Archive of ‘motherhood’ category

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.

 

 

Though She Be But Little…….

I pray she will continue to be fierce.

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So far, our Melody has been sassy, strong, outspoken, happy, did I mention strong?

Two years ago today, I posted this.

My world was broken. My heart was sore.  My soul felt very depleted. I was sure that our chances of having a sibling for Evan were extremely slim if not gone.

Over time I came to accept that, and embrace the family of three that we had become.  But there was always a little voice inside that whispered, “a sibling would be so good. for everyone.”

Fast forward to the present. We have a thriving almost seven month old little lady.  She makes her presence known and her development is one of the most amazing things I have ever witnessed.  Because of how hard Evan had to fight for each milestone, it just blows me away how rapidly things are happening for Melody.  I am torn on a daily basis between shouting how excited I am from the rooftops, or feeling compelled to compare this experience with Evan’s first year with each new developmental leap she makes.  I am so glad we had our children in the order we did. Evan’s experience was completely his and his alone.  I had nothing to compare it to, so I didn’t feel the delays as heavily as I might have, if he had an older sibling.

I felt my eyes sting with tears the other night.  I was reflecting on how I prayed nightly while pregnant with Melody. I prayed that Evan’s sister would fiercely love and defend him.  That he would be her hero and they would be good for each other.

Even though she now takes things away from him and she loves to yank his hair, you can see adoration in her eyes.  I hold her up to look at his school picture before he gets home from school and she giggles and kicks her legs all around in excitement.

Melody has her whole life ahead to decide who she is, and who she wants to become . But for now, I will revel in their relationship.

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2016, “yes please”

Well hello there.

Yes, I’m still alive. Barely kicking but alive. And well.

One day old baby girl and her mama

One day old baby girl and her mama

Seriously though, we did it. We had a second baby. A daughter. Boy do I love saying that.

No complications at birth, no digestive issues as of yet, no cardiologist visits, no red flags. Relief at every corner. We know that isn’t a permanent feeling but I’ll take it.

Melody has showed us from day one that she is HERE and she needs to be heard.

Evan and "Pipes"

Evan and “Pipes”

First time brother meets sister

First time brother meets sister

I keep saying, “She is going to give us a run for our money,” and Todd said so truthfully back to me, “I’m counting on it.”

Which is so incredibly true.  I would be lying if I said my truest, most real hopes and dreams for Melody include her being able to watch out for her big brother.  Being able to stick up for him, model skills and language that he can’t learn from us, and most of all, love him with a fierceness only she could.

I often feel guilt thinking those things because the last thing I want to do is put pressure on a little girl who isn’t even four months yet.  I want her to grow into her own person and figure out what and who it is that SHE wants to love, support, and be a part of.

But then I see her gazing at Evan.  Watching his every move. Smiling at his laugh.  Studying his actions.  And slowly Evan is returning that gaze.  Most of the time we have to prompt him to talk about her or acknowledge her presence.  Except for when she is hiccupping.

He LOVES that. He will imitate her and say “Silly!”

But the other day I was in the kitchen getting his dinner ready.  Melody was in the exersaucer and Evan was playing with the music on the front. (go figure).  They were in the living room, out of my direct sight.

All of a sudden I hear, “Hi Melody!”

My heart soared.  Just typing it brings tears to my eyes.  He wanted to connect with her, just because. And he did it with words. Such a small two words for most people but for us…

HUGE.

He has adopted the phrase “yes, please,” after everything he asks for these days.  I didn’t teach it to him in that exact way, but it has stuck.

Thus, I say, “2016……yes, please.”

We’re ready.

Siblings, a dream that became a reality

Siblings, a dream that became a reality

 

Acceptance

Baby girl....I'm ready to meet you.

Baby girl….I’m ready to meet you.

39 weeks tomorrow.  I woke up today with a weird sort of peace and calm.  And that has been hard to find in the last month or so.  With the heat of the summer, daily bouts of contractions, Evan’s CHOP overnight stay, some potty training regression, anxieties about the baby/transitional period to come- it has just been a different last 5 weeks than it was before Evan was born.  I think back to that last month before his birth (where I took entirely too long of a maternity leave before he was born) I took long walks each day, bounced on my yoga ball, wrote my unborn baby letters, I read baby blogs at length, and just was so wide eyed and excited in general.  I didn’t have a lot of false labor, and the weather was kind to me.  I just re-read this blog I wrote the night before Evan was born, 5-26-2011, and I smiled at my naivete.

I also re-read this entry that I wrote to all the different mamas that I have been in the last 4 years. Dear Mama

Phew. No wonder I am feeling so differently this time. It has been a wild ride the last five years since we lost my Dad and found out we were pregnant with a future Evan.

This guy made me a mama….

One thing that I do not handle well is uncertainty.  It’s not in my DNA to find peace in the unknown, or to accept that I do not have control over everything.  But….I have been working REALLY hard at it for a long time.  Just because it is hard for me, doesn’t mean I can’t try.  So this morning, I wake up, feeling a little more at peace, and very very VERY ready to meet this little girl.  I also am striving to find acceptance of the unknown.  Not knowing who she will be.  Not knowing if she will also have special needs or developmental delays, or the like.  Not knowing if the labor will last 2 days, 2 hours, or 30 min. Will she love her brother with all her heart? Will Evan be able to break away from his toys and music to love her right back?  Can I sit in the quiet moments with this little girl and breathe deep knowing that no matter what happens…..It WILL be okay.

Because when I read back to Evan’s diagnosis story. I remember those fears, those questions, those unknowns that were suffocating, blanketing, all encompassing.  And I sit here, over three years later, with another child in my belly- and it HAS been okay.  Evan is potty trained (going through a little regression but we’re on it), he’s going to school full time, he is loved by classmates and teachers alike, he runs up to me when he sees me after a day of school saying mommy, mommy! He is starting to read sight words, climbing into his car seat himself, finally spitting after he brushes his teeth! And we are about to have another  child after sending two babies to Heaven.

I still don’t know what will come in the next day, week, year, decade.  And that is not easy for me. I’d love it if God would just send me a little date planner and let me know when each milestone will happen, when she’ll sleep through the night, when Todd and I can go out on a date again (where I don’t feel like I am going to fall asleep after two min), when Evan will be invited on his first official school playdate…….

But that’s not how it works.

Instead we all plow through our days and lives doing the best we can as things happen.  The amazing, the excruciating, the beautiful, and the mundane.

Acceptance.

Grace.

Letting Go…….

I AM getting better at all of those. And I won’t quit until I’m no longer on this planet. Because this is all worth it.

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Can’t wait to add a new one with Baby Sister. Stay tuned!

 

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. :-/

Celebrating the Tantrum

There are some odd things we do as parents of littles with special needs.  I guess they aren’t odd to us, but they might be to others.

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Imagine big heaving breaths with this face. Repeat.

One of those things that I find myself doing lately is celebrating the typical.  Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum.  Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.

But…….

I celebrate that he is being a three year old.  That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.

Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum.  I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.

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Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…

But then…….

I realize, my son is doing something that most toddler-preschoolers do.  Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.

Nope.

Just because he is young, and because that is what they do from time to time.

And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.

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I hate pants.

I better go prepare myself, time to get him dressed. Wish me luck.

 

 

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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Time keeps on ticking

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September 2013, 26 months

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Walking in like a boss

A year ago, we took those pictures. Wearing a plaid button down onesie and walking with a super wide gait and arms up like a T Rex, our son plowed his way into school. I wasn’t sure if it was the right time for me to go back to work. The right time for Evan to be in school. It ended up being the PERFECT time for him to be in school. He flourished and was loved. Boy was he loved. Man, I could go on about that school for hours….

Anyway.

Fast forward a year.

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September 2014, 3 years old

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P.S. that is only half of his supplies…..

Evan started official big boy school yesterday. At a school with children in grades Preschool-6th grade. If you know me at all, you know I was a teeny bit of a wreck yesterday.

Yes. You are correct. He did just fine. I thought he would be so tired tonight after school for 4 hours and then going to hippotherapy and riding Vixie. Nope. He was energetic and ready to go until about 8:45 pm. Teacher reported he sang, met new friends, and followed all directions today.

Sigh…..worry really does get you nowhere doesn’t it?

Trust me Mama.

I got this.

I know buddy……….

Darlin’ Do Not Fear

I was getting ready in the bathroom the other day and I felt like I needed some music to move me along. One of my favorite albums is the Parenthood TV soundtrack. I am one of those. Those who LOVE soundtracks. My dad and I would croon along to the Cocktail soundtrack on roadtrips. And don’t forget the infamous cassette tape of us singing “I’ve Had the Time of my Life,” from Dirty Dancing. (recorded in an amusement park “recording studio” nonetheless) It’s kind of amazing, and kind of scary.
Anyway, I heard these lyrics, loud and clear:
If you have a broken heart or a battered soul
Find something to hold on to or to let go
To help you through the hard nights like a flask filled with hope
Darlin’ do not fear what you don’t really know

“Cause it won’t last – your worries will pass
All your troubles they don’t stand a chance
And it always hurts the worst when it’s the ones we love the most
Darlin’ do not fear what you don’t really know

Do not fear what you don’t really know.
How simple is that? Do not fear the unknown. If you cannot control it, and it is in the future, however distant- don’t fear it. Clearly this is much easier to read and talk about, than it is to put it into practice.
But I thought I would try.
Should I focus/worry about the things I do not know for 100%, like will Evan develop heart issues? Will I get pregnant again? Will we have another baby with special needs? How will Evan be accepted in school?

Darlin’ do not fear…..focus on the things you DO know.
This I can do.
I know that we participated in a fundraising walk for Williams Syndrome this past weekend and we were surrounded by people who love us.
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I know that Evan is finally starting to use the pronoun “I” when talking to us.
I know that Todd gave me a mother’s day card yesterday and in it, he listed all the things I do for Evan and it made me melt.
I know that Evan played with his new teddy bear and practice pretend skills without any prompting.
I know that I work with some of the most supportive individuals.
I know that all I need to do is make Evan giggle (not a hard feat) and my mood will lighten.
I know that the beach is a happy place for me, and I was able to go there a few weekends ago (BY MYSELF) because of the kindness of a friend, and the support of a loving husband.
I know that it brings me a type of peace and pride to share about Williams Syndrome to anyone who will listen.

For now, I can heed Brett Dennen‘s advice.
And it’s all about that, right, the moment to moment observations?
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Take a chapter out of Evan’s book.

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