Lying in bed with Evan tonight- (for the first time in a long time because of my injuries), I found myself feeling guilty. I kept trying to engage Evan in conversation.
M- “I heard you were practicing for kindergarten graduation. That is so exciting.”
E-“Hi, mommy! How are you? How are you? How are you?”
M-“You get to go up on stage and sing songs. I wonder what songs you get to sing.”
(using declarative sentences instead of constantly questioning him is hard work, but it has come more naturally with time)
E-“V Tech alphabet train, the chug a lug song!”
M-“Hmmm….I don’t know that song, where did you see the alphabet train?
E-“V Tech, V Tech. Hi mommy! How are you?”
This is where the guilt crept in. The guilt because I was feeling dejected. Dejected that I couldn’t get Evan to have a reciprocal conversation with me. Just yesterday I had a conversation with Melody that lasted about 6 or so exchanges before she tired of me.
And what did I feel? a hint of guilt…because I wish I could talk to Evan that way.
I wish he would WANT to talk to me that way.
But maybe he does.
Or maybe more accurately, maybe he is.
He is talking to me the way he needs and wants to. It just doesn’t fit my communication mold.
Right before I got up to let him go to sleep, I started singing,
“Lullaby, and good night.. little Evan….”
The next line as you know is “sleep tightttt”
Evan interjected, “wake uppppppp” and he sat up.
My guilt turned into a wave of warmth.
This kid. Just when I think he isn’t paying one bit of attention to me. He changes the lyrics in the song to communicate to me that “No mommy, I do not want to go to bed right now, stop trying to distract me.”
I am constantly telling people that there is much more than meets the eye with Evan. Sometimes I just need a little kick in the pants to remember that myself.
“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.
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!”
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
Yes, I’m still alive. Barely kicking but alive. And well.
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”
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…
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.
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.
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.
Can’t wait to add a new one with Baby Sister. Stay tuned!
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
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.)
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.
“It’s learning time!……………..It’s music time!………………It’s game time!……………………..”
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.
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
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:
Thank goodness there is also Joy. With a capital J.