Onions. We’re all onions.

Disclaimer: I am fresh off of being an audience member in Glennon Melton’s presence (of Momastery fame.) So I am borrowing a few of her insights with you, and not claiming them to be mine at all!

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Glennon. In all her petite, wise, spunky glory.

I just spent a while trying to find references to Momastery in my early blogging days and I couldn’t find the one post I wanted. Probably because I am just so savvy with this technology that I lost the post in the transfer from Blogspot to WordPress. Sigh…. Anyway….

When I was a new mama, at home, delirious from sleep deprivation, and feeling lonely even with my beautiful baby in my arms- I found refuge in her writing.  This post in particular put in words how guilty I would feel when everyone would say that I should soak in every moment, that time is going to fly, etc etc. When in reality, time was CREEPING by because of the awful anxiety I was feeling and the guilt that came with not being gosh darn happy enough! Hormones are awful awful things. Thank goodness they eventually even out. front

She inspired me to change my blogging efforts to be more honest, more raw, to put my true feelings out there- however scary, ugly, and real they were.  And in doing that, I have received a much larger response from readers.

And this is why.

Yesterday Glennon said something that made so much sense to me. So basic, so black and white, so simple. Yet, I had never really thought about it before.

There are a lot of very lonely people out there. People who have big beautiful families can be lonely. People who live by themselves can be lonely.  People who work in bustling offices can be lonely. People who work at a computer screen all day can be lonely. Glennon said that we all like to stay on the surface with our discussions. Talk about counter top materials, where do we take our children to the doctor, our feelings on the latest big reality show on Bravo, etc. Those conversations are necessary. They keep us moving along. They are safe, easy.  But what we don’t realize is that if you go down, really deep down, strip past the superficial layers and get to the real heart of each person- we are all the same. We all struggle with addiction, depression, anger, envy, lust, self loathing, fear, grief, you name it. You won’t find a person who has not been faced with something Hard in their lives. And when we get down to that layer, and we share those experiences, all of a sudden, we can’t feel as lonely anymore. It is just logical sense. You feel lonely because you think your problems are so big and so heavy and no one could possibly understand them. But the truth is, there are plenty of people. Plenty of people who have hit rock bottom and lived to tell the story. Plenty of people who have watched others hit rock bottom and stood by them faithfully while they picked up the pieces. Plenty of people who are still struggling and continue to put one foot in front of the other because that is all they can do. Our stories are unique to us, that is true, but there are common threads that are undeniable. 20150221_124143

As a 37 year old (almost), I find myself feeling much less lonely than I did at 21 when I had the rest of my life ahead of me.  I think one of the biggest reasons is that I am far more honest with myself and with my loved ones. I am still a HUGE work in progress, but I’ve come a long way from that young girl who felt unworthy of love. Both Glennon and a dear friend of mine said yesterday that they do not feel ashamed of who they are, their faults, their struggles- they own it, and they feel comfortable putting it all out there. I’m envious of that total lack of self judgement. But again, I’m working on it. As I am sure they both have had to in their lives. Remember, therapy, it’s a beautiful thing. Gift certificates should be available.

Am I right?

Wished I could just sit down and chat with her for hours.

Wished I could just sit down and chat with her for hours.

 

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.

 

 

Seeing the Diagnosis

“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”

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Probably his favorite memory from the holidays was finding this waiting for him (WITH BATTERIES) at Mom-Mom’s

Anyone with children, or daily exposure to young ones- has probably heard those phrases coming from a few different toys.  Fisher Price has done this very lovely thing and used the same sing-songy female voice to say “It’s learning time! It’s music time!” when you press certain buttons on their toys. Most distinct examples are the Laugh and Learn Puppy and the schoolhouse frame you see in these pictures.  IMG_5481

Evan loves this toy.  No, he LURVES it. With every ounce of his bouncing, joyful being.

Here’s the catch.  I do NOT love it.

In fact, I get a knot in my stomach when I see it in the store or at someone’s house. (please do not feel badly if Evan has played with it at your house, believe me, this is my hang up, not his)

I used to love it.

Evan started a cause and effect game with us using this toy.  He would open and close the mailbox until he would get the right combination to produce the alphabet song.  Then he would glance at us (mommy and daddy) to wait for us to sing the song along with it.  We were so tickled that he figured that out and he was connecting with us through this game. This was when he was about 17 months.

Notice the abundance of musical, electronic toys.  This was before we visited Dr. Mervis and were advised to get rid of all the toys that had on-off switches and incorporate more “old-fashioned” toys. This suggestion was made to encourage Evan to do more engaging play that required him to use his imagination and also communicate with us when he needed help.

Herein lies the title of this entry.  When Evan encounters this toy, or any toy that is similar in fashion- one that has a switch that turns on music, action, or lights, he becomes entranced and very involved in the toy.  It is difficult to get his attention and even more difficult to elicit any communication.

My heart literally ached on Christmas afternoon when my dad’s wife (he calls her Mom-Mom) came in the room to greet Evan and he didn’t even look at her. Not a glance. He was busy roaming around the schoolhouse frame and turning on and off those switches he remembered so well.  She hugged and kissed him anyway and went back to cooking.  Honestly, she did not seem to be bothered by it at all. She was happy to see him and thrilled that he was happy.  And there I sat, knot in my stomach, blinded by the diagnosis. Blinded by the lack of engagement that we have been working so darn hard to increase.  I didn’t see my happy son who was being pleasant, even-tempered, and occupying himself with a toy he loved. I was seeing the disability, the developmental delays. The very thing I preach about looking past.

There are moments, days, weeks, that can go by where I am thrilled by Evan’s progress, excited to discuss Williams Syndrome with friends, touched by the smiles that Evan elicits from strangers.  Then there are days like this. When I wake up, filled with hope and expectations of a wonderful day spent with family. And by the end of the day, Evan is in the backseat of the car, scripting away, “It’s learning time!” It’s music time!” and I have to fight back tears. The word defeated feels accurate and awful at the same time.

(As I type this I can hear him singing along with his beloved Signing Time DVD, which also repeats, “music time, signing time, story time,” etc over and over. He does love Rachel. I’ve often said he would run off into the sunset with her or with the ladies from Baby Babble.. but that is another story.)

A quick moment I grabbed

A quick moment I grabbed

Lately I have been having a more difficult time embracing the joys, embracing the progress that I blogged about so recently. I know it is due to the holidays. Due to the stress I was under at work this past month.  Due to the hustle and bustle of non-stop gatherings, entertaining, and changes in schedule that occur for everyone this time of year. I struggled with whether or not to write about it.

Because I do strive to see the positive slant on things.

I do realize how incredibly blessed we are.

But it would be a disservice as a writer (and a deeply sensitive one at that) to ignore the ugly truths that creep into our lives.  To not acknowledge that being a parent of a child with special needs is hard. Capital H. Hiz to the ARD.

Being a parent is Hard.

Being a human being is Hard.

But being honest about it is freeing. Knowing that the Hard is worth it.  Knowing that there are plenty of others out there who are also dealing with the Hard. And we don’t have to pretend that it is easy.

We just have to admit that this happens too:

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and this:

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and this:

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Thank goodness there is also Joy. With a capital J.

We’re Engaged!

Well, we’re married….the engagement happened a good 7 years ago. But it will make sense shortly.

Sorry friends, the whole plan to write one post a week sort of evaporated a long time ago, didn’t it?

Sigh….

But I know you understand.  This working mom thing, is no joke. As I have mentioned before..here and here.

Too busy doing things like this.

Just too busy doing things like this.

But that being said, things are going really really really well.

Evan is loving school. And I think school is loving Evan. (at least that is what they want us to believe to keep us quiet…. 🙂 ) just kidding….sort of.

Seriously, he is just one of those kids that NEEDS school. He thrives on it. Thrives on the interaction, the structure, the constant activity.  Lordy be, the constant need for activity.

“Does he nap?”

“He must be EXHAUSTED when he gets home from school the way he goes goes goes all day!”

Yup. If I had a nickel for every time I heard one of those… Nope, hasn’t napped on a regular basis since he was about two. And when he gets home from school, he is still raring to go. In a more overstimulated-body-is-tired-but-mind-wants-to-keep-moving kind of a way.

But his teachers get him. I was so worried that they wouldn’t. That with the other kids, the two different classrooms, that it would be hard for Evan. Well Pshaw says Evan.

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As usual Mom, I got this!

We had some worries in late August about Evan’s engagement with his peers and the adults in his life. If I am being honest, I was worried that the bubbly, overly social side that we had become quite fond of and accustomed to- was staring to dissipate.  During the summer, his attention span had become much shorter, and his interest in objects had increased while his interest in socializing and engaging with folks seemed to have lost its luster.

I don’t think we even realized it was happening until we received some key advice from a very well regarded doctor who is one of the few experts in Williams Syndrome.  She noticed it right away and encouraged us to go in a different direction with Evan, instead of worrying about any academics or even the fine motor school prep stuff- pour all our efforts into making Evan remember how rewarding it can be to engage with his peers and family.

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My heart was SO full.

I remember feeling kind of lost, like maybe this was just our new reality with Evan. That it would have to be okay if he didn’t want to play with me or even just be with me without being “taught” to do so.

I needed to slow my roll, as my very dear friend Talia would say.  Because it is now November, and I barely even think about it anymore.  Evan will bring toys to me, just because. JUST BECAUSE.  I mean….it’s hard to explain why that is so huge unless you know what it feels like to never have your child do that. He only would bring me things because he needed something or because he wanted me to manipulate the toy in some way.  But now he just wants to share.  He calls for me from the playroom. From his crib. From the front door when I leave in the morning. He asks for me when I am not here. These are all things he was not doing this summer.  He will come over and say “Hi mommy!” and look at me with those eyes and I just melt.

These eyes.

These eyes.

This morning in church, he sat to my left in his stroller. Munching on some veggie straws. I do long for the day when we can have him sit in one of the chairs with us but for now, if we want to participate in any part of the service where Evan is there, the stroller it is.  Two of his favorite songs opened up the service.

“Be Thou My Vision” and “How Great is our God.” I stayed seated while the congregation stood and sang in his direction because I wanted to see if he would sing with me. Instead, he stared at me with those eyes. His eyes twinkled with joy. He would squint every few lines and giggle at the memory of a song we sang when he was just an infant. But for almost every last word of each song, he locked right on my eyes and wouldn’t let go.  I almost broke down in tears because I was so happy.  He wasn’t watching my mouth because he liked the sounds (which he known to do). He was looking at his mama.

Engagement.

Connection.

Things that can’t exactly be taught. But they can be fostered. And foster, gosh darn it, we will continue to do.  Because it is what keeps my tank full. And hopefully, Evan’s as well.

Full. To the brim.

Full. To the brim.

 

 

Finding your inner Orange Rhino

Recently I was randomly selected by a fellow blogger (of whom I greatly admire) to read and review her brand new book, Yell Less, Love More:How the Orange Rhino Mom Stopped Yelling at Her Kids – and How You Can Too!  Needless to say I was geeked to be chosen, being that I am a little bit of a superfan of Sheila McCraith, the original Orange Rhino.

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What is all this Orange Rhino talk you ask? Well here is Sheila’s explanation in her own words, but to sum it up, Orange Rhinos are those of us who are determined to parent well and effectively without resorting to anger and yelling. (as often as we can, while admitting that we are very human and it is WICKED hard.)

Sheila’s book did not disappoint. It is very much like her blog, in that it is honest, raw at times, funny, and downright smart.  She offers up her own accounts of times where she fell victim to her own “stuff” getting in the way of her patience which would then result in yelling.  When you read her book, you feel like you are sitting across the table from a fellow mama friend who is telling you her story in confidence.  But lucky for us, she is sharing it with the world!

Some of the best parts of the book are the tip boxes at the end of each section.  The tips are not only sensible and helpful but they are actually doable! They are not hippie dippie “make love not war” type suggestions but instead, practical, concrete things you can try to avoid blowing up at your children.  The more tools you can store in your toolbox against anger, the better prepared you are!

By far, my favorite part of the book is the section on “why” we yell.  This really hit home.  I thought about times where I snapped at my son, or snapped at one of my students for not following directions.  Just as Sheila mentions, nine times out of ten, I did not snap because of what my child did, but more so because of myself.  I am the one who is tired, emotionally exhausted, frustrated from my work day, suffering from PMS, hungry, you name it, I’ve been it, and it absolutely affects how you react to your children.  Which is why I feel the awful guilt after I do blow up, because I know it is not really because of what others have done, but what I am being affected by in that moment.  Just identifying your triggers, and realizing when you are in a more vulnerable state (not enough sleep, rough day at work, etc.) can help you be prepared for when you feel your face getting hot and your heart starting to race.

Definitely get out there and buy Sheila’s book, Yell Less, Love More, and take the pledge to stop yelling for 30 days.  You might be surprised at how much you learn about yourself through her words.

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Less yelling, more this…..

And……………..

Sheila has given me a copy of her book and a goody bag to give away to a lucky reader!

Check it out!

a Rafflecopter giveaway

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……….

Let His Best Be Enough

The irony is not lost on me. My son has special needs and I have been a special education teacher since 2000. (with a two year break in there after having Evan) I also have my certification to be a Learning Disabilities Teacher Consultant. (the learning consultant on a child study team)

I taught for 11 years before having my son (now three years old) and all of those year were spent with elementary school age children with varying degrees of need.  Whether I wanted to or not, I gained a truckload of patience that I didn’t have prior to being a teacher. I learned how to see the talents in a child, rather than focus on the deficits.  I learned how to pick my battles with oppositional students.  I discovered that a huge part of being an educator is the relationships you develop with the parents of your students. It has never been my strong point, contacting parents and having difficult conversations about their children. I tend to avoid confrontation and I have never felt confident making those difficult phone calls. Even when I know my points are valid.

But I never imagined how different I would feel when I sat down this past spring to write an IEP (Individualized Education Plan) for one of the students I teach.  I hadn’t written one since the months before I delivered Evan.  I typed up a sentence about this particular student, one that described his dependence on his teachers and one of his weaknesses.  After my fingers clicked away, entering the sentence into the system, I found myself feeling uncomfortable. I reread the sentence approximately five times.  I realized that I was trying to imagine what I would feel like if Evan had that sentence written in his IEP.  Would I appreciate the wording? Would I agree with the observation?  Is it necessary?? Here I was wearing my teacher hat, but my mama bear hat was sewn into the brim and there was no stopping her.  And this same feeling occurred with each IEP I wrote. I thought longer about each objective. I scrutinized each comment. Was I being thorough? Is the objective measurable and clear?

I also found myself feeling more guilty when I would become frustrated with one of my students. After giving the same direction numerous times, and day after day needing to give the same reminders, I found myself becoming short and visibly agitated with one of my students. This particular student is not easily ruffled and it didn’t seem to phase him one bit. Which of course led me to feel more guilt. I can remember sitting at my desk eating my lunch and thinking, “Erin, that child is doing the best he can with what he has.” and my next thought was, “God, please let Evan’s teachers realize that about him.”

“Please let him try his best, and let his best be enough for his teachers.”

20140716_123140Boom.

One of those moments where you feel like Oprah should appear in the doorway saying, there it is! Your AHA moment!

I need to listen to that little voice inside me that prayed that Evan’s best would be enough for his teachers at school.  I need to accept Evan’s best efforts as well.  Not to say that I should not have high expectations for him and help him to strive to rise to the occasion.  But when he does, when he is trying his very best to use all he has to accomplish something and it is just not working out the way it is supposed to….I need to realize that it is enough. His effort is enough. HE is enough.  The word combinations he is making today is enough. The attention span that causes him to flit from one activity to the next- it is enough. The sensitive hearing that has increased in the past month, it is enough.

I just don’t want him to lose his spark.

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zest for everything

Please let his teachers fuel the spark. Inspire him to try his best.

And let me do so with my students.

Let my best be enough.

What you can learn from a three year old.

(well, from my three year old, anyway)

1.) Bubbles trump everything. IMG_1922
2.) Being socially open and friendly is a gift. IMG_8963
3.) Listening is a necessity and can be a learned skill.(sometimes we need to admit we are hearing and not listening)IMG_6067
4.) Patience. Patience. Patience.
5.) He CAN reach that phone/toilet paper roll/glass of water/key ring/doorknob/stack of important papers.
6.) On a related note, don’t EVER underestimate him.

Underestimate me?? Pshaw.

Underestimate me?? Pshaw.


7.) Everything can be made better with the right song.
Yup. He's singing.

Yup. He’s singing.


8.) Slow down. When he takes each stair at a painstakingly slow pace, it’s a reminder that it’s okay to slow my roll. Let him turn the light switch on and off a few times. Take your time on the steps. Whatever it is will wait.
9.) Hugs rule. DSC_4041
10.) Birthdays are pretty great. Even when they make mommy a little sad because you are not a little squirt anymore.
Happy Third Birthday Buddy!

Happy Third Birthday Buddy!

There are no words. And that is okay.

I have been thinking a lot lately about how difficult it is to come up with the “right” thing to say when a loved one is facing a tragedy, a difficult time, or is suffering in some way.

As much as I try to see the glass as half full- and I think deep down I believe it still is- bad things continue to happen. They happen every day. It is mostly out of our hands.
Luckily, there is good that happens every day too.
Thank goodness, right?
But as I get older, the tough times keep a rolling for loved ones and for me. I think some of it is just age, the older you get, the older everyone else gets, thus developing more health problems. It might be that when we are younger, we are shielded and protected from the “bad” that exists. When we are young, we don’t have to come up with the “right words” to comfort each other. If we see a friend crying on the playground, we just go up and give our friend a hug. Then we bring them over to play with us.IMG_6944

I think there is much to be learned from how we handled our friends’ tough times as children.
When I lost my dad, I heard so many different things.
“He is in a better place.”
“You will be with him again.”
“This must have happened for a reason, you will know someday.”
“He lived a full and rich life.”
Are those things true? Quite possibly. And maybe 6 months after losing him, those statements would have been easier to hear. But when I was ravaged by the shock, the pain, the awful emptiness of losing a parent- no words were enough. In fact, I barely ever answered the phone. I asked friends to wait to visit. I just couldn’t face the pain in their faces reminding me of my own pain.
There were no words. And that is okay.
When I recently lost another baby, I received an email from a friend who has moved to another state and she wrote: ” I don’t know what to say…..My heart goes out to you, Todd, and Evan.”
I can’t tell you how much I appreciated her message. She admitted that no words really fit the situation. It just sucks, and she wanted to send her love.
There were no words. And that is okay.
Please know that I am not faultless in this department. It is SO hard to sit by while someone suffers and not offer up some type of supportive remark. But I want to share that I have learned it is not the words you choose as much as the offer to sit with someone and mourn/kick rocks/suffer/laugh with them. The text messages I received from friends who just wanted me to know they thought of me that morning. That they wanted to know that if I wanted to yell, I could call them. If I wanted to come over and not talk about anything serious, I could. That they were just there. And that is more than enough. That was so much.
Sometimes there are no words. And that is okay.
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