Archive of ‘Uncategorized’ category
“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.
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.
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.
Careful the things you say
Children will listen….
So it’s no secret I am a huge Broadway musical fan. Possibly more of a secret is my love of Josh Groban. Recently I attended his concert and was in lala land for a few hours listening to his velvety voice and his witty repartee. What surprised me was how emotional I felt during a few of his songs. One teary moment was due to a connection the song “Bring Him Home” from Les Miserables has with my late father. But the one that really got me was “Children Will Listen” from the Stephen Sondheim musical, “Into the Woods.”
Careful the things you do
Children will see…. and learn….
I have been really struggling lately with Evan’s delayed language development. Don’t get me wrong. He has come LEAPS and bounds from a few years ago. He is speaking in short phrases, and he has the capability to speak in longer sentences but it is hard for him to find the right grammatical combination. So he chooses shorter chunks because it is easier and more effective. A few years ago I would never have thought he could ask me clearly for a certain food, or tell me that he needs to use the potty, or tell me that Melody is funny.
Alas….the perspective of looking back and realizing how far he has come does not come into play most days. Most days are filled with moments where I feel my stomach twist because I hear a child ask his mom, “Does Evan talk mom? He barely says anything.” Moments where I watch an adult struggle to connect with Evan because he keeps saying “Hi!” and repeating the same phrase over and over.
But something really struck me at that outdoor concert the other night. I had a long conversation with my dear friend about Evan and his progress, challenges, strengths. And she said something to the effect of, just because his expressive language is delayed, he UNDERSTANDS. He is listening to everything. She mentioned how she was trying to engage him in a conversation about his time at school that day, and he just kept repeating the same thing but she said his eyes said a different story.
Children may not obey, but children will listen
Children will look to you for which way to turn…
And she was so right.
He is always listening.
(Well, maybe not when he is on his Ipad and he doesn’t want to come to dinner.)
But children are always listening.
For better or worse.
Think back to your childhood. The memories you have of biting words a peer said to you on the playground.
A phrase your parent uttered in a moment of anger and frustration that you still hold on to 30 years later.
After a tussle with Mommy over leaving the speech therapist’s office
Look at his eyes.
They speak volumes when the words couldn’t come.
We went to the zoo recently and I was not looking forward to it because in the past, it has been hard for Evan to connect with the animals because of the distance. He just didn’t seem to be a “zoo kid.”
But then this happened:
And not the rough petting he does with Zoey, our very patient choc lab mix. He was soft petting and smiling and quietly connecting with this goat.
Just taking it all in. He didn’t want to leave. The complete opposite from years past where he would just run from trash can to trash can to flip the lid or play with the water fountains.
We asked him the goat’s name and he said, “Goaty the Goat!”
I didn’t think the zoo would matter to him.
Adults need to listen too.
Children will see….
Guide them, but step away
Children will glisten…..
I’m going to try harder, buddy.
To speak more carefully.
To listen to what is not said.
To let you glisten.
I think one would be hard pressed to find a person who does not like music. I can’t imagine having someone say to me, “Music? Nah, not for me.”
Everyone finds a need for music in some way. It can relax you, excite you. Remind you of treasured memories. Ignite passion. Soothe frustration. Become a hobby. Even a profession.
If you have been reading for a while, you know Evan has Williams Syndrome, and in the spirit of Williams Syndrome Awareness month, if you are not familiar with this condition, please read about it here. Because of the gene deletion on the seventh chromosome, Evan has some developmental delays. One of those that is more pronounced in Evan than in most individuals with WS, is in the area of language. Receptively, Evan is very aware. As one of his therapists says, “he is an observer.” He takes it all in, and his vocabulary is much larger than he lets on. He reads on a first grade level and loves letters and words. However, for some reason, he chooses to speak mostly in three word phrases. I bring this up only to emphasize why music is so crucial in our house.
Music is as important to our relationship with Evan as pretty much every other aspect of parenting. That might sound crazy but I truly believe it.
If Evan has a tough time transitioning from one activity to another, we play music.
If Evan is stressed out after school and can barely say two words to me, we play music.
If Evan is not eating his dinner, we play music.
Different songs, genres, musicians for different circumstances.
Enter The Laurie Berkner Band.
This children’s music group has become more than just a fun way to fill some time.
He will be totally dysregulated after school- arms flailing around, grabbing at every remote or electronic device he can find. He seeks something familiar to calm him down after a full day of expectations, rules, and activities that are tough for him. Then I put on the Laurie Berkner Band cd or You Tube channel and his whole body relaxes. His arms and hands slowly start to be less impulsive and his eyes lock with mine while he sings along to the song.
“Cuddle you, Mommy?”
He will go from kicking and walking around aimlessly to curling up in his bed with me, singing along. Then the really amazing part might happen. He will be singing along with the song and start to change the lyrics to talk about his day, or what he would like to be doing. Or he will just change it up and use different animal sounds. Never missing a beat. Staying in tune.
Most importantly, he connects more freely with us. Evan shares more of himself when music is involved. The Laurie Berkner Band has been a Godsend.
So when this happened……..Evan’s world burst into a million rainbows and unicorns. And so did mine.
Evan meets his muse, Laurie Berkner
We had the opportunity to see the band in concert this past weekend. It was Evan’s first concert, and I couldn’t be happier that it was LBB. He stood off to the side of the stage bouncing occasionally, not singing much, but intently watching. He would utter the occasional, “Cuddle you, Laurie Berkner.”
I expected it would be a bit overwhelming for him, and it was. He listens to these songs and gazes at Laurie’s face in her videos on an almost daily basis. I find myself justifying the amount he watches/listens by thinking, “It’s better than mindless games on the I pad, right?” Don’t answer that. I know it’s better. 🙂
Following the show we had the incredible opportunity to do a meet and greet with Laurie and the members of her band. I have to admit, there was this tiny part of me that worried she wouldn’t live up to Evan’s expectations, and honestly….mine. I built up how awesome this woman must be because of how influential her music has been on Evan’s communication and level of engagement in the past year. I was worried also that Evan would clam up a bit or not be as excited as we expected. My expectations were completely unreasonable but I had them anyway.
Well folks, my expectations were exceeded.
Just look at these pictures:
After holding his hands and bouncing up and down for a minute or so, she scooped him right up into her lap. She sensed his high activity level and spoke softly and calmly the whole time. He leaned against her and relaxed in a way he rarely does with anyone. He definitely is a people lover, but he typically flits from person to person. With Laurie, he would have stayed in her lap for the night.
Look at his face. The gaze. Phew….
When his time was nearing an end, it was clear Evan was not ready to hop down. Without any prompting from me, she said something like, “Ok Evan, I am going to put you down really gently, ready, let’s count, one, two, three…..” and she slowly put him down.
Giving him warning, counting with him, I mean…..Melt.
I know this isn’t her first rodeo. She has her own beautiful daughter and she has been in the children’s music biz for years. But I watched her interact with child after child. I watched a young adult with a disability become so excited that he mouthed her arm, almost biting her a bit. She didn’t even flinch.
I walked away from the experience sobbing. Like, ugly, can’t catch your breath, you might scare someone sobbing. I was so overwhelmed with her humanity, her patience, and most of all, I was overwhelmed watching my little dude meet his idol. Sometimes I really wish I could get into his little head and know what he is thinking since he doesn’t really articulate the way I wish he would.
But no words were necessary this time.
Check out their You Tube Channel if you get a chance! https://www.youtube.com/user/TheLaurieBerknerBand
I pray she will continue to be fierce.
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.
I love holidays.
As a child, I would have countdown calendars, I would beg my mom to put out the decorations weeks and weeks ahead.
I would be giddy with excitement and riddled with anticipation for the month prior.
Will the Easter Bunny come? How many eggs will I find? What songs will we sing at church on Christmas Eve? What time am I allowed to be up Christmas morning?
During pregnancy and in the early years with parenthood, I continued to be excited at the prospect of including our children in our traditions. Our family meals, board games, gift opening, egg hunts, the list goes on.
Unfortunately, I still have a fondness for holidays but I no longer am riddled with excitement for weeks prior.
Instead, I find myself dreading the family meals, worrying about gift time, anxious about family gatherings.
Holidays are a time where I find myself seeing the diagnosis instead of seeing my son.
A time where he is surrounded by cousins, children who are the same age or younger, and they are doing and saying things far beyond his development. It used to upset me more because it would be hard for ME to handle but I always thought Evan was doing fine with it. He would play with the electronic toys, happily flitting from one to the next, not worrying about his family members, happy to play and do his own thing.
But that has changed.
It seems now Evan is more aware of his environment. More aware of his “sticking out.”
Not in the same way that I might feel like I don’t fit into a group. More that he does not understand why everyone is running around playing pretend games. He doesn’t understand why we seem so adamant that he do an egg hunt. I can just see in his eyes the thought, “Why are mommy and daddy so upset that I don’t want to do this? What is the big deal? I just want to play with the toys that are easy and fun for me. They make me happy. Let me be happy.”
Damn it. That is HARD.
Choosing when to include your child because you think it is important for him, or is it because it is important for YOU?
Because of Evan’s delayed speech development, we don’t always know what he is thinking or feeling. He didn’t say he didn’t want to do the egg hunt. He just kept making a bee line for the door and requesting to go back in the house. But later on at the party, I knew exactly what he was thinking and feeling. I caught his gaze from across the room. He was playing with some electronic toy and staring off into space and I could see it written all over his face. He was exhausted and tired from the noise, the rapid movements, the conversations all around him that he didn’t feel he could or should be a part of. I went over to him, sat down next to him and he crawled into my lap, “Cuddle you, mommy.”
My heart sank but I also felt this strange relief.
Relief because he told me what he needed. He needed comfort, closeness, a sense of familiarity in a dynamic environment that overwhelmed him.
Once again, through a difficult situation, a little light shines.
“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen
Holidays will continue to be tough sometimes.
Holidays will continue to have joy sometimes.
Thank goodness for cracks.
Thank goodness for cuddles.
I think if I was a little more tech savvy, I could search my past blog posts and find the ones where I have quoted one of my closest friends, Talia, when she says, “You need to slow your roll!” I can remember her using that phrase back when we started teaching together 10+ years ago.
She is very right.
I do need to slow my roll.
This guy deserves that. He deserves much more of course but at the very least he deserves a mama who can practice what she preaches. I often use the phrase, “Presume Competence.” and I relate it to Evan and his ability to rise to the occasion when you give him the chance.
So why is it so hard for me to remember that myself?
In the past few months, he has started drinking out of an open cup.
He has moved into his big boy room.
Evan bouncing on his bed with his Uncle Joe
And he is potty trained.
Yes, I sure did say that.
Potty trained. (and I’m choosing not put underwear pictures, because I already take a huge risk putting his pictures out there, but I don’t want to go that far…)
My proud big boy
Ok…so he is not fully potty trained. We are not night training right now and probably won’t for a little while. But he is WAY further along in the process than I ever would have imagined. We implemented the popular three day potty training method (a loose version) a little over a week ago. It was hard. HARD. Three of the hardest days I have had in a long time. But…..fast forward a week. He has had only a handful of accidents. None at school, and he has gone several days in a row without any. After being in diapers only for for four years. The biggest accomplishment was staying dry through a very stressful CHOP (Children’s Hospital of PA) visit this past week. I totally planned to put a pull-up on him before he went through some testing and a very nerve wracking doctor’s visit, but he initiated potty trips while we were there, so I decided to PRESUME COMPETENCE gosh darn it and let him wear his big boy underwear and surprise me.
And of course he did.
This time last week I was sitting at home writing an email to Evan’s ESY teachers preparing them for the possibility of accidents, and letting them know how the weekend had went. I sent in multiple pairs of underwear, extra clothes, the works. Fully expecting that he would come home in a different outfit. I was a little bit of a nervous wreck all Monday morning. Messaging my WS mama friends asking them if it was too much to expect. Could he make it through a few hours at school without an accident? and maybe I was expecting too much too fast…
Fast forward to Thursday, after four days of school. Every day his very kind and accommodating teacher (who knows I am a mama that needs reassurance) would email me a little update saying, “Yay! No accidents, and a bm on the potty!!!”
That is basically Evan’s way of saying, “Mom, seriously….slow your roll. I’m not perfect, as we have already discussed, but I am trying my hardest. Let me try.”
Deep breath….I will buddy, I promise. I owe you that. xoxo
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!
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.
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.
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.
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?
But I know you understand. This working mom thing, is no joke. As I have mentioned before..here and here.
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.
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.
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.
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.
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.
(well, from my three year old, anyway)
1.) Bubbles trump everything.
2.) Being socially open and friendly is a gift.
3.) Listening is a necessity and can be a learned skill.(sometimes we need to admit we are hearing and not listening)
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.
7.) Everything can be made better with the right song.
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.
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!
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.
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.