "no" (all the time, in her world, "no" means "no," and "no" also means "yes") and is suddenly combining two words (funny thing -- Sammie B's first two-word combo was "no dude!" and Mia's was, appropriately, "hi dude!" (our dog is dude!)).  A little girl who turns and waves and says "bye!" when I drop her off at day care in the morning (but always comes running and saying "mama!" when we are reunited at home in the evenings).   A little girl who loves loves loves to play with baby dolls and gives them bottles and puts then down for naps, patting their backs and saying "shhhh!'  A little girl with shaggy, messy hair that refuses to wear barrettes. A little girl who could care less that her shaggy bangs are in her eyes; and who can leave the house looking totally put together in the morning and like a total ragamuffin within an hour.  A little girl who says "help!" and "potty" and so many, many things.  A little girl that watches everything her sister does, and freely gives her sister hugs, kisses and pats on the back.  A little girl who sees my phone and says, with giddy excitement, "dada!" until I show her a picture of him on my phone (at which point she squeals again, takes my phone, holds it to her ear and says "hello!")  A little girl who is so, so full of love.  Of curiousity.  Of joy.   Of sunshine.  A tiny little person who is so fiercely independent, who threw the temper tantrum of all tantrums the other night because I tried to help her put her pants on . . . a little girl who, though fiercely independent, sees her mama walk in the room, or feels tired or whiny or sad and can't help but run to me saying "mama mama!" and burying her head in my shoulder.    (And I melt.)    Mia Mia gives big love.  Big tantrums.  Big smiles.   Big fun.  Mia Mia is just so . . . big.   She knocks my socks off. 

Mia, I wonder often whether, as you get older, if you will ever feel slighted because your sister may necessarily get a little more attention from time to time because she needs some extra help, or if this blog will make you feel like you weren't the center of my universe because it is a little Sammie B-centric.  But, my love, this blog is about OUR journey.  Together.  All of ours.  And know this: you and your sister SHARE the center of my universe.  And I love you with my whole heart and all that I am.  You my darling are my one and only Mia Mia.  And oh how I adore you.  - Your ever-lovin' mama. 

Sunday, March 17, 2013

Perspective -- Taking Off

Today, we went to the Abilities Expo in LA, which we also went to last year.  And, just as I felt leaving last year, this year, I felt so, so full.  It is amazing to see the possibilities in adaptive equipment . . . things to ensure that someone's physical challenges do not have to be "limits."   All-terrain wheelchairs for the beach, scuba driving equipment and instructors for parapalegics, adaptive Harley's (!) . . . all just amazing, amazing, amazing.   (Though, I will say, taking a step back and realizing the costs of these things is more than a little discouraging.   What we are learning is this --- insurance only covers what is "medically necessary" for someone with disabilities -- not things to make their lives easier or allow a them to interact with world in a more "typical" way,  but just what is "medically necessary" and that's really, the bare minimum.  The bare minimum or what is only "necessary" is certainly not enough for my girl.  So, today, even though I was encouraged to see (again) what incredible and amazing possibilities there are, the fact that these "possibilties" are really only affordable for the 2.5% or so of the population that can afford them . . . is depressing and overwhelming, to say the least).

Anyway, the things we wanted to do today were to (1) look at pediatric wheelchairs (power and manual) and see if we could convince a certain stubborn little lady in lavender glasses to give either a whirl, (2) talk to vendors about funding sources for both, and (3) look at adaptive vans.

So, I'll just get this out of the way so I can turn back to the happy happy parts of the day:  the only tears I had in my eyes all day (other than happy ones that is) were when I walked away from the converted, adaptive van display.  To have a van, exactly like the one we have right now (which is by no stretch a luxury vehicle), equipped to load Sammie B and a power chair into . . . $49,000.   Yep.   So, I cried.   I walked away sad and mad, and thinking through how we'll finagle that cost.   And what it will mean for us logistically that we'll really only have one car that can transport our girl.   Right now, she is regularly in three different cars . . . B's, mine, and our nanny's.   There's no way we can possibly buy another car to have as an extra, which will be required if our nanny needs to use my van during the day (and we sure as hell won't be able to afford an "extra" after paying that much for a van!).   Blech.  Damn.  Darn.  Shit.  Boo.  End of rant.

Here's the thing . . . the rest of the day was happy.  Amazing.   The people working these pediatric chair vendor displays are amazing.   Amazing.  At first, Sammie B was too afraid to even sit in the power chair, but they got out an adult one for B to try, and Sammie B sat in his lap and drove it all over a big open space -- zipping around, screaming with glee.   Then, we went to a booth for small, lightweight sport chairs (manual) and talked her into trying one, and showed her how to move the wheels.  She said, "bye! I'm leaving!" and off she went . . .(backward, but whatever).   My eyes filled with tears -- the happy kind -- and my heart felt so, so full.   There was another mom there whose 5 year old son was also trying one for the first time, and I said, "I thought I'd cry the first time I saw her in a wheelchair.  I thought I'd be sad, but my heart is leaping out of my chest right now . . . " she said, "I know!" and so both of our eyes filled with tears, and mine overflowed.  A moment.  A  really awesome moment.  

Before we left, we went back by the power chair display and I decided just to put Sammie B in one whether she said "no" or not (sometimes, with her, we have to just do that . . . pushing her a teeny bit past her comfort zone).  She loved playing with the "up and down" buttons and making the chair go up and down, but didn't want to make it go, until I said "hey, how about you go chase Mia - maybe you can run her over?"  And, so it goes.   Mia was running around a big wide open area of the Expo and Sammie B was zipping around right behind her while B chased after Sammie trying to keep HER safe and not let her ram into anything (like a $49,000 minivan) while I ran after Mia trying to keep her from getting run over (by her sister in a 300 lb power chair).  With the sweetest, most incredible OT from Sweden (who worked for the power chair company) running around with us, thrilled for all of us.  Getting it.  Getting that this was the first time we were all just zipping around together, some running, one wheeling, but either way . . . zipping around.   Chasing and being chased.   I can't think of any more perfect moment than that one.  

Sammie B trying out the purple manual chair; Mia didn't want to be left out!

Friday, March 15, 2013

Rewind Wednesday (a day late)

I'm traveling for work this week, and if you have been reading this blog for long, you know my theory is that if I have to be away from my family, I'll make it count, so I've been working non-stop, and sort of skipped Wednesday entirely.  But here I am, rewinding, with a couple pictures from a trip B and I took back in November (or Movember, if you will).  

On Monday, B and I celebrated 7 years of marriage.  Seven.  And, if I'm being honest, this year was, by far, the hardest of them all.  If there ever was a year I had my doubts about "making" it to our anniversary, it was this one.  We've had our challenges big and small, most of which just don't belong on my blog, for all the interwebs to read. 

But here's the deal.  We are working on it.  Working on us.  Working on making 7 into 8 into 9 into 10 into 50.  One day at a time. 

So, with that I say this:  Here's to 7.  Here's to marriage.  Here's to admitting when its hard, but committing to making it through the hard.  Here's to admitting that marriage is hard work, and committing to actually doing the work it takes.  Here's to hopefully, hopefully, being models of love and light for our children a little more. 

Here's to all of that. 

Here's to him.  

(Here's to Movember only coming once a year too!)

Monday, March 11, 2013

The Spot Where We Are

This post will be a doozy.    A whole lot of thoughts and worries and wondering in my head and heart these days, and it is time to just sit and pour them out.  As I start to type, I already feel the tears welling up in my eyes, so that probably means this (not-so-little) little blog post is long overdue. 

We have hit a rough spot with our little lady.  Our usually sunny, laid back little lady has been . . . a bit contrarian lately.  Much whining, more crying than normal, and a whole lot of “no’s.”   She just seems so frustrated.  Her PT has noticed.  We have noticed.  I’ve gone around and around and around in my head trying to put my finger on what “it” is.  What “it” is that’s bothering my girl, and well, I think there’s so much going on, that I’d need multiple fingers to put on “it,” and oh how I wish I could just “fix” it all for her.  To get inside her little head and hear her inner thoughts, to wrap myself around her heart and just somehow make her struggle less.  I’d give anything.  Absolutely anything. 

In December, we fired our nanny of over three years.  Sam’s best friend.  It all went down in an ugly, ugly, here-today-gone-tomorrow kind of way (it had to be and to protect everyone’s dignity involved, though I’m not sure said nanny deserves that favor from me, I’ll skip the details).  She left on a Thursday afternoon, and that was that.  I worked from home for a month while we looked for a replacement, and well, it was a hard month.  For the first few weeks, Sammie B was just digging having me at home, but then, as time went on, she missed her friend, particularly when school started back after the holiday (remember that our nanny goes to school with Sammie B as her one:one aide).  Then she was just sad.  One morning before school, she asked me if her nanny was coming to school and when I said “no, love, remember we talked about this?,” she said, “well can you stay? It’s a little bit hard for me.”   And my heart crumbled.  We found a replacement in early January who just did not work out, so then we found another. . . so Sam has been through a lot of transitioning.  It has not been easy.  And while the person we found is great with Sammie at school and therapies, she’s not as active or engaging as we might like, and, well, I think Sam is struggling.  Struggling with the transition, struggling to learn to trust this new person, struggling with missing her old person.   And as a result, so am I.  This job of mine is not easy.  And truthfully, I haven’t come to work and truly had peace of mind that my girl was happy and in the best hands -- the hands of someone who loved her -- since December 12.  That’s a long time of worrying and wondering.   But we continue to work at this, to talk to the nanny, to try to make it right.  To talk to Sammie B about her days, to talk to her about how her nanny helps her, etc.  And, just to figure it all out.  This short paragraph does not even begin to describe the feelings behind all of this stuff but it’s the best I can do while not giving too many details.  I lost a friend in all of this, my girl lost her best friend, and well . . . it just plain sucked.   People are disappointing sometimes.  Hugely disappointing.  

We’ve also noticed for awhile that Sammie B seems to be having a harder than usual time with her eyes.  She had strabismus surgery as a baby because her eyes were going in (esotropia) and we always knew with that that there was a risk of being overcorrected or otherwise needing a repeat surgery.   Well, so it goes.  She needs it.  We suspected it for awhile -- her eyes go out a little bit and you can see her making a concerted effort to bring them back in, but we tweaked her prescription and hoped that would do the trick, and it didn’t.  So, we go back in for surgery.  That makes me sad.  As I type those words --  “a concerted effort to bring her eyes back in . . .”  I'm acutely aware that this is something we all take so, so for granted, and yet she has to make a “concerted effort” to do.  That plain sucks too.

As I said in a recent post, Sammie B has just taken to her walker and is doing really well in it in the house and for short distances.  And that makes our hearts so, so happy.   But lately, even though her Kidwalk is an incredible source of freedom, it has also been -- at times -- a source of frustration too.  She gets stuck sometimes turning corners, or drops something and can’t bend down to pick it up, or can’t get quite close enough to something she wants, and she gets frustrated.   Crying, upset, frustrated.  And, it so, so hurts my heart.  I watch her watch her sister and try to go after her, and she gets frustrated when she can’t go fast enough.  I hear the absolute heartbreak in her voice when her sister takes something from her and she can’t chase to get it back.  I hear her sad (and angry) little voice say “NO MIA, YOU CANNOT HAVE THAT!” as Mia so easily takes something from her sister’s hands and walks away . . . (This, will, no doubt, be better in time as Mia matures and understands her sister better).  I hear an almost desperation in her voice when she wants us to help her get into the Kidwalk and we take too long.   “I want my walker right now!”  I struggle between knowing we have to tell her not to be too bossy, too demanding, and realize that . . . that walker is like her legs.  

I think all of this has contributed to a very contrarian little girl who is also just fed up with therapies.  And frankly, I cannot blame her.  Since she was six months old, she’s been in physical therapy, then occupational therapy was added, then speech therapy.  Having an adult tell her how to play.  Making her work to play. (Imagine coloring a picture and having to walk ten feet every time you want a new marker so that play is also "work.")   And so, now, at four, she’s just asserting herself and flat out refusing to cooperate in PT.   It is tough because we know she needs it.   But at the same time, it may be time for a (short) break.   Which would be an easier decision to make if I knew she was getting enough active play with her nanny, but I don’t.  We know that she has not plateaued physically -- we are seeing so much more movement than ever before at home -- but it may be that she’s plateaued a little with her current therapist.  She’s literally played with every stinking toy in that clinic now, and well, as her therapist said, “I’m just having a really hard time tricking her into working . . . . “  Sammie B is not easily tricked, we know that.   And, ever since the beginning, one therapist after another has told us “she’s too smart for my usual tricks -- they don’t work with her!”  I honestly don’t know what direction to go on this one, but we are thinking and ruminating and trying to figure it out.  We drive an hour each way for PT, though, and I have always been able to justify that (since we switched to that clinic almost two years ago) because they are so amazing there, and she was getting so much out of it.  Right now, though, she’s getting less and less out of it (by her own doing!) so maybe it is time to rethink it all.   To recognize a new “season” in our lives and look for a change.  I trust those therapists implicitly so this one is hard for me. 

On top of all of this, I’m also working more than I have in a very, very long time.  It is terrible timing because all I really want to do is stick by my girl’s side and help her through this time.  And, I can’t.  Because of the childcare situation, I worked from home all of December so my hours were low.  I’m (hopefully) up for partner this fall, and well, we need my income in the most desperate way.  So I work, work and try to balance it all.  I try (and somewhat succeed) at letting the “overtime” so to speak only spill into my sleeping time and still stay afloat with the girls.   Still being “mama," but I only succeed sometimes, and the work calls and emails invariably spill over into my “mama” and family time and so in the car to and from appointments on my Wednesdays “off,” I do conference calls and let Sammie B watch movies in the van, and I feel so, so guilty, and I long to be able to just be present in the moment, wherever I am. . . present at work and not worrying about the nanny situation, present at home and not worrying about work.  Being "present" has turned out to be something so very elusive.  

And, in the midst of all of this, we are in a tough spot with school for next year.  Sammie B’s birthday is Sept. 24.  A mere seven days before the kindergarten cutoff for our district, which means, come IEP time, they are going to push for us to put her in kindergarten next year, before she’s even five.  If we were not in the public pre-school program, it wouldn’t matter -- we’d have the choice of keeping her in preschool another year, but because we utilize the special education services (services that just are not available in a private preschool setting) we may not have that option.  We are sort of beside ourselves trying to figure out what to do.  Sammie B tests ahead of age cognitively in a one:one setting (e.g., with a developmental pediatrician) but that is not translating into the school environment, even now, in a preschool class of just 12 kids, she gets overwhelmed (we think) and just sort of shuts down.  She’s quiet, does not participate that much and hardly talks.  At home, she’s counting to 30 and recognizing letters, asking questions questions questions, and spelling her name out loud, but at school. . . . she will not do any of those things on demand.  We know she’s paying attention and taking it all in, because she demonstrates what she’s learned to us at home, but it is not showing at school, and we don’t know what to do about it.  The special education-only placements seem inappropriate, yet, we can’t imagine putting her in a kindergarten classroom with 25+ kids who are all older and faster and bigger than her.  Just can’t fathom it.  We could push for another year of pre-school, but she's now done that curriculum two years in a row, so that may not be the best option either (though we think that year could benefit her in terms of social and emotional development).  Not knowing what to do, we have entered the “lottery” for some amazing public transitional kindergarten programs (one of which I toured and literally cried during the tour because I knew it would be so perfect), and we pray and keep our fingers crossed and hope beyond hope that it all works out.  That we “win” this lottery.  That one of the "one in fifty six" chances of getting in is OURS.  The thing is, I’m an incredible advocate (and with B by my side, even a pleasant one most of the time).  I feel like if there was a perfect program, I could fight and get her in . . . but when there is no perfect program, or even a “great” program that seems like a fit . . . when there just does not seem to be a fit at all, I don’t even know what I want to advocate for and I just feel lost.  Lost.  So, back to waiting and hoping.  On a silly lottery that is so, so out of our control.  

I have said before that I wish, wish, wish I had the power to make things easier for Sammie B.  I’d give up a limb or organ to make it so.   But I can’t.  And honestly, that part is heartbreaking.  The part where I watch my girl work so stinking hard to do what comes so easily to her peers -- that part, we have dealt with for awhile, but this new thing . . . watching as she realizes and processes how hard things are for her -- watching as she watches her little sister do those same things with ease and she gets frustrated because she just wants things to come easily to her --  seeing how her frustration is mounting -- this is what is just tearing me to pieces.

We can’t make things “easy,” we can’t make it so that the “easy” to others is “easy” to her.  So instead, we think, we ruminate, we research, and we lean on the experts in our lives to think of how we can at least make them easier for her,  We talk to her about how even though some things are hard, we don’t give up and sometimes, we have to just find different ways of doing them.

And, as is sort of typical of my thinking process and how things work in this journey for me, as I research things and think through things quietly, often staying up late to read about a new therapist or therapy or email our amazing physicians to get their thoughts or schedule an appointment with her orthopedist to check in and get his thoughts too . . . It is always after a long period of doing those things that it is as if my heart just speaks to me when it is the right “season” for change.  And, then, I go to B with all the ideas that have been swimming in my head, we research some more, we keep talking to the experts in our lives and Sammie B’s life, we tweak therapies or therapists, we freshen things up and try new things and we keep on, keeping on.   You know what?  It is exhausting.  But she is so, so worth it.  So worth it. 

Some of the changes are little, others bigger, but we do it - we keep on keeping on.   We tweak therapies, schedules, equipment, all to find the right balance for this “season” in her life and ours. 

As a small change, I went to Target over the weekend and stocked up on cheap princess trinkets for a treasure chest.  And, this morning, we had a heart to heart where I told her that as long as she worked hard in PT, she’d get a surprise after, and so, we’ll see.  We’d done that for a long time right around the time she turned three, but she really had gotten to where she just worked and had fun with her therapists, and I’d spent what felt like 8 trillion dollars on little trinkets that were strewn about our house and car and in every crack and crevice of our lives, and so we backed off.   But, ‘tis the season again for bribery.   Frankly, the little lady works so hard that she deserves a million little trinkets.  

We are also trying to be diligent again in having some alone time with each girl every weekend, where either me or B has Mia and the other has Sammie and we just spent some one:one time with them.  Where Sammie B can play with one of her games with one of us without Mia swiping pieces, where we can sit and read with Mia or go out for a walk and let her wonder about . . . . that too has fallen by the wayside as I have had to work weekends (particularly in December when I was not getting much work done during the week days) and while we were getting the house ready to sell.  We know they each need and deserve that alone time so, so much.  Sammie B and I kicked off this weekend with mama-Sammie time (pedicures!) while B and Mia went out to breakfast and for a walk.  

We also tried our first CME (Cuevas Medek Exercises) therapy session.  This is one of the things I have read about for years, but listened to our original PT (mistake) and never tried (remember, she’s the one that was adamantly opposed to gait trainers too).  But lately, I came back around to it in my head when I learned of a clinic so close to our house with CME practitioners.  Another mom from my delayed darlings board started doing this therapy with her child and said great things, a friend from Sam’s early intervention program was doing it, we went to see a session, and I was blown away.  So, we tried it.  And, I liked it.  It is hard.  I could tell that Sammie B was working so, so hard, and I was blown away by her.  And what she was able to do with the facilitation of the CME therapist.  She’s a kid that generally does well when she knows exactly what is expected of her in advance, and we’d talked about how she’d do a few of each exercise and we told her how many she had left each time, and her determination was unbreakable until just at the very end when she was ready to be done (and earn her new princess dress we’d bought earlier that morning!)

Unfortunately, B had a work emergency and could not make it to that appointment, but we have another one scheduled for later this month, and if all goes as it did last week, we will likely be doing a CME intensive session this summer (with some additional other types of therapies thrown into the intensive).   It makes me nervous -- CME is not a therapy that can really be done in a way that makes it particularly fun for the kiddo -- it really is like exercising (and the therapists say they will keep going even if the child is crying and not cooperating, which is not how we roll, and something I likely won’t compromise on), but I’m cautiously optimistic that we’d be able to push through with the help of an iPad and Dora and some breaks in between the work. This clinic is also less than five miles from our house, so that's also a bonus.     

The more we learn about Sammie B as we go through this journey -- that her challenge is primarily her balance, and is cerebellar in origin, and the more we learn about what that means -- the more these other therapies make sense to me.  We can do traditional PT until we are all blue in the face, but that is working on strength and showing Sammie how to move her body, and she knows and understands what we want her to do.  But her brain isn’t wired to do it. . . . not in the way that a typically-developing brain is.  So, with that understanding, the more we are convinced that we have to try some of these other therapies (like CME and a few others we are researching and spinning our wheels over) in conjunction with some traditional PT as well. . . because we know --science has shown -- that the brain is plastic.  That it can be “rewired.”   The two best neurologists we have seen -- both the one specializing in movement and cerebellar disorders and the neuro-ophthamologist whose had my trust since the beginning of this journey -- keep emphasizing this to us -- the idea of neuroplasticity.   Science has shown that kids can be missing their cerebellums completely and that the other parts of their brain can be “rewired” to compensate.  It’s all so fascinating and promising.  As I told the new CME therapist, though, I am not looking for a magic solution.  I will not put my child through anything that remotely feels like boot camp in hopes of her walking.  Yes, the world is more convenient for walkers, and I’d LOVE for her to know that convenience and ease. . . but at the same time, my goal here -- our goal -- is just to help her be her best self, whatever her ultimate form of mobility is.  With that back drop, we move forward in trying new things, mixing new things in with our more traditional PT, and just keep plugging on.  Cautiously and optimistically. 

We also have an assessment coming up in April for a power chair.  To see if Sammie B could drive one.   (Yes, a four-year-old little bee, driving, and I have learned these things are NOT easy to maneuver, so it may be too soon, but we shall try).  We have tossed this idea around with her PTs for a long time.  We know she can *sort of* drive because she does pretty darn well in her little power car as long as we are giving a little bit of direction (you know like, “don’t drive into the wall!” . . . though she does, but only because she thinks that’s hilarious . . . ).   We spent the last year focusing on progress in the gait trainer, and she's made it (and continues to).  She has made much, much progress in her ability to move around in our house.  She’s started scooting all over, getting herself safely from the couch to the floor to scoot, etc., which is incredible.  We know that her ability to do all of those things is only going to continue to improve.  But right now right where we are, those two forms of mobility are simply not practical ways for her to move about in the community -- she still goes just short distances in her gait trainer -- and we don’t want every ounce of her energy being spent getting from point A to point B.  I think of a day at Disneyland, and I *know* that a gait trainer (or even walker) would not be practical in that sea of thousands of people.  So, for the last year, even though we have made tremendous gains in the gait trainer and at-home mobility, we still push (in her stroller), pull (in our awesome wagon) and carry her out in the community.  

A very long time ago, I read a blog post by a mom about her little boy getting a wheelchair.  I honestly don’t remember where it was or I’d link it for you.  But, one of the commenters, an adult in a wheelchair, said, “when a stroller is no longer age-appropriate, he needs a wheelchair, so his peers see him as just that . . . a peer.”   That really stuck with me.  And, so I have spent the last year sort of thinking and processing and ruminating . . . through the logistical (selling our house with its four flights of stairs, converting our van, which you would NOT believe the cost of -- we still have to figure that one out -- an expense for which there is no help -- one that isn't covered by insurance, even though it is, no doubt, a medial one) as well as the emotional.

I am determined that even though all of *this*is hard for me, I never, ever, ever want her to feel like I attach anything but positive to her chair - if she winds up with one.   If that winds up being her primary form of mobility.  It does not matter.  Yes, I know this world is built for walkers.  I am reminded of it every time I leave the house and struggle to hold a door open as I also push my stroller or wagon, or every time we go to look at a house for rent that was advertised as a “single-level” but has a step down or up somewhere in the interior . . . reminded of it.  And we want our girl to know “easy.”  So, yes, walking would be nice.  Convenient.  For her.  But if that’s not to be, that’s not to be.  Our goal for her is for her to be her very best self.   To reveal that very best self to the world -- to reveal her destiny -- as only she can.  

Anyway, as all of this was ruminating in my head, as B and I talked about selling the house, put the plans into action, etc. there was a day that my heart just spoke to me . . . and I knew . . . it was time. 

During that month of working from home when we were without childcare, I took Sammie B to school and picked her up every day.  Pulled her into the classroom in her wagon, helped her walk over to her seat, and then left the wagon outside for pick-up time.  At pick-up, all the kids sit on a bench, and the teacher/assistant walks each, one by one, out to the gate to their parent or whoever is picking them up.  Sammie B was sitting on the bench and spotted me and kept yelling, “MY MOMMY IS HERE!” but they brought all the mobile kids before loading her into her wagon and bringing her to me.  I knew in that instant, that if my girl had a power chair, she’d have zipped over to me in an instant.  And, I knew.  She needed that.  For her. 

I realize that a power chair will be a STEEP STEEP learning curve.  We may go for the assessment and them tell us “not yet.”   But we have to give her this chance, whether now or later.   (And, if she does not yet have the maturity required for the power chair, we’ll likely get her a sport chair/manual chair because we know from how she uses the Kidwalk that she could propel that with her arms for short distances).  We have to give her this chance.  At independent mobility.

This does not mean we give up on other forms of mobility.  At continuing to progress with the gait trainer.  At trying walkers out down the road.  At hoping -- for her -- that one day she is able to walk independently.  But it does mean that, right now, we want to give Sammie B every chance we can at independent mobility.  At lessening her frustration, at interacting with her peers in an age-appropriate way.  

Now, I will be honest.   On the day that I finally said to her PT, “let’s start the (long) process of getting a power chair,” after the appointment, I sat with Sammie B to have a snack before heading to our car, and I put my big sunglasses on so that she would not see the tears forming in my eyes (just as they are right now) while I processed it all.  I just wish things were easier.  For her

But as I sat there, texting my sweet friend H, who is almost always that friend, Sammie B had managed to take both shoes and both socks off, and put one sock on her hand.  I had not noticed until she said, “can you please put my other sock on my left hand?”  Stopped in my tracks, I realized . . . how did she know left and right?   That little girl is magic.  And, even though my heart is hurting and my mind is literally reeling from everything that is going on, she heals me, in her most magical way, every single day.  

And that night, as I checked into my twitter account, which I so rarely do these days, I saw the following quote, retweeted by some CP organization I follow:

“I am not trapped in a wheelchair, I am liberated by it.”
[Source unknown, but whoever you are, I am so, so grateful for those words.]

We cannot give her “easy,” but what we can do is teach her, by example . . . . to help her understand her body, to help her understand and process the differences and her challenges.  To hopefully hopefully start instilling in her an inner voice of love and pride.  To make sure we give her every shot at independence, no matter what equipment or adaptations that requires.  And, just to love her to bits while she processes it all. 

Here’s to you, Sammie B.  Know this, my girl, you amaze me and inspire me every single day.   Nothing about you, nothing, disappoints me.  If you need some wheels to get around, so be it my girl.  You will rock those wheels.  Just like you have rocked everything else you touch.   I am so, so proud of you and I love you more than you could ever know.  Just as you are.  Perfectly Sammie B.  I am so, so lucky to be your mama.  You are determination, grace and perseverance defined.  You are mine.  And for that, I count my blessings every single day.   

Thursday, March 7, 2013

Rewind Wednesday

I'm not "rewinding" too far on this one - just to a couple weeks ago, actually.

I've mentioned before that I've met some amazing mamas in a few different online support boards for moms of kiddos with special needs.  Moms, friends, that I would have never met but for this journey.  Women who started off as anonymous commenters on posts, who answered and asked questions, who shared resources.  Along the way, though, some of them became friends.  First it was the message board, then we became Facebook "friends," soon we realized we truly had a lot in common and it was quicker to text thoughts/comments/questions throughout the day than to log onto the board or Facebook. . . . friends who I could text in the midst of a moment of worry, of wonder, of "why my girl?!" friends who I could text in a moment of "ohmygodshe'sdoingit," friends who just get it, like no one else can.  Friends.

And, along the way, I've been fortunate enough to meet some of them in person.  Like this one:

(Isn't she the prettiest? Yes.  She is.)

Met up with Erica for drinks and dinner when I traveled to San Francisco for work two weeks ago, and just as I knew we would, we sat and chatted like friends who'd known each other forever.  Not an awkward silence (or any silence) to be had, never missing a beat.  

This road we are on -- this special needs road -  has its ups and its downs, and twists and turns.

I'm blessed beyond measure to be navigating it alongside so many amazing mamas who really, truly have become my friends.   Like this one. 

[And stay tuned, coming up soon, a post titled something other than "Rewind Wednesday,"  . . . how is it already Wednesday again?]