Learning to See

Hi sweet friends.  I'm alive.  We are adjusting.  Life (or three kids, rather) is busy.  I've had computer probs.  I know I'm neglecting the blog, but I'm trying!  I have sat down no less than 5 times to begin writing a post in the last few weeks, only to be called back on duty moments later.  So bear with me friends!  And a big thanks to PBS Kids for occupying Calvin long enough for me to crank this out, not to mention a rogue daytime nap for Turner...Hallelujah!

Apologies aside, I wanted to share with you about Elena's recent assessment by her vision specialist.  As you may remember, we have travelled to Pittsburgh several times in the last few years to see a doctor who is the best of the best on Elena's vision impairment, (Cortical Vision Impairment) CVI.

A quick, simple refresher on CVI:  People who have CVI can physically see, meaning the eyes (structures all intact) bring in the visual input, but the brain has difficulty interpreting this input.  Simply put, the eyes see, the brain has trouble telling you what you're seeing.  Therefore, we have to "teach" Elena's brain what she is seeing.

We hadn't been in a couple years.  With Elena starting Kindergarten and working on a communication device, we decided we needed to make time for a visit even with all that we have had going on the last few months.  And man, are these appointments ever worth it!  We always leave inspired, educated and honestly, emotional.

She assessed Elena's vision and noted some improvement from last time, which is great.  Elena still has a lot to work on, however.  To achieve more progress in her vision, she needs to accomplish some things that are pretty difficult for her.  It's all very complicated to explain, but we have great hope for her!  The best thing about these doctor appointments is that we leave with instructions on how to help Elena and what we can do to help her improve her vision.  We will be busy integrating these at a school and at home.  Just more to do :)

In leaving this latest appointment, I had a bit of an "Aha! Moment".  After all this time educating myself on Elena's vision impairment over the last five years, it had never occurred to me that Elena's visual world would never look like mine. (This likely should have been obvious.)  I always had in my mind that our efforts to "improve" Elena's vision was so that ultimately she could see the way that I see, which in hindsight seems so silly. For whatever reason in that appointment it clicked that all our efforts, all the hours of therapy, are to give Elena the tools to navigate HER world, not mine.  Sitting there, my mind reeled, processing that thought.  At that realization, I almost felt ashamed that I was just now figuring that out and had wanted her to experience life the way that I do.  Elena will never physically see the way that I do, or Chad does or her brothers do.  Her world will always look different as a result of her impairment, but what she needs from me is for my focus to be about teaching her what she does see and giving her the tools to interpret it.

Am I making sense?  I realize my sleep deprived thought processes can get a little jumbled these days!  For example, we're teaching/working on helping Elena to walk. (She's doing awesome, by the way!)  Now, it's pretty obvious that Elena will never walk like me, but she'll be walking no less.  It's the same with her vision.  We know at what level she can see.  We have hope that she will continue to make progress in interpreting what she sees, but what/how she sees things will never look the same as me.  She will always have to work at deciphering her visual world.  Whew, got that?! 

One of the blessings of having a child with special needs is all the perspective it gives you, and sometimes a new one pops up out of nowhere, like it did for me last week.  God made us all with different perspectives, outlooks, gifts and abilities.  Instead of always getting others to see, feel and do the same as us, wouldn't it do us all better to try and see OTHER perspectives and respect those, even if you find them totally unrelatable?  Sometimes it helps to get out of our own head, remove our own pride and selfishness and appreciate our differences.  At that moment in the doctor's office, I was so proud of Elena, how hard she works, all her gifts and what she teaches me every day.  I'm thankful to learn about her world, how she sees and interprets it.  It's totally foreign to me, but it teaches me so much.  There is so much VALUE in that.  

I'm so encouraged in this moment.  I have so much hope that we will be able to help Elena "see" her world.  I have so much hope in Elena's physical, cognitive and communicative abilities and all the progress we've seen her make.  I'll be honest, a lot of times it can be really difficult living our reality or even facing our reality, but a lot of times simply loving and accepting Elena the way she is, is just so darn beautiful and rewarding.  God continues to use her to stretch me, open my heart and teach me things I didn't know I needed to be taught.  I've said it before, Elena is joy.  And come on, you have to appreciate the irony of me "seeing" all this at an appointment where a doctor is teaching us to help Elena "see"!  You can't say that God doesn't have a sense of humor!   

How Are We Doing?

You guys, I'm alive.  I may be in survival mode, but we all are alive.  The past three weeks have been, um, challenging.  There has been SO MUCH GOING ON (I feel the need to all caps this to prove the level of chaos) that literally only one sliver of a nostril is the only thing keeping me from drowning in the waters of this thing called life, currently.  So, yeah, three kids is HARD.

Ahhh, I have really enjoyed reminiscing about the ease that was only having one child (or two for that matter) the last few weeks, which obviously was the hardest.thing.ever. at the time.  Now, I know hard.  I've cried the last couple nights to Chad (who has been so full of grace for me and my hormonal-emotional, happy-one-minute-screaming-the-next state) that I'm giving myself a big, fat "F" for all things Momming of three Hinton children.  He, understanding my fragile state, wisely told me I was being too hard on myself, but I secretly think he agrees.

For starters, Elena has had a bit of a rough start to school.  Not her per se, she's loving every second, but we have had a bit of a struggle understanding her day and making sure her time between Kindergarten and Life Skills is benefiting her the most.  I have been fretting over this for weeks.  Then there's all her therapies, which as her self-proclaimed Therapy Guru, I am failing miserably.  I have ALWAYS been on top of everything, leading the charge, making sure everyone is on the same page and pushing her.  Well, I'm just not.  Then there's her need for some new equipment, some upcoming doctor appointments, and coordinating all of it is quite time consuming.

Then there's our always easy-going, sweet as can be, Calvin.  In the midst of potty training, bringing home a new family member, and (just today) falling out of his crib in the throes of a naptime fight (which literally has NEVER happened before), is testing whatever fumes are left in my patience tank.  He's two, and there's obviously some changes around here, but woah Mama.  Did you guys know it's nearly impossible to explain/rationalize/use common sense with a two year old?  Turns out, they don't care.  I'm hoping it's one of those "planting the seeds" metaphors, and that any day all our rules, pep talks and life lessons will sprout him into a blossoming 2 1/2 year old?  No?  Yeah, probably not.  F.

And then there's Turner, who is a newborn.  Besides keeping me up every 2.5-3 hours at night, wanting to be held all the time (in constant motion), and grunting/farting around the clock, he is pretty easy.  The problem is you throw a five year old, a two year old, and about 1,439 simultaneous life issues occurring at the same time into the mix, things can seem quite um,........overwhelming?!

So there you have it folks, the long answer to the question everyone asks a new mother.

"How are you guys doing?"

and my obviously reply,

"Oh good, just trying to find our groove." SEE ABOVE FOR WHAT I REALLY MEAN.

But really, I mean all that. Ha!  It's definitely a tough adjustment.  We DO have a lot going on, most of it, just poor timing...it all happening all at once.  I'm just not one for facades.  And I'm sorry to any of you about to have a third child or contemplating a third child, I'm sure yours will be different :)

Just like everything though, I know it's a season.  And even though this particular season has me drowning a bit, and maybe crying every day, we'll survive.  Our "groove" is coming.  We have much to be thankful for, as always.  Even though it can be isolating, I know I'm not the first Mom to walk this road.  I keep chugging the caffeine, praying for patience, and wine, there's always wine.


**On a different note:  I am, somewhat frantically, looking for help with the kids before Gramma Frey leaves us for the winter (ahhhhhh, no!!!).  I need help with getting Elena to the Jackson Center on Mondays from 11:30-4:30 and with the boys on Tuesdays from 2:30-5:30.  A college student (education, nursing, therapy, etc) would be ideal but not required.  If you know of anyone who may be able to help, please let me know.  Thanks friends!

Welcome Baby!

I'm incredibly sleep deprived so bear with me if this seems a little all over the place.  But I have a spare couple minutes and wanted to share with you all that we welcomed our perfect, little baby last week.  

Let me introduce to you, Turner William Hinton.  He was born last Wednesday, August 17th at 2:30pm.  He was 8lbs 13oz and 21in of total cuteness.  Everyone is healthy but all desperately need sleep!  

Elena and Calvin were so excited to meet their new baby brother.  Calvin was all giggles meeting Turner, Elena a little more subdued.  But for good reason.  Elena came down with a stomach bug Wednesday night (great timing, right?) and was so, so sick that night and all day Thursday.  Gramma Frey took good care of her and we are all so thankful that she seems to be the only one who got the bug.  

We are all adjusting to life as a family of five.  Our days have been fairly routine but our nights have been much more lively with little Turner.  He is quickly reminding Chad and me what life is like with a newborn.  Funny, how quickly you forget the power of sleep deprivation!  Elena, thank goodness, has been sleeping much better....not sure we could handle soothing two little ones all night long.  

Today, Elena is back at school and Cal is at preschool....which means Turner and I are going to go take a nap!  I can't think anymore!

First Day Recap

Elena had a great first day of school!  Her bus was right on time.  Her outfit was adorable.  And Mom remembered everything needed to send!

It was a success until 2:30 when she was to get on the bus to go home.  I got the dreaded call from the teacher and I already knew.....she barfed.  Right before walking out to the bus, Elena threw up.  So, I headed over to the school to pick her up.  I felt terrible for her teachers and aides who had to clean up barf on the first day of school.

Her report for the day was great though.  She had fun, no tears and everything else went smoothly.

I did ok too!  Of course there were tears when I saw how big and adorable she looked in her first day outfit.  And when I wheeled her down to the bus.  And when she got on the bus.  And when the bus pulled out of the cul-de-sac.  And as I walked back into the house with just Calvin.  BUT!  I survived.  The phone was glued to my hip all day but I survived.

Now if we can just get through day 2 without any puke (at school)!

Anniversary, SCHOOL & Surgery update

Today is back to reality.  Not that the last four weeks haven't been reality, oh they've been real all right.  But today starts us back into our new routine.  Elena goes back the Jackson Center for therapies and tomorrow, gulp, she starts school.

Not only that, but today is Chad's and my 7th anniversary!  I was recently going back through some wedding pictures to switch out some frames here at home and gosh, looking at us SEVEN years ago, we were just babies.  So much life has happened in just seven years.  I just kept thinking how lucky, fortunate, blessed that I've done it all with Chad as my partner.  Marriage is a funny thing.  I'm certainly no expert....at ALL....but when I think back to our actual wedding day, it's such a blip in time.  It's funny that's what a girl dreams about, not the everything that comes after.  And as momentous as that day is, it's the life that happens afterwards that matters.  I knew I loved Chad with all my heart that day in August 2009, but I never could have known the partnership we would build together.  I never dreamed of the deep friendship, constant support of one another or how our love and respect of each other would deepen with time and life.  I'm thankful for him every day.  And man, what a life we are building together.  We are SO blessed!

And here we are about to welcome our third child (ahhh!).  I'm so (so, so, so, so, so) ready to be done being pregnant.  I love what a miracle it is, but man, is it hard on my body.  I'm so uncomfortable I can't even remember what it was like to feel good anymore.  I've done my best to stay healthy, working out all the way through 35 weeks, being active, but I'm hurting!  It officially feels like I've been pregnant for a hundred years and I have the body of an 80 year old.  So, needless to say, baby, I'm ready to meet you!

Then, there's my baby starting KINDERGARTEN tomorrow.  I mean, what?  I don't even feel like I've been able to process this.  I have a feeling I'll get her on the bus tomorrow and cry until 2:30 when she gets home.  I'm so excited for this step in her life.  It's going to give her such freedom and opportunity, but I, of course, just want to keep her all to myself forever and ever. That being said, she's going to do great.  Much better than me, but knowing my girl....this is going to be her time to shine.

This life milestone for her isn't without those familiar twinges of pain, however.  The reality of it is, she won't come bounding down off the bus, running to tell me all about her first day of school.  The friends she met, the things they did, who she sat with at lunch, who she played with at recess, all of that will be missing tomorrow.  For me, reading through the school supply list is even hard.  Markers, crayons, scissors, glue bottles...all items Elena can't use by herself, for a classroom she will have limited time in.  Elena will have two teachers, two classes, a Life Skills class and a regular curriculum class.  I know it's the best fit for her but just the word "Life Skills" is hard to say sometimes.   I've been intently praying for both her teachers, and especially her peers.  Peers are hard.  As she gets older, kids become just a little harsher, a little less interested in her, all of which is heart breaking.  There's been several times lately where I notice kids her age just staring at her.  And I know their little hearts and minds are innocent, but my heart wants them to being staring at her because my Elena is stunningly beautiful, not that she's "different".  I know how much she loves peer interaction and it breaks my heart at the thought of her being left out, being ignored or the worst, being stared at.  Oh my heart.

Yes, this will all be bittersweet.  There are crazy emotions swirling around (and crazy hormones, ya'll!).  Mama fears are real and hard and come at random times.  But, at the heart of it all there's God just whispering to my heart to "Be Still" and just like every other hurdle before this, He is in control.  His plan is bigger, better and more beautiful than my silly fears and anxieties.  The next few days and weeks will be a roller coaster, my goodness.

And to totally change the mood here to close out, I should probably update all you sweet people out there who have been praying for our girl and her trusty new hip!  She's doing great, making great strides in PT in the last week.  Her pain and sensitivity is decreasing, as she is getting back to her normal, happy, easy-going self.  We've struggled several nights in the last couple weeks...like struugggggggggled.  Like, please give me a newborn who will no doubt sleep better than my five year old right now.  But, it's hard to say if it's behavioral or hip related.  All I know is that I'm sleeping terribly in my last few weeks of pregnancy, coupled with a five year old who is up literally all night, making me sleep deprived, before I'm going to be sleep deprived....Lord help me!  She gets some follow-up xrays tomorrow that will give us a better idea of how she's healing.  I'll keep you all posted.....and of course, share with you her FIRST DAY OF SCHOOL PICTURE!

Love you all for your prayers and support! xo

The Home Stretch

Hard to believe it's been two weeks since my last update.  It's bizarre, the weeks have flown by but the days have been L-O-N-G.  Our calendar, for the most part, has been clear, which is weird.  In the last five years, that's never been the case.  So, I guess it's nice to take a breather and not to be hustling to get out the door every day, all day.  But, it has made for some difficult days.  Like never-ending, what seem like 40 hour days.  However, this scenario is not likely to happen again, oh, for the next 15 years so I guess I won't complain too much.

Elena has been doing really well.  She has definitely had some good days and some bad days, but in the last week, it's becoming evident that she's on the mend finally.  She's happier, more interactive, less tired and can be moved around a lot easier.  We've been fighting some major reflux issues for whatever reason, but that's been the worst of it lately.  That, and the nights.  We get a good night (two or less wakes) about every four terrible (awake every 30 minutes) nights.  I mean a newborn may be easier than Elena has been at this point!  It's hard to figure out with Elena if it's reflux, her leg, or just wanting to make sure Mom and Dad stay close.  I tend to ALWAYS think it's the latter, but Daddy (whom Elena has wrapped tightly around his little finger!), usually disagrees with me, shocking I know!  This happened with the last surgery.  She got used to us running to her with every little peep and kept up that routine for like a year until something that I can't remember that we did to fix it.  I'm really looking forward to being awake all night for the next infinity.  Maybe the newborn will be like Cal and win all awards, ever, for sleeping?  Please?  God, help us!

Now that we are emerging from the post-surgery survival mode, I'm beginning to feel the anxieties of the beginning of the school year arising.  It's reallllllllllly scary sending your five year old to Kindergarten, especially with all the needs and accommodations that come with Elena.  The whole process is a lesson in lack of control, which of course, I hate.

Oh yeah, then I'm having a baby sometime in the next four weeks.  So there's that.  I do have the car seat washed, a set of white onesies set aside, newborn diapers ordered from Amazon and three swaddle blankets on the ready which means I'm pretty much ready.  It's hilariously opposite from the preparations of a first (or even second) time parent.  Poor third child.  I can say that because I am one.  I promise we'll figure out a name for him/her but for now, there's A LOT to do.

I do want to thank all of you who have been so thoughtful and kind to us the last couple weeks.  The meals, the prayers, the texts, the encouragement has all meant so much.  It has definitely made the surgery awful-ness, much more doable.  

Home

We're home.

We got home last night about 8pm and I don't think I've ever been happier to be here.  My shower, my couch, my bed....Calvin!  We left the hospital yesterday morning at 9am and drove straight through.  Elena was the champ.  She never fussed one time.  We stopped twice to get her out, change diapers/dressings and move her leg around, popped her back in the car and off we went.  We have been amazed at how well she has done thus far.  Riding in a car seat 72 hours after a major orthopedic operation for 11 hours is unimaginable to me, but it was nothing for her...Chad and I complained more than she did!

Last night she woke up just once (hallelujah!) so we were all pretty darn well rested this morning.  We've been able to manage her pain with just Tylenol and overall, she's doing really well.  Granted, she's still "off", lethargic, painful to move around, her digestive system is a little awry and her little body is bruised and swollen but she is doing so much better than last time. And we are SO thankful.

We are so appreciative of all the messages, texts, prayers, meals and love we have received.  It has been such an encouragement to us.  It's definitely a crazy (and I mean cuh-ray-zeeeeee) season in our life but our support network has been amazing, and we are thankful for each one of you.

The last month of our lives has been so beautifully orchestrated.  Everything came together fairly easily for this all to happen and I totally recognize the blessing that is Dr. Nuzzo.  He was worth the trip all the way to New Jersey a hundred times over.  The fact that we were able to have an alternative to what 99.9% of orthopedic doctors would do to our little girl (that literally has a 100% failure rate over time and an up to 2 year recovery) makes all the difference.  We are so fortunate to have had the opportunity for him to fix our precious girl.  That being said, we won't stop praying that this was the LAST orthopedic surgery she'll have to face for a long, long time, if not ever.

For now, we'll be hunkered down here at home, enjoying a freed-up summer schedule with the sweetest little patient and adorable 2 year old.  That, and waiting for this other little babe to make his or her arrival AND give me that looooooong over due glass (or bottle) of wine. Cheers!

Here's Elena yesterday on our ride home, happy as can be!