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.
“Cuddle you, Mommy.”
“Hi Mommy! Hi Daddy! Hi Mommy!”
“I want to sit, Mommy.” (meaning he wants to sit on my lap)
These phrases are said on a daily basis. Some days he greets me about two hundred times. Nope, not exaggerating.
Bundled up and ready to handle the snow for about 3 minutes
You know how you have those memories of conversations that always stick with you? You can remember where you sat, what you thought, and maybe even what you were wearing. I have a lot of those. Mind you, I can’t find my phone or keys most days but I remember certain conversations like they happened two minutes ago.
Anyway, I recall having a Facebook “conversation” with an old high school friend. I believe it started after I posted this entry . I was reveling in the excitement of hearing Evan say my name for the first time on his own without a model. She was complimenting my blog and then she followed it with something like, “Soon he will be saying your name over and over and you’ll need him to take a break!”
So she was partially spot on.
He does say my name. A LOT.
He says it sometimes just to maintain connection/engagement with me. We figured out that sometimes he is so excited to be sharing something with us, but he can’t put it into words so he just keeps greeting us, because he knows it will receive a response and he wants to make sure we are still “with him.” It’s his way of checking in.
So my friend was 110% correct about the repeating.
But I do not need him to take a break.
Believe me, there are things he does that make me weary. Such as turning on and off the baby swing, or asking to watching “funny puppies” on You Tube. But when it comes to language and communication, I still get excited when he remembers to check in or he asks me to “cuddle you.” (which of course means, please cuddle with him.)
Evan’s language is more delayed than the average 4.5 year old with Williams Syndrome. He has a large vocabulary, and he understands SO many words. But he speaks mostly in two or three word phrases and some longer ones that he uses to express is needs.
Again, I forget how delayed he is until I stop comparing Evan to Evan and I compare him to another child. We were at the dentist’s office recently and there was a little girl who was very excited to share every toy with her mom. Her mom looked very tired and overwhelmed from whatever her day entailed. Her daughter would jump in her face, show her a toy and babble on about all the details. The mom was half listening and tolerating her daughter but you could tell she just needed a little quiet.
And I totally understood.
Because I thought to myself, “Wow, at Evan’s age he should be sharing toys with me and telling me about them.” That mom doesn’t realize how awesome it is that her little girl is speaking in long sentences and sharing experiences with her.
Then my mind went to a weird, unfamiliar place. I thought about Melody.
Just hanging out
I immediately felt guilt and wonder. I was pondering if my little girl would come up to me in a doctor’s office one day and babble on about toys until I ask her to go play by herself because my mind needs a break. I felt a slight excitement at that prospect with weirdness and guilt mixed in.
I looked at my boy, playing with the musical toys and repeating, “I want to play!” and “toys!” with glee.
We have celebrated and fought for every one of Evan’s milestones. I wouldn’t be human if I didn’t hope that there wouldn’t be as big a fight for Melody. But at the same time, I wouldn’t change what we have had with Evan for the world.
The juxtaposition of those two feelings is kind of exquisite.
And I still love hearing….”Hi Mommy!” two hundred times a day.
Well hello there.
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.
Thus, I say, “2016……yes, please.”
Siblings, a dream that became a reality
Baby girl….I’m ready to meet you.
39 weeks tomorrow. I woke up today with a weird sort of peace and calm. And that has been hard to find in the last month or so. With the heat of the summer, daily bouts of contractions, Evan’s CHOP overnight stay, some potty training regression, anxieties about the baby/transitional period to come- it has just been a different last 5 weeks than it was before Evan was born. I think back to that last month before his birth (where I took entirely too long of a maternity leave before he was born) I took long walks each day, bounced on my yoga ball, wrote my unborn baby letters, I read baby blogs at length, and just was so wide eyed and excited in general. I didn’t have a lot of false labor, and the weather was kind to me. I just re-read this blog I wrote the night before Evan was born, 5-26-2011, and I smiled at my naivete.
I also re-read this entry that I wrote to all the different mamas that I have been in the last 4 years. Dear Mama
Phew. No wonder I am feeling so differently this time. It has been a wild ride the last five years since we lost my Dad and found out we were pregnant with a future Evan.
This guy made me a mama….
One thing that I do not handle well is uncertainty. It’s not in my DNA to find peace in the unknown, or to accept that I do not have control over everything. But….I have been working REALLY hard at it for a long time. Just because it is hard for me, doesn’t mean I can’t try. So this morning, I wake up, feeling a little more at peace, and very very VERY ready to meet this little girl. I also am striving to find acceptance of the unknown. Not knowing who she will be. Not knowing if she will also have special needs or developmental delays, or the like. Not knowing if the labor will last 2 days, 2 hours, or 30 min. Will she love her brother with all her heart? Will Evan be able to break away from his toys and music to love her right back? Can I sit in the quiet moments with this little girl and breathe deep knowing that no matter what happens…..It WILL be okay.
Because when I read back to Evan’s diagnosis story. I remember those fears, those questions, those unknowns that were suffocating, blanketing, all encompassing. And I sit here, over three years later, with another child in my belly- and it HAS been okay. Evan is potty trained (going through a little regression but we’re on it), he’s going to school full time, he is loved by classmates and teachers alike, he runs up to me when he sees me after a day of school saying mommy, mommy! He is starting to read sight words, climbing into his car seat himself, finally spitting after he brushes his teeth! And we are about to have another child after sending two babies to Heaven.
I still don’t know what will come in the next day, week, year, decade. And that is not easy for me. I’d love it if God would just send me a little date planner and let me know when each milestone will happen, when she’ll sleep through the night, when Todd and I can go out on a date again (where I don’t feel like I am going to fall asleep after two min), when Evan will be invited on his first official school playdate…….
But that’s not how it works.
Instead we all plow through our days and lives doing the best we can as things happen. The amazing, the excruciating, the beautiful, and the mundane.
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.)
This face helps me to keep trying…
Hello my lovely, supportive, and probably bored readers. I am very sorry that I have not been the diligent writer that I was last year. I can give you numerous excuses but the biggest being that I have been falling asleep before 9 many nights and that was my prime writing time. I do want to write a separate post about this, but the big news is that our household will be expanding to 4 in September.
I’m currently 18 weeks and doing very well. Another time I will try to write about how different this pregnancy is, given our history and given we have this ball of boundless energy to contend with this time around:
Watch out! (Evan almost 4)
What I wanted to address in this post is this scenario, that I truly believe sums up most days of my life.
Have you ever entered a grocery store, thinking, okay…all I have to get are tortilla chips and salsa, so I will just grab a hand held basket and run to that aisle. Then you find yourself remembering you need milk, canned beans, and some produce that you ran out of? So you think, I can fit that in my handheld basket, no problem. It’s not that long of a trip around the store. But by the time you get to the register, your forearm is bruised from how heavy your basket is. And you think, jeez if I had just taken the time to get the bigger cart……
If that has never happened to you, then maybe this won’t make as much sense to you. But I have done that NUMEROUS times, especially when I was single and living alone. I always had the mindset that it would be silly for me to push around this big cart when I was only shopping for myself. And I almost always regretted that ridiculous assumption….
The larger picture is that this habit of putting too much into a small basket is a problem that I face with my life’s daily activities. (I apologize to my close friends who I have already shared this with) I often will look at my calendar and think, sure! We can fit in a hippotherapy session
A little snow doesn’t stop hippotherapy!
two hours before a baptism party that is 45 minutes away. I can squeeze in a hair appointment and make it home to relieve my mom by the time I promised. (and I walk in 30 min late, every stinking time) I’ll think, Evan really deserves some outside time with me, I can fit in a walk with a playground run before I make dinner (and after working 7 hours)
Nine times out of ten, I find myself at the end of one of these too small basket days, feeling very harried, very disappointed in how the activities panned out, and just plain exhausted. My husband and I both like to travel, hike, take day trips, etc but we will plan a weekend where there isn’t one moment free and at the end we’ll feel like we need a weekend to decompress from our weekend.
Sometimes I thrive on this activity, the busyness can be exhilarating, and just what I need. Other times (and more often these days), when too many things are scheduled in a day, the actual activities will never live up to the expectation surrounding them because they just plain can’t! Because we are too tired to enjoy them or because we are busy getting stressed thinking of preparing for the next place we have to be.
Today found both little E and I feeling very under the weather. I think I have a pretty bad sinus infection and he has the beginnings of a head cold or the same thing. Of course being pregnant, the only real remedies available are the neti pot, humidifier and rest.
We were supposed to attend a family celebration this afternoon and my very wise husband talked me out of it, saying, you don’t feel well right? And Evan doesn’t feel well right?…..and the logic was too clear for me to argue. Even though the guilt monster crept in as it typically does.
This afternoon Evan (who you know has not taken a proper nap since he was 2) slept for almost 4 hours.
I slept for two, and then read a fluffy novel that had nothing to do with work , therapy, how to be a better parent, etc. It was just to pass the time and help me to stay still.
I chose the bigger cart this afternoon, and I am much better for it. I think my boys are too. I just need to learn to do this when I do not have a stuffy nose causing me to make the decision. :-/
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.
There are some odd things we do as parents of littles with special needs. I guess they aren’t odd to us, but they might be to others.
Imagine big heaving breaths with this face. Repeat.
One of those things that I find myself doing lately is celebrating the typical. Specifically, celebrating when my son (who is 3.5 and has Williams Syndrome) has an all out, house shaking tantrum. Now let me preface this by saying, I do not “enjoy” his tantrums. I get just as frustrated as the next mama who doesn’t like to a. see her child cry, and b. wants him to get his act together and realize the world is not ending because he is putting pants on.
I celebrate that he is being a three year old. That he is expressing his frustration over whatever is bugging him at that moment. Lately it has been wearing clothing. He acts as though you are putting acid covered knives on him when you get him dressed. Have you seen this? It is pretty darn accurate. Albeit slightly creepy but so accurate nonetheless.
Another tantrum he likes to throw is The-I-Want-Dinner/Breakfast/Snack-Now tantrum. I get home from work, and he meets me at the playroom door and his arms go up lovingly and the first thing he says is, “Dinner?” (at 4:45 pm mind you…..) And then sometimes for the next 45 minutes as I try to unpack from the day, and get dinner ready, he will climb into his chair in the dining room and whine and cry for dinner that is taking way too long for his liking.
Yes, my shoulders might tense up in frustration because I wish he would just understand that things take time, and that mommy can’t have everything he wants for him immediately…
I realize, my son is doing something that most toddler-preschoolers do. Not because he has a genetic condition. Not because he can’t express himself otherwise due to language delays.
Just because he is young, and because that is what they do from time to time.
And sometimes, it is nice to experience things that happen just because. They do not happen because of a label, a diagnosis, or a delay.
I hate pants.
I better go prepare myself, time to get him dressed. Wish me luck.
“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.