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There is a quote from the Tony award-winning musical, “Rent,” that has always stuck with me. (after seeing it 20+ times)
(sigh……… to be 19 again….)
A pivotal character dies and following her death, another character says, “you always said how lucky you were that we were all friends…..but it was us baby…..who were the lucky ones….”
When did he get so huge?
This is not going to be a blog post about a tragedy, so please take a deep sigh of relief.
However, today I couldn’t take a deep breath for a few hours because I was so panicked. I found out that not only was Evan’s main teacher going to be different this coming school year, but so will his one-on-one support aide.
I found out late last school year that his main teacher would be taking a position in a different school district. She has been his teacher for a few years and she is simply incredible. She would send me messages from the field trip bus to ease my concerns. She would read any article I sent her, and she would try to incorporate any and all of the suggestions Todd and I have shared. But I completely understood her reasons for moving on, and because his aide was remaining consistent, Todd and I were feeling relatively positive about the upcoming school year.
Then today I find out through the grapevine that his aide has also accepted another job. Again, completely understandable, she is young, she has her whole future ahead of her. She deserves a full-time job with benefits. But nonetheless, when I heard this little bit of news today, it felt like I had been kicked in the stomach.
Summers are not my favorite for a slew of reasons, and in the most recent years, they have become even less savory to me due to Evan’s struggle with the lack of structure and familiarity that the summer months naturally provide/don’t provide. Because of this, we eagerly were awaiting September and the return of some normalcy. Some consistency. Familiarity for Evan and for all of us as a family unit. But let me clarify….. we are not just bummed to lose these two professionals because they are familiar to Evan.
They are INCREDIBLE human beings.
They have not only educated and supported our son, they BELIEVE IN HIM. They see potential when others do not. They know when to push him and when to take a step back. His aide was brand new to our team this past September and at our first IEP meeting in October, she spoke up on his behalf without any prompting. She defended Evan and spoke of how amazing he is.
So this afternoon I did what I tend to do when I panic. I messaged several friends, hoping to hear a glimmer of hope or at least distraction from my worry.
This is what a dear friend wrote back to my flurry of panic: “think of it as two more people that have the privilege to know Evan!”
Enter sound effect of car screeching to a halt in my head. Urrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrt!
The new teacher and the new aide are lucky to get to work with Evan every day. They are being given the privilege to watch and be a large part of his learning process.
What an amazing way to look at it. We have felt so lucky to have such wonderful school staff members connected to us. This continues to be very true.
But it is “us baby, who ARE the lucky ones.” We are so very lucky to have Evan in our lives.
To teach us patience. To help us to listen more closely to every bit of a song. To make us smile ear to ear when he giggles. To teach us to appreciate the smallest accomplishments. To give us perspective. The list goes on.
I love you kiddo. I truly am one of the lucky ones.
I get to be your mom. Every day.
A little while back I posted this blog: Children Will Listen.
I needed to revisit this entry after an incredible moment happened this weekend.
Todd and I got into a spat and we both needed time apart to cool off and regroup. I cozied up in bed with Evan and he played a game on his iPad. Todd came in to join us and he lay on the other side of Evan. We started discussing our argument and sorting things out. We weren’t using loud voices or using foul language. But we certainly weren’t in great spirits.
A few times Evan looked up at us and repeated, “How are you feeling today, Mommy?” or “How are you feeling today, Daddy?” This is not uncommon, however. He is in a phase now where that is one of his favorite go-to questions to ask everyone. We would answer quickly, “I’m okay, buddy,” and continue our conversation.
This is when the magic happened.
Evan broke away from his iPad and pulled Todd’s hand across the bed. He then pulled my hand toward Todd and put our them together with the intent of making us hold hands. Of course we did, and my breath caught in my throat and I felt my eyes get hot with tears.
He started to do a slight bounce- which he does when he is nervous or excited. Todd asked, “Is that better buddy?” To which Evan answered, “Yes.” (recently he has taken up answering “yes,” in this very formal way and I love it)
We have known for a very long time that Evan hears and understands far more than what he expresses out loud. I can remember his first speech therapist saying to me, “He is taking everything in. He is thinking and connecting and remembering, he is just not always expressing it to you.” But even when you know that, you can very easily take it for granted that he is picking up everything you are saying. We, as humans, rely so much on spoken words for approval, reassurance, connection, trust, the list goes on. And even with a child with eyes as deep and full of emotion as Evan’s- it can still be hard to know what he is thinking.
But in that moment it was clear.
He could feel the tension between the two of us. He knew whatever we were discussing was a not a happy moment. He wanted to connect the two of us so we would stop our serious discussion and show him that we were still okay.
Isn’t that what we all seek? To know that we are still okay? In our relationship with our spouse, in our friendships, our jobs- we just want to know that everything is okay.
Of course this is not always possible. We have to help teach our children and students that it is okay for things to not be okay all the time It’s okay for things to stink and for disappointments to happen and for life to throw you curveballs. The Hard is going to happen. How we handle it is up to us.
But in that moment- when Evan pulled our hands together- it really was okay. And I think I needed to know that as much as he did. He didn’t need to use oral language to communicate his need. We knew because he showed us.
He is constantly showing us.
Brene-my author Obi Wan.
“It’s time to show up and be seen.”- Brene’ Brown
2017 was a bit of an s**t show. Forgive the language- that is typically not my jam. Nor is negativity. But truth be told, it was. Breaking 5 bones, multiple medicine changes for Evan, ups and downs for both Todd and I as we dealt with the aftermath of my injuries, constant illnesses for Todd, I lost a dear friend from college, and it was a very tumultuous year for Evan and us as his parents. (I’ll skip over the time I lost both kids at the Discovery Museum. Had a emotional breakdown in the gift shop and Evan laid down in the lobby. WORST parenting day ever……)
Not to mention the two year old tornado that is Melody Jane.
All hail Queen M
As I mentioned in my last post– the second half of this year has been spent trying to help Evan learn how to regulate his emotions, how we as parents can avoid giving him attention for negative choices he makes, accepting our expectations are often very different, and how to love each other through it.
You know focusing on the tough, the hard, accepting the s**t show is not easy for me. I want to see the silver lining at all times. But this year, I found myself sitting in the hard a lot. Asking for help when I needed it. Accepting help when it was offered. A dear friend took Evan once a week while I was healing and fed him dinner and let him play for a few hours at her house. That was monumental. Meal after meal came to our house.
I would tell Todd I needed time to myself. I would lock myself in a room (like um…right now) and sleep, troll Instagram, blog, or just stare at a wall. We lined up respite hours through Performcare. The system worked for us this time! We have an incredible respite provider/babysitter who loves our kids almost as fiercely as we do.
Sitting in the hard, accepting the tough, has helped the “armor” to fall away. It has helped me to see my self worth. To take a deep breath and realize I am not the cause of all that is tough. I am not responsible for all the Hard. I am responsible of how I RESPOND to it.
This brings me back to Brene’. I read this quote earlier this year and it just spoke to me. Jumped off the page and coursed through my veins.
It’s time for 2018. Time to turn 40. Time to take back control over my health. Time to focus on my family, myself, my marriage. Time to show up and be seen. Time to show my children that they can show up and be seen. Plan B might turn into Plan C. Maybe even Plan D.
It can stink, it can be hard. I can say that and not feel guilty. (well, that is a work in progress, let’s be honest) But that side of me that wants so badly to see the silver lining- she will shine brighter when she needs to. Like today.
She is shining today.
Bring it 2018.
“He’s 6 years old, he should be able to walk the block without complaining or flopping.”
“Trick-or-treating should be fun, not stressful.”
“We should be able to walk through Target together and not have to put him in a too-small cart so he doesn’t get away from us”
“Field trips should be such a fun day away from school….”
These thoughts either go through my mind or they cross my lips far too often. Combine our lack of child rearing experience (prior to E), our expectations, our own childhood experiences, and our observations of other children of similar age to Evan. Mix them all together and then line them up against who Evan is…..and how he is wired.
At a town wide Halloween festival. This was the extent of his happiness.
Evan loves to socialize. He loves to say hello and get a response out of strangers and loved ones alike. But…he likes to do that on his own time and on his own terms. So we find ourselves planning an outing- where people familiar to Evan are going to be present. We think, he is going to love this, he loves ____________ (enter name here). We tell Evan about this excursion before we leave. He asks with anticipatory anxiety, over and over, if we can leave, if we can go to the exciting place.
We get to said place, and things will change rapidly. Evan will get a dazed look on his face, and he will push past the familiar people who are so eager to interact with him. He will exhaust every corner of the house, yard, etc- looking for the toys he loves. Or looking for things that make noise, music, anything of that nature. The content, giggly boy that we left the house with is now very reserved, and even agitated. I might suggest to him to go to a room where his favorite snack is, and he pushes my hands away in a huff. He might even drop to the floor.
Then he looks up at me with those sparking blue eyes and says, “Sorry mommy. I’m sorry mommy.”
I know your heart just broke. Mine often does too. But he does say “I’m sorry” for many different reasons and emotions. It is a go-to phrase for him right now when he feels any type of discomfort or confusion.
But in those moments, it feels like he is saying,
“I’m sorry mommy. I’m sorry that I disappointed you. This is not what I expected either.”
He wanted to roam the house freely without abandon. He wanted to talk to people on his own terms, not when they wanted to talk to him. Social cues are foreign to him. Even when explicitly taught, it is tough for him to remember that you walk into someone’s house and greet the host before walking further. Evan often will make a beeline right for the bedrooms. Which of course is quite rude and not appropriate.
But to E- it is the gold mine of fun! Fans, alarm clocks, remotes, you name it.
The past few months have felt very hard but very necessary in my journey as Evan’s mama. I have picked him up off the ground more times than I would like to admit. I have been smacked, ignored, and I have been hugged harder than I have been our whole relationship. I have waited him out for 30 min + when he has refused to do something I asked.
We are closer than we have ever been.
I think this is due to several things.
A huge factor is my dear husband’s involvement. We are a team when it comes to doing what is best for Evan. The summer proved to be one of the toughest for me in all my 39 years. Evan went through a medicine change for his seizures and with that came a language increase but also a huge behavioral increase. Melody is a spirited, amazing, pain in my rear most days. Handling Evan’s struggles were tough when she was screaming that I gave her the wrong color plate. Todd made sure to give me ample opportunities to get out of the house when I needed to. He didn’t get upset or try to fix it when I cried. He was just there. When things kicked up again during the start of the school year- he came to me and said he felt like we needed to be firm and consistent with Evan but we needed to be as positive as possible. Keep things light, avoid getting into a battle with Evan, because the negative is as reinforcing to him as the positive. Actually, it is probably MORE reinforcing. Unfortunately.
One of the biggest shifts for me, has been my understanding of Evan. It grows deeper every day. I am trying really hard to put myself in his shoes. I am swallowing my pride more, and not feeling crappy about it. It is okay to say no to a birthday party because I know it will be super stressful for both of us. Even if that means he misses that peer opportunity. Even if that is one more playdate that won’t be scheduled. The strain that it causes him, and our relationship is not worth it to me.
It is also okay to take risks. Try walking through a grocery store with E without a cart. Try going to a friend’s house that has the motherlode of Fisher Price toys.
Our expectations might not always jive. Our experiences are going to be completely different.
But it is about trying to meet him where he is. While also giving myself a break for not always finding that easy.
Yup, I’ll work on that this week…and next.
And for the rest of my time as Evan’s mama.
“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