Archive of ‘me’ category

“This is not what I expected, either.”

“He’s 6 years old, he should be able to walk the block without complaining or flopping.”

“Trick-or-treating should be fun, not stressful.”

“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”

“Field trips should be such a fun day away from school….”

These thoughts either go through my mind or they cross my lips far too often.  Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan.  Mix them all together and then line them up against who Evan is…..and how he is wired.

At a town wide Halloween festival. This was the extent of his happiness.

Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike.  But…he likes to do that on his own time and on his own terms.  So we find ourselves planning an outing- where people familiar to Evan are going to be present. We think, he is going to love this, he loves ____________ (enter name here).  We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place. 

We get to said place, and things will change rapidly.  Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him. He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature.  The content, giggly boy that we left the house with is now very reserved, and even agitated. I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.

Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”

I know your heart just broke. Mine often does too.  But he does say “I’m sorry” for many different reasons and emotions. It is a go-to phrase for him right now when he feels any type of discomfort or confusion. 

But in those moments, it feels like he is saying,

“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”

Ouch. 

He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him. Social cues are foreign to him.  Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further. Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.

But to E- it is the gold mine of fun! Fans, alarm clocks, remotes, you name it. 

The past few months have felt very hard but very necessary in my journey as Evan’s mama.  I have picked him up off the ground more times than I would like to admit. I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.

We are closer than we have ever been. 

I think this is due to several things.

A huge factor is my dear husband’s involvement.  We are a team when it comes to doing what is best for Evan.  The summer proved to be one of the toughest for me in all my 39 years.  Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase.  Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles were tough when she was screaming that I gave her the wrong color plate. Todd made sure to give me ample opportunities to get out of the house when I needed to.  He didn’t get upset or try to fix it when I cried. He was just there.  When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible.  Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive. Actually, it is probably MORE reinforcing. Unfortunately.

One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day. I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it.  It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity.  Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me. 

It is also okay to take risks.  Try walking through a grocery store with E without a cart.  Try going to a friend’s house that has the motherlode of Fisher Price toys. 

Our expectations might not always jive.  Our experiences are going to be completely different. 

But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy. 

Yup, I’ll work on that this week…and next.

And for the rest of my time as Evan’s mama.

 

Never underestimate me, mama

Lying in bed with Evan tonight- (for the first time in a long time because of my injuries), I found myself feeling guilty.  I kept trying to engage Evan in conversation. 

M- “I heard you were practicing for kindergarten graduation. That is so exciting.”

E-“Hi, mommy! How are you? How are you? How are you?”

M-“You get to go up on stage and sing songs.  I wonder what songs you get to sing.”

(using declarative sentences instead of constantly questioning him is hard work, but it has come more naturally with time)

E-“V Tech alphabet train, the chug a lug song!”

M-“Hmmm….I don’t know that song, where did you see the alphabet train?

E-“V Tech, V Tech. Hi mommy! How are you?”

This is where the guilt crept in. The guilt because I was feeling dejected.  Dejected that I couldn’t get Evan to have a reciprocal conversation with me.  Just yesterday I had a conversation with Melody that lasted about 6 or so exchanges before she tired of me. 

And what did I feel? a hint of guilt…because I wish I could talk to Evan that way.

I wish he would WANT to talk to me that way. 

But maybe he does. 

Or maybe more accurately, maybe he is.

He is talking to me the way he needs and wants to. It just doesn’t fit my communication mold.

Right before I got up to let him go to sleep, I started singing,

“Lullaby, and good night.. little Evan….”

The next line as you know is “sleep tightttt”

Evan interjected, “wake uppppppp” and he sat up.

My guilt turned into a wave of warmth. 

This kid. Just when I think he isn’t paying one bit of attention to me.  He changes the lyrics in the song to communicate to me that “No mommy, I do not want to go to bed right now, stop trying to distract me.”

I am constantly telling people that there is much more than meets the eye with Evan.  Sometimes I just need a little kick in the pants to remember that myself.

 

 

 

 

Rain dancing.

“Life isn’t about surviving the storm. It’s about learning to dance in the rain.” -Unknown author

Mother’s Day 2017 was yesterday.  My mama stopped by and gave me a bracelet with that quote on it. 

Rain dancing.

We’re not touristy at all. (after hospital stay)

I didn’t realize until I read the bracelet that I have gotten pretty good at rain dancing.  I know that in general I am a glass half full person.  It is just who I am.  I can’t dwell on the difficult or the Hard for too long. Sometimes that isn’t the healthiest choice but I’m working on it.

One of the last photos I took before the accident.

Sometimes it catches up to me.

Sometimes I watch others get frustrated, angry, sad, infuriated; and I feel myself get frustrated because when do I get a turn to feel that way? But that is my choice. I am trying to learn to allow some anger, some sadness, some frustration into my emotional arsenal. 

But rain dancing. That I can do.

But I don’t realize I am doing it until later.

In front of a volcanic crater lake. NBD.

So we went to Iceland. My outdoorsy, mountain loving, traffic hating, lovable hunk of a husband talked me into a week long trip in the most sparsely populated country in Europe.  And I was so glad, and continue to be glad that we went.  #icelandisstillnice

For the ten of you who read my blog who aren’t family and friends- here is a brief synopsis of what happened on Day 5 of our trip.

We had reservations to take an one hour horse back tour with a guide across the countryside of Iceland.  Our son receives hippotherapy twice a month and I have always loved horses.  Todd had never ridden and knew it would be special for me so we booked it.  We dressed in these huge rubber trousers that were similar to what fireman wear, and we set off on our beautiful thick-coated horses with our young but experienced guide.  About 5 min into the trip, we both commented how well trained the horses were, how easy they were to ride, and how much fun it was.  We all stayed in a nice line – the guide, then me, then Todd.  The guide asked if we minded doing a slight trot with the horses and of course we said sure, so we trotted a bit.  It was fun but when we slowed down, I could feel a difference in my horse.

He wanted to keep trotting. He was very close to the guide’s horse and if I tried to pull the reins back, he tussled a bit with me.  We stopped to take pictures and then my horse started walking off to the side a bit. I tried to lead him back over, and for a split second it seemed like he was going to obey but then something just changed.

No loud sounds, no strange movements by me, the horse just started to run.  My first instinct was not to use a calming voice like she had suggested because of course I was startled and frightened. But then I remembered and I tried to use the techniques she suggested.

Terribly unflattering photo of my first time sitting up in a chair at the hospital

He wasn’t having it.

He took off like a shot and the rest is history.

History that changed me.

History that brought on more rain dancing.

What followed was a six night hospital stay at one of the two hospitals in Iceland, in the beautiful town of Akureyi.

I received/suffered/endured (not sure what the right wording is) five fractured ribs, a punctured lung with a pneumothorax, and a broken sacrum.

Five broken bones that cannot be put in casts. Cannot be set. And the sacral bone is what I make contact with, every time I sit down. 

View from my hospital room

It was scary. I’m not gonna lie. Lying on the ground after being thrown from the horse, coughing up blood. I couldn’t turn either way because my broken bones are on opposite sides of my body.

It was scary. 

But I knew I would be okay. Something kept me calm. Something told me that it wasn’t going to be fun, but it was going to be okay.

The handsome Icelandic EMTs who sat with me in the ambulance, telling me how much time was left until we got the hospital, they told me it would be okay.

The nurses who greeted me, who sat beside me in the ER while they tried to figure out what was broken, and how serious everything was. They kept me calm. They talked to me like everything was okay.

They know how to rain dance.

Helga, the young nurse from a nearby town in Iceland who had attended nursing school in Chicago. She gave me a foot massage and chatted with me about every day things, just to keep my mind off the pain.  She helped me brush my teeth and wash my face myself for the first time after being hurt.

She knows how to rain dance.

Skyping from far far away…

“Take a car ride to Iceland?” said Evan one night when we Skyped. My heart broke but there was also a part of me that felt such joy that my little guy missed me so much and wanted us home. We have worked so hard on keeping him engaged and connected to us- and he really missed his Mommy and Daddy. 

It was very hard to dance in the rain when I thought about my kids from my hospital bed- but my friends and loved ones kept texting, emailing, calling, sending cute little videos so I could hear their voice and see their smiling face. (I’m looking at you Talia!) In times of strife, you really do realize the love and light in your life. 

And then we finally came home. After a 5 hour car ride to Reykjavik and a six hour flight home, we came home to a clean home, and sleeping, very loved on children. Thank you Mimi, Pappy, Gran, and GrandRich!

Chilling with my girl

For the past 2.5 weeks, I have been setting up shop in my bed, regularly icing my fractures, trying to stay comfortable, and walking around when I can.  I went from a wheelchair to a standing high walker, to crutches, to a slight limp.

Rain dancing was really hard the first week I was home when I couldn’t sleep because the pain was so intense. When I had to get an elevated toilet seat because I couldn’t bend over at all. When my son only wanted to climb on my lap and no one else’s so his behavior became erratic and he acted out. 

But somehow we got through it. And one day I looked to my left and both kids were in bed with me. Melody in the crook of my arm and Evan lying next to her.  He looked up at me and said, “Hi mommy! Can I go in Mommy and Daddy’s room? Can I cuddle you?”

He asks questions that he already knows the answer to as a way to communicate and stay engaged with me.

It hit me all at once. Without realizing it, I had been enjoying my time with both kids immensely. Take out the responsibility of keeping up with housework, teaching, and all that was left was a focus on my recovery and the time spent with family.  I felt guilty that I couldn’t do the dishes or walk down the basement steps to do the laundry. I hated not being able to take the kids were they needed to be.

Enter rain dancing.

All that was expected of me was a focus on my healing and when I felt well enough to sit with the kids in bed- this awesome thing happened. They both figured out ways to spend time with me in bed.

Evan reading with his head in my lap (ribs protected by a pillow)

Mother’s Day music time

Just last night, Melody snuggled up next to Evan and just said to herself, “I love you, Evan.” and closed her eyes and smiled. 

Those moments are hard to catch when I am caught up in cleaning up after the kids at night, making lunches, laundry, and my mind is 153 different places.

I want to remember this.

I want to remember what it feels like to just focus on family. Just focus on the kids, my husband, my mom.  Whomever is with me at the time.

I know that will become difficult all over again when I go back to work in a few weeks and more responsibility is back on my shoulders. But I do hope that I can remember what it felt like to dance through the raindrops these past few weeks.

**Update:

after writing this earlier today- Evan had a seizure, after having one last night. He had four in one day last week.  I felt myself tense up all over. The worry is back, the concern over if we are medicating him correctly. The neurologist is talking about more aggressive meds, new tests….

Rain dancing is really really hard when these things crop up.

Just being real.

But tonight Evan put his head on my stomach and listened to the digestive sounds it was making and we had a huge laugh about it. I used to do that with my mom growing up, and it cracked me up. He likes to play with the word and pretend to say the ch sound at the end so he kept giggling and saying, “stomach (with the ch digraph sound)” and then “how are you?” with a big grin on his face.

I’m going to think about the stom-itch sounds instead of the seizures.

At least for a little while.

 

 

We’re Not Perfect

Phew.  Our kids really teach us some tough lessons right when we need them to, don’t they?  In an effort to blog and share a little more often before Baby Sister comes, I thought I’d share this quick story.  Lately I have been struggling with patience, especially with our dog and our son.  This is not a new struggle for a parent, I know this.  Especially with a four year old. Especially with pregnancy hormones. Especially with a four year old who does not really realize/understand/care that I am supposed to have some authority over his life. Sigh…

Especially because I am hot, uncomfortable and not at my best. (I’d insert a picture here, but who wants to see that?)

We have been trying to find strategies, techniques, direction, anything to help us with teaching Evan right from wrong, especially when it comes to our dog.  He has been overly aggressive with her and for some reason even though I know in my heart that she is not really hurt, and Evan does not really understand what he is doing- it GETS TO ME very badly.  Like nails on the chalkboard badly. Like lemon in a paper cut badly.

I guess everyone has their things that get to them. Traffic, dirty floors, lateness….

Evan smacking the dog. This is mine. For this week.

So the other day there was a swirl of rough things that occurred in a short amount of time.  We were probably late for something (not new), the dog was anxious because she could sense that we were preparing to leave the house. Evan has decided it is super fun to not want to wash his hands, get dressed, come to the car, you name it, he decides on a daily basis what he is not going to do that day.   At that moment he was avoiding one or more of those things. The dog started barking at something outside, Evan smacked her and I lost it. I yelled and I think I scared all three of us.  I am not really a yeller by nature and lately it has come to my attention that maybe I could become one if I am not careful.

After all three of us cried, well at least two of us. (not Zoey) Evan started marching around the room.

He bounces back rather quickly.

This is what he sang.

“We’re not perfect….no we’re not. We’re not perfect. But we’ve got what we’ve got. We do our very best, we do our very best, we do our very best each day. Cause we’re not perfect……but you know that I love you that way.”

Yup. a beloved Laurie Berkner song that we have been singing a lot lately. (he really over articulates the t’s.)

And he sang it right when we all needed to hear it.

Nope, Evan, we’re not. And I’m going to keep working hard to be patient and you are going to keep working hard to be the best Evan you can be.  And Zoey, well she will benefit from both of us doing that.

We’re not perfect, but we do our very best each day. (at least we try.)

This face helps me to keep trying...

This face helps me to keep trying…

Choosing the bigger cart.

Hello my lovely, supportive, and probably bored readers.  I am very sorry that I have not been the diligent writer that I was last year.  I can give you numerous excuses but the biggest being that I have been falling asleep before 9 many nights and that was my prime writing time.  I do want to write a separate post about this, but the big news is that our household will be expanding to 4 in September.

17 weeks

17 weeks

I’m currently 18 weeks and doing very well.  Another time I will try to write about how different this pregnancy is, given our history and given we have this ball of boundless energy to contend with this time around:

Watch out!

Watch out! (Evan almost 4)

What I wanted to address in this post is this scenario, that I truly believe sums up most days of my life.

Have you ever entered a grocery store, thinking, okay…all I have to get are tortilla chips and salsa, so I will just grab a hand held basket and run to that aisle.  Then you find yourself remembering you need milk, canned beans, and some produce that you ran out of?  So you think, I can fit that in my handheld basket, no problem.  It’s not that long of a trip around the store.  But by the time you get to the register, your forearm is bruised from how heavy your basket is. And you think, jeez if I had just taken the time to get the bigger cart……

If that has never happened to you, then maybe this won’t make as much sense to you. But I have done that NUMEROUS times, especially when I was single and living alone. I always had the mindset that it would be silly for me to push around this big cart when I was only shopping for myself. And I almost always regretted that ridiculous assumption….

The larger picture is that this habit of putting too much into a small basket is a problem that I face with my life’s daily activities.  (I apologize to my close friends who I have already shared this with) I often will look at my calendar and think, sure! We can fit in a hippotherapy session

A little snow doesn't stop hippotherapy!

A little snow doesn’t stop hippotherapy!

two hours before a baptism party that is 45 minutes away. I can squeeze in a hair appointment and make it home to relieve my mom by the time I promised. (and I walk in 30 min late, every stinking time) I’ll think, Evan really deserves some outside time with me, I can fit in a walk with a playground run before I make dinner (and after working 7 hours)

Nine times out of ten, I find myself at the end of one of these too small basket days, feeling very harried, very disappointed in how the activities panned out, and just plain exhausted.  My husband and I both like to travel, hike, take day trips, etc but we will plan a weekend where there isn’t one moment free and at the end we’ll feel like we need a weekend to decompress from our weekend.

Sometimes I thrive on this activity, the busyness can be exhilarating, and just what I need.  Other times (and more often these days), when too many things are scheduled in a day, the actual activities will never live up to the expectation surrounding them because they just plain can’t! Because we are too tired to enjoy them or because we are busy getting stressed thinking of preparing for the next place we have to be.

Today found both little E and I feeling very under the weather. I think I have a pretty bad sinus infection and he has the beginnings of a head cold or the same thing. Of course being pregnant, the only real remedies available are the neti pot, humidifier and rest.

We were supposed to attend a family celebration this afternoon and my very wise husband talked me out of it, saying, you don’t feel well right? And Evan doesn’t feel well right?…..and the logic was too clear for me to argue. Even though the guilt monster crept in as it typically does.

This afternoon Evan (who you know has not taken a proper nap since he was 2) slept for almost 4 hours.

Yup.

I slept for two, and then read a fluffy novel that had nothing to do with work , therapy, how to be a better parent, etc.  It was just to pass the time and help me to stay still.

I chose the bigger cart this afternoon, and I am much better for it.  I think my boys are too.  I just need to learn to do this when I do not have a stuffy nose causing me to make the decision. :-/

Just a Mom

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Some days, that is all I want to be.

Just a Mom.

Just another mom of a toddler,  changing diapers, making nuggets, pushing swings, reading books, snuggling, singing, navigating tantrums, giggling, and collapsing into bed.

Sometimes I can do just that. (well that and go to work….but that is for another post)

Unfortunately, the majority of the time, that is not the path paved for me.

Lately I find myself being his case manager. His occupational therapist. His speech therapist.  His medical manager. His nutritionist. Evan’s project manager, that’s me. I just spent the better part of an hour on the phone with our insurance company trying to fix a claim that I have called about 4 other times. Great way to spend my morning off. Sigh…..

I read a post the other day on the Williams Syndrome Support board from a mom who was asking if other parents felt the same way,if it is just easier to wear all the therapist hats ourselves. To stop relying on professionals to direct our way, and instead take things into our own hands because who else will?  I totally hear her plight, and I can see where she is coming from. But it also makes me sad.

Because I just want to be a mom. Plain and simple.

Trying to be "just a mom"

Trying to be “just a mom”

I can remember talking to Evan’s early intervention speech therapist, Miss Becky, (who we miss dearly) after one of his sessions back in the spring. I was asking her numerous questions of how we should be communicating with Evan, to better foster his language. I was probably beating myself up a little for not doing all the “homework” she assigned us from the previous session. She interrupted me and said, “Erin, you have to just be the mom, sometimes. It’s okay. You shouldn’t have to be the the therapist for him, let us do that.”

Wow. That was a little wake up call. Sometimes I feel like all my interactions with my son are calculated. What toy can I choose that will get the most bang for our buck? Will it help his fine motor pincer grasp? Will it foster the need to communicate with me because he will need assistance? Does it provide opportunity for turn taking? Have I put away all the distracting wind up toys and musical things that would pull his attention? Is the dog in the other room so she doesn’t bother us?

And then sometimes I just lie down next to him in the playroom and I pretend to sleep and making funny snoring sounds.

Honestly, that is one of my favorite things to do right now.

Because he crawls over to me, lays his head on my chest and says, “Mommy’s sleeping,” (sounds like Mommy’s sweeping) and then he makes the same funny snoring sound I am. I guess that is calculated on my part too, because I know he will snuggle with me and I do not have to think about anything else but being his mom for those few minutes.

Bliss.

And then I will “wake up” and make sure he is not w sitting, wait for him to initiate communication for another toy and start project managing all over again.

But for those few minutes, I was “just a mom.”

More than enough for me.

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when Sorrow walked with me

My heart has been weighed down with this blog entry for about a week. It has haunted me actually. Needing to be written.  I mentioned in my last post that I’ve suffered multiple miscarriages. So it’s not a secret, but for some reason I have chosen not to really delve into it on my blog.  I think partly because my first miscarriage was so wrapped up in my father’s passing, that I didn’t really process it.  Evan was born a year later, and we chalked it up to one of the very common first pregnancy miscarriages that we’ve read about.

But here I sit four years after that dreadful week where I found out I was pregnant, lost my dad and then lost our first baby all in one fell swoop. Since that point we were so incredibly blessed to become pregnant again (very quickly much to our surprise) and have a beautiful baby boy.

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Evan Robert June 2011

We received his diagnosis of Williams Syndrome a year later. Since that point, we went back and forth about having another  child.  The discussion was laden with many factors. Our age, the possibility of having another child with a diagnosis, and my fear of another period of awful post-partum anxiety.  Ironically, we didn’t really discuss the possibility of miscarriage. It may have crossed T’s mind, but I didn’t really consider it very seriously.  I was more worried about what would happen after the baby was here, not the possibility we might lose another one.

Yup.

If there is anything I have learned in these last 4 years, it is not to count anything out. The good possibilities and the bad ones. The very good and the very bad. I tried so hard to rest in the mystery, rest in the unknown, put it into God’s hands. I had prided myself in losing the need to ask “why” all the time for the challenges in our lives.  I realized that no matter what I did, things were going to happen, good and bad, and I might never know the reason. It’s in God’s hands, I would tell myself.

For whatever reason, God’s hands decided to change our trajectory yet again. He decided to take a second child from us before we could even meet him or her. I am a Christian and darn it, this has tested my faith like nothing else.

I’m pissed. I’m frustrated. I’m devastated. This time around I most definitely am processing it.  Whether I want to or not. As my friend Jamie said, “The universe is making sure you go through it.” She is so right. Beautiful, glowing pregnant women everywhere. Some are very treasured friends of mine who I am thrilled for.  But that doesn’t make the loss of our baby any easier.  Baby showers, pregnancy announcements, smiling babies at Target. National Siblings Day was celebrated all over Facebook the other day. Another reminder that we may not be able to provide a sibling for our son.  Repeated blood work to make sure my pregnancy hormones are going down. Unsuccessful blood draws that have led to repeated visits to get MORE blood drawn.  Weeks of cramping and bleeding after we lost him or her.  I won’t even go into the actual physical process of losing a baby.  It’s horrific. I am conflicted about it because I understand why people don’t talk about it, but at the same time, when you go through it you feel so alone. No matter how many people love and support you.  You are on this island, wanting to grieve your baby and still physically carrying him.  It’s simply awful.

It’s not fair. I want to kick rocks and scream ala Charlie Brown.

Actually, I want to stop kicking rocks and crying. I want to get over this, and move on.  But I know that’s the whole point of crying and kicking rocks. In order to get through grief, you actually have to feel it. Well jeez. That just stinks.  I like to keep moving. To keep busy and focus on the beauty that is around me, not the pain and crappy stuff.  It’s not really part of my genetic make-up to focus on the negative. But it’s also part of my genetic make-up to take care of everyone around me and sort of forget myself.

So…..here I sit. and I walk with Sorrow. And I am sharing it with you because it is the only way I know how to be honest with myself. The days I sat at home waiting to pass the baby, I tried to find blogs about miscarriage that would help me feel less alone, but also give me some hope.  This poem gave a little light to my walk:

I walked a mile with Pleasure;
She chatted all the way;
But left me none the wiser
For all she had to say.

I walked a mile with Sorrow,
And ne’er a word said she;
But, oh! The things I learned from her,
When sorrow walked with me.

-Robert Browning Hamilton

So today I walk with Sorrow. And as strange as it sounds, I feel less alone for it.

Walk the Line

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I feel physical pain when I look at this picture.

This is hard to write about.

Tonight I walk the line.

Tomorrow I probably will too.  I might stay on one side, linger for a little while, and then I will go back to the line. Teetering ever so slightly, trying to keep my balance.

I walk the line between complete acceptance of Evan’s Williams Syndrome, almost to the point of celebration- and complete worry, disappointment, and concern for his differences and how they will affect him throughout his life.

When Evan giggles and jumps in his car seat peering out the window, simply thrilled to be waiting for me to bring in groceries and to see me peek out of the door to see him- I celebrate his WS. I celebrate that he is filled with joy, simple, unadulterated joy about 80% of the time.  When he whispers “I la you” before I leave his room at night- three words we have worked on for over a year, I celebrate.  When the director of his preschool writes me a note, thanking ME for allowing them to be Evan’s teachers because of the light he brings to their lives- I celebrate. (I also blubber like a weepy fool- but that is another story)

When I watch video of adults with WS lamenting how difficult their high school experiences were due to bullying, I am concerned.  When I hear an adult with WS say to a newly diagnosed child’s father, “I am so sorry to hear she has WS, it can be really hard,” I hurt.  When Evan greets someone with a happy “Hi!” and then repeats it over and over and over no matter how many times the person responds, I feel a little weird inside.  I feel guilt because of course I know he means well, he just wants the positive interaction- but I also know the recipient is wondering how to respond. And then I start thinking about what will happen when he is in middle school and he greets others with no abandon.  When I listen to other children Evan’s age and I realize how far behind he is with speech and language, I can feel disappointed.  I live in a little bubble sometimes, where Evan’s progress is only compared to Evan’s progress.  Until, it’s not anymore.

When I hear E singing on the monitor, singing, “The Water is Wide,” and then humming the parts where I hum because I do not know the lyrics, I feel joy.  Pride that my son has Williams Syndrome. That he has an emotional connection to music that even I cannot comprehend. When I talk to others and educate them about WS, I enjoy talking about it, I feel pride in every detail that I share.

But then I can be quick to say, “But don’t forget, Evan is not defined by his diagnosis. He is Evan first, and he just happens to be missing a 25 or so genes out of over 20K that we each have. It is just a small part of what makes him Evan. ”

I just keep walking that line.

The line between celebration and worry.  The line between pride and guilt.

I can say that I am on the side of celebration far more than I am on the other side. I feel very blessed for that to be true.  But the other side exists. And it can be an ugly, dark spot to step into.

That is why I walk the line.

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Striving for Celebration

 

 

This Little Light of Mine

I can hear Evan in my mind singing along with me, “Hide it under a bushel?”
“NO!”
he exclaims with his hands awkwardly banging together in insistence.
“I’m gonna let it shine…”
bushel
 Recently I made a decision to take care of myself in a more deliberate way.  If you know me personally, then you know about it first hand because I have a hard time not talking about it.  I decided in December to do a 14 day sugar detox.  I signed up with a friend’s healthy living business- Smart Sexy Living, and cut out gluten, refined sugars, and processed foods for 14 days.  It was harder than I could have imagined and more rewarding than I ever thought possible.  It taught me so many things about myself and how I look at food. I don’t want to make this whole post about my new lifestyle.  But I do want to share why I have made this choice and why I am continuing to eat differently and treat my body better.  For the past few years, since becoming pregnant and then a mother- I have had this nagging feeling like I need to take better care of myself. That I need to put myself first, at least as much as I can with all the different hats I wear. I realized that I have a little issue with lack of control.
Just a teeny little one.
Ahem.
Don’t we all, though?  We get upset when our child is sick, because we cannot heal him. We get upset when our car breaks down, because now it is out of our hands and in the hands of a mechanic.  We get frustrated when someone cuts us off on the highway because we were minding our own business and following the rules, darn it!  It is out of  our control.
Out of my control that my son was born with a genetic deletion.
Out of my control that my father passed away at 63 and I did not get to say goodbye.
Out of my control that every day I can try as hard as I want to dictate what is going to happen to myself and my family but some time things are just not up to me….
But I realized, I can control what I eat. I can control what food and drink items I bring into the house.  I can control how I look at food and how I treat my body.  Those things ARE in my control.  In fact, no one else dictates what goes in my mouth. As much as I like to blame outside influences- like advertising, or bad work days, the treats in the teachers’ lounge, or hormonal inbalance (that happens EVERY darn month!)- in reality- I still am the one in charge of my diet. And when I say diet, I do not mean diet like counting calories, points, following a set plan- I mean what foods and drink I consume.
It feels good.
Real good.
It feels good to take care of myself in this way.  To allow my light to shine.  To realize that even though Evan, Todd, and my students come first so many times during the course of my day- if I am caring for my body by eating well, then I am actually able to take better care of the people around me.  And in turn, I feel more confident about letting my light shine.
After the detox, Heather, the creator of Smart Sexy Living wrote me an email asking if she could quote me for a testimonial.  She quoted one of my emails to her as saying, “A family friend told me that I needed to quit my job and become a model.” When I received this email from Heather, I balked at the idea of her using that quote. I felt embarrassed and felt as though I was bragging.  She responded to my email saying she would gladly take out the sentence- but she then said, “not to be woo-wooy- but let your light shine!” and she included this quote:
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
-Marianne Williamson
It really resounded with me.  Why are we so afraid to share our successes? To let our beauty shine through for everyone to see? We encourage our children to be who they want to be, to be proud of what makes them exceptional, what makes them beautiful inside and out.  Why are we afraid of it?  What kind of an example are we giving our children if we hide behind our beauty and our unique abilities?
By cutting out gluten, refined sugars, and processed foods (I’m not perfect, but this is what I am trying, anyway)- I am letting my light shine.  And it’s about time.
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How can you let your light shine?
You know you are awesome, don’t hide it!