Sharing The Journey

I've had the privilege of connecting with some other families in the area who are raising children with special needs, many of them similar to Luke's challenges. When I say "connect" I mean mostly, chat on Facebook or over the phone or on our blog sites. Most of them, I hadn't yet been able to even meet in person.

Tonight I got to hang out with this...may I say...EXCEPTIONAL group of moms. Wow. What a great evening!!

It's always an amazing feeling when you can rest in the company of someone who walks your same journey.

Growing up as a missionary kid, I had some great friends. Some American. Some Italian. Some international friends from just about everywhere! There was nothing quite like hanging out with another missionary kid though. I can remember so clearly how freeing and :::sigh::: just 'burden-lifting' it was to be with another kid who was living my reality. I could relax. Let my guard down. I could finally stop answering stupid questions like "So what language do you guys speak in Italy?" and have a real conversation instead. I could just BE. Be myself and not have to explain this crazy (yet very enjoyable!) life that I was living.

When I entered my teaching career, I realized again how wonderful it is to have friends who just know. There's nothing like a fellow teacher friend. She understands that your work day doesn't end at 3:30. She knows that the stack of papers to grade never goes away. She, more than anyone else, knows that teaching isn't about just passing along information, but figuring out how each child learns and that's NOT an easy task. Fellow colleagues understand the complete exhaustion that comes along with teaching elementary children. The challenges, the frustrations, the inexplicable JOYS of teaching that keep you coming back year after year.

And now, once again, I'm finding myself resting in the presence of moms who just know. That's it....they just get it. There's no need for explanation. What bliss!! I guess I didn't realize how much time you spend e-x-p-l-a-i-n-ing when you're the mother of a special needs child. It's all for good....family and friends want to get inside your world.....doctors and nurses and therapists all need to know nitty-gritty details. Strangers and passer-byers will always have their questions and comments. It's not that any of this is bad. I'm so thankful for such a supportive community who WANTS to be a part. It's just...well, work. Sometimes, it feels like so much work. But not tonight. Tonight was just one special-needs mommy in the presence of another. No need to explain a diagnosis...or therapy regimens, or medications, or progress, or lack of progress. These are moms who understand the fears that come along with raising a child with so many needs.....who understand the work load, the worries, the frustrations. They Just Know. They know what it's like to go to bed feeling guilty that maybe you didn't do enough today. That's the question that always haunts us. Enough. Did I do enough today to help him be all that he can be? Have I researched enough? Are we doing enough therapy? Am I doing this whole thing RIGHT? These moms know that old friend, Grief, that comes around every now and then. Though time (and Jesus!) makes things better, there will always be that grief for what could have been. The grief you feel when you look at your weekly schedule and wish your son could just be a regular 'ol kid doing regular 'ol kid stuff instead of hours of therapy and doctor's visits. They're the moms that know what a miracle is. I'm talking about the everyday miracles. Not walking on water miracles. The other ones that most mommies miss. These are ladies that understand what it's like to be so overwhelmed at times at the task set in front of us. But, like me, they wouldn't trade it for the world. Cause these special kiddos are teaching us more about life, more about love, more about God than we even dreamed possible.

And when you meet another mommy who is on this same sort of journey, there is nothing quite like it.

P.S. If you are a parent of special needs child and have happened upon this post, I encourage you to check out exceptionalfamilytv.com. You will find weekly episodes featuring families around the nation raising kids with special needs and a whole host of resources available to you. I think you'll find it very encouraging to connect with others who walk this same road.

Do You Hear What I Hear?

F-i-n-a-l-l-y got into an ENT about three weeks ago. My suspicion was correct and about 5 seconds after the doc looked in Luke's ears, he said, "Oh, we need some tubes in there!" I was one happy mamma. If he hadn't recommended tubes, I had plans to persuade him in that direction. :))

Luke failed the hearing test in both ears. Actually, both ears have so much fluid that neither ear drum is moving at all. Thankfully, this hearing loss should all be resolved once we drain those suckers TOMORROW. Surgery time is bright and early in the morning, which we are totally fine with since most 21 month olds aren't too keen on pre-surgery fasting. ;)

Will keep you updated on how things go. This is surgery #6 for Luke, so I'm actually feeling pretty calm about this whole process. (Is it terrible that surgery is old hat to us?! Ha!) I'm just thrilled for him to finally get some relief. And with his vision already being limited, having normal hearing again will, I'm sure, be music to his ears. :smile:

Now You're Talking

I'm not a big talker by nature. Perhaps it all goes back to the beginning, when my big sis felt it was her obligation to answer for me.....all the time.

"What's your name?" "Her name is Kristi."

"How old are you?" "She's three."

Before I could even start to answer, my sister was ready to talk on my behalf. :)) Although, I'm pretty sure even without a talkative, big sis I never would have turned out to be a chatty cathy.

But, along came Luke and his visual impairment and those are now my instructions. Talk. Talk. Talk. Talk so much that you should be tired of talking by the end of the day. Describe in detail everything going on around him. Every sound. Every movement. Every object. Every smell. Every texture. I didn't realize how hard it would be for me to do this!!! Of course, with every small child, you should be chatting constantly, to expand vocabulary and build a strong foundation for healthy communication skills. But this is different....more like a running commentary. All.Day.Long.

I think I mentioned on here before that a local school, Drury University is staring a children's center for the visually impaired. Thank the Lord!! Cause quite honestly, services for blind/VI children ages 0-3 was pretty lousy around here before this amazing program started.

We've learned so much already. Luke recently had a Functional Visual Assessment (FVA). As you can imagine, it's not easy to figure out exactly what an infant can see. No chart reading here! There are generalities like "legally blind", but that doesn't really help you interact with your child. But an FVA can give you a pretty good idea of exactly what your child can and cannot see. With the skillful observations of a trained teacher of the visually impaired, you can learn all kinds of things!!

What we've learned has been encouraging and discouraging all at once. The less exciting news is that Luke doesn't really see a whole lot. Honestly, I thought he was seeing more than he actually is. We've learned his left field of vision is his best functional vision. We've learned he has more than just light perception. He sees bright colors and large objects. He is seeing something, he's just not seeing it well enough to really learn from it, if that makes sense. 85% of what infants learn is through visual processing. Since we have Caleb who is a typically developing child, we observe first hand just how MUCH babies rely on vision for information. Caleb is constantly watching and mimicking our actions. He hears a new sound and he turns to find what is making that sound. He picks up objects and waits for us to tell him what it is, so that he can repeat the word and add it to his vocabulary. He looks at books and points at pictures and again waits for us to tell him what he is seeing. Even language development depends on vision. As we say the words, I see Caleb looking intently at my mouth to see just how I'm able to make each sound. Then he copies it. Soooo much learning early on in life is done with visual processing.

Visually impaired children don't have that advantage.

It shouldn't have been a big surprise then when the told us visually impaired children are, on average, 6 months behind schedule. That's without any other "issues". Right off the top, 6 months delayed.

So that's where all this talking comes into play. We have to be his eyes and help him explore his world by TELLING him what's around him. What he hears. What he feels. What he tastes. Where we're going. What we're doing. Etc. Etc.

The encouraging part of the assessment was just simply that Luke is already adapting quite well. (which is why we thought he was seeing more than he actually is). He's already learning how to use his other 4 senses to gain information about the world around him.

He's much more aware than he's ever been. He's reaching out for things more. He's less agitated and more comfortable in his surroundings.

We're so thankful for the services he's receiving and all the help we are getting as parents. More updates to come this week.....

For now though, I'm off to do some talking with Luke. :) It's only midday and I'm already tired. I SO don't have the gift of gab!

I've been tagged

A friend from my high school, Diane (Long) House tagged me, so guess I'm "It". :)

Background: Diane and I went to the same high school in Valley Center, KS. I grew up in two places....Valley Center, KS (population 6,000...?) and Rome, Italy (population 5 million). Pretty much my life was interesting right from the start. Ha! You couldn't get more different than Valley Center and Rome. Complety different worlds. But, as the Lord would have it, our missionary lives offered us just that.....living somewhere in between eating at Burger Hut and driving by the Coliseum so many times you barely glance out the window to look at it. Anyway, after...oh gosh....TEN years, we went back to Valley Center about three weeks ago. Andrew had never seen this part of my life, so it was pretty neat to show him my high school, the houses we lived in, our church and all the places that were a part of my childhood. It was a great visit!! Strange in some ways. It's just weird to be gone for so long and then revisit all the places that at one time were your life. We got to see lots of old friends while we were there....the kind of friends that you can just start having a conversation with...as if you had just talked with them last week, when in fact it's been years since you've talked. That's a pretty great feeling.

And thanks to Facebook and email and blogs.....you can so easily keep up with everyone now!

That's how Diane and I reconnected.....and we found that though years and distance have separated us, we share a lot in common. We're both mommies of twin boys. We both have a son named Luke. We both like to to blog!

So, back to the game.

Tag and I'm It. Here goes it....



1. What's my staple meal?

Well, we always have sourdough starter in our fridge (that's been in the (Andrew's) family for years and years). So, we can always do sourdough pancakes! Omlets. Stir fry. Those are the basics we usually fall back on if nothing else is planned.

2. What do you want to be when you grow-up?

A follower of Christ. Still madly in love with Andrew. A mother who has been faithful and diligent with the responsibility of parenthood. A loving and supportive daughter and sister. A best friend. Working with university students full-time. Still connecting with school-age kids too at some level, cause that love never goes away. Hopefully living near mountains or in a place that isn't so dang hot.

3. What book are you reading at the moment?

Ha! Uhm...let's see...The Rhyme Time Bible for Toddlers, I Love You Through and Through, Go Dog Go!, 1 Zany Zoo, Teaching Motor Skills to Children with Cerebral Palsy and other Movement Disorders, some book on how to read braille.....

I don't make a lot of time for reading for fun at the moment. I'm reading Strong-Willed Child. And just last night I stole Andrew's current book while he was off brushing his teeth. It's called Four Souls and it looks amazing. Realistically, I probably won't finish either of these books before summer is over. It's just my life right now. :)

4. How do you relax?

After the boys are in bed, I usually will skim through my current issue of Parenting or look through the Sunday paper adds....or watch a favorite show that was DVRed (probably months ago), Facebook, reading blogs, writing blogs. Sometimes the most relaxing thing is to load up the boys, grab a 79 cent junior frozen yogurt twist cone from Braums (my FAVE!) and just drive. Well, Andrew drives and I just get to ride and ahhh.....relax!

5. What color are your interior walls?

We have these 5 colors through the whole house. Chocolate brown, carmel-ish brown, yellow, brick red, blue, and blue with green and white stripes.


6. What is your guiltiest pleasure?

Chocolate. It's pretty unsafe for me to even be left even alone in the house with any kind of chocolate stash. And Starbucks. Guilty, because who really should pay 4 bucks for a stinkin' cup of coffee??!! Could seriously feed a lot of hungry children with that amount of money.

7. What time is bedtime/get-up?

UGH!!! Bedtime is too late.... midnight maybe. As my friend Jill told me, "You stay up so late because the silence is addicting!" So true!!! The boys are in bed religiously by 8. You'd think I could swing a 10:30 bedtime, but no.....the silence draws me in. :)

Get-up: 7:30 or so. Although today was 6:30 for a walk/run. Want that habit to continue.


8. How long do you spend reading blogs?

Some days, no time at all.

Other days, an hour.

It just depends. I follow about 8 blogs regularly.

Time to tag two other people:

Amanda: a sweet bloggy friend who has been a co-worker, a fellow NICU parent, a prayer warrior and a good listener.

Kimberly: A fellow twin mommy who I promise helps me keep my sanity.

Jill: A great blogger and friend. Mother of two boys also, which alone makes her SUPER, but I've always admired what a great mom you are, Jill!

TAG, YOU'RE IT!!!

100

The most exciting news this past month.....

June 8th we celebrated ONE HUNDRED DAYS of seizure freedom!!

And now, we're on Day 124.

I don't think a day goes by that I don't remember what it was like to count. Count seizures. Always tallying. Always keeping "the notebook" handy to record each horrifying cluster.

And it's never far from my mind....that this isn't everyone's reality...seizure freedom, I mean.

So, for all of those still fighting. My heart still hurts for you. Still fights alongside you. Most of all, still believes with you.

MIA

Boy o boy. The blog gods are probably angry. My last post was over a month ago. I promise I have many good reasons.


Sleep deprivation.

Grandma and Grandpa Hoggard in town.

sUmMeR!! (who wants to sit inside and look at a computer screen?)

Therapy, therapy and more therapy.

Road trips.

Father's Day.

Date nights (thanks, mom!)

Watching World Cup games.

Weddings, baby showers, going-away parties.....

Two really cute boys who are just so much fun....

And, I'll admit....a looming sense of overwheldmedness. So many things to blog about, I don't even know where to start.


I think most of our "Followers" (how weird is that term??!) on here are also Facebook friends, so most of you have probably at least seen a few pictures that I mangaed to upload this month.

Anyway, I hope to get caught up soon. I may have to post a little something everyday......

'Cause there really is a lot of great stuff happen' around here.

For now, just wanted to let you know that my MIA status has been for good reason!