Tuesday, August 27, 2013

Dear Teacher

Elijah started preschool today. We had a truly nightmare experience at the first school he was placed at, where I found myself constantly wondering if there was a hidden camera and I was being "Punked" somehow. So, Mama Bear roared to life and I got my baby bear a new school, with a better suited program. The school itself is a stark contrast to the school he was originally placed at. Here, the office staff is lovely, the Assistant Principal invited me into his office to discuss what would be best for Elijah, and the therapists who will be providing his services, actually called me to tell me when they will be seeing him!

However, today didn't feel great. The teacher that I met on the tour last year is gone, and along with her, the program I thought was so well suited for Elijah. The teacher who has taken her place is young and green, but full of energy and creativity. I'm not totally ready to write her off, but I am very disappointed in two things: 1) I don't agree with the program. It doesn't feel developmentally appropriate to me, and there is no time in the classroom to be working on his Imaginative play skills, which is something he is lacking and I know would improve with peer modeling. 2) She is already underestimating my child. Sigh.

I received a packet of information and most of it is about trying to get to know my child better. At the bottom of one of the sheets, it says, "Please tell me, in one million words or less, if there is anything else I should know about your child. Feel free to brag! Use the back (of this page) if you need to." So, I thought I'd take her up on it.

In well less than one million words, here's my version of "Dear Teacher":

My child is frequently under-estimated. Elijah doesn't yet have words to communicate what he knows, and because of this many people assume he does not understand. That is inaccurate- he knows much more than he lets onto at first. Today, after school, you asked if we had considered placing him in the Preschool Intense class environment (for moderate to severely disabled children). This shows me that already-on his very first day of school- you have underestimated his abilities.

My son, Elijah, has Down syndrome. I don't expect you to be an expert on every special need that exists in your classroom, but because of my son's diagnosis, I have become an expert on him. Let me tell you a little about what this means: Down syndrome is a mild to moderate cognitive delay brought on by the presence of an extra 21st chromosome in each of Elijah's cells. The extra genetic material causes a few other things that add challenges to his abilities- things like delayed speech and gross motor skills. Despite the extra challenges that Elijah faces, he is motivated to learn and explore, and he slowly, but surely, is conquering each of these hurdles. He needs some modifications for learning, but mostly, he just needs people who believe in him.

Elijah has a great sense of humor, seems intuitive to others' feelings, is affectionate, bright, and adores his older brother. He has an almost Superpower ability to make people fall madly in love with him. He also learns things a little more slowly, but this pace makes our family slow down and take a deep breath more often than we would have before. He's taught me not to ever take for granted what comes easily to me, and shown me that persistence and perseverance done with a smile, conquers almost all. I sometimes wonder if he will teach me more than I'll ever have the chance to teach him.

I look forward to partnering with you in Elijah's education. I realize that I can come across pretty tough at times, but I just want my son to be seen and accepted for who he is and not seen for just his diagnosis. I want him to have opportunities equal to other children his age, and I want him to learn the skills he needs to accomplish his future dreams. I want what every parent wants.

For now, I am his voice.


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Sunday, August 25, 2013

First Grade

First Grade. It sounds so...Big. Christian started first grade last Monday and so far, so good (Unlike last year when "Day Four" happened.) Here are some of Christian's statements from the first week of first grade:

Monday: The day is longer and there is no free choice. :( (Independent play in the classroom.) I got a stamp for good behavior! I lost my lunch box.

Tuesday: We had art today and we worked on drawing our faces. I'm not finished with mine yet. I got a stamp for good behavior! Mom, I'm so, so sorry, but I lost my lunch box.

Wednesday: We got to go to the library today and check out a book!!!! I got a Lego Star Wars book!! I got a stamp for good behavior and you are going to be so happy- I remembered my lunch box today! (Me: Where's your water bottle? Him: Oh.)

Thursday: Guess what?! We got to do some Free Choice today and I got another stamp! I lost my lunch box. Again. I'm really so sorry.

Friday: I lost my backpack. It's just GONE! (It wasn't gone.)

Sooooo....short of the fact that I'm going to have to staple his lunch box to his body next week, I think things went pretty well. And the good news is that when you lose your lunch box on the very first day of school, there is NOTHING ELSE at the Lost and Found. Nothing. Except your son's lunch box, placed lovingly in front the empty coat rack. With his name on the front. Yes, everyone: Only this Christian kid with the Flames Lunch Box has needed to use the Lost and Found this week.

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My handsome First Grader, who gets bigger everyday, but still wants his pet "Leo" in the picture.

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Christian and one of his friends from school- they were so happy to see each other, even though they aren't in the same class this year.

Friday, August 23, 2013

I Love You The Purplest

Well, NOW I can't sleep. I'm filled with a mixture of emotions, but strangely...excitement (?!?) is one of them. That doesn't sound crazy just yet because I haven't told you why.

Tonight, I got a private message from a friend I haven't seen in awhile asking if I could talk. My instinct flashers started going off. I think I know what she might say. Then it came, This might sound weird, but do you have a child with Down syndrome? Chills. Then the real news, We just found out our baby has Down syndrome. I insisted on talking on the phone. I wanted, no needed, her to hear my voice on this one. And I couldn't wait to say it:

It is going to be okay. I promise.

My friend and her husband are in the midst of the heartbreak of the loss of expectations. I know this heartbreak well, because I lived through it too. The lack of understanding of what it all really means- for the baby? For a sibling? For us as a couple? For us individually? It is completely overwhelming. No parent ever wants their child to have to face greater challenges. But, this is what I told my friend: Nothing in this world has taught me more or brought me more joy than having my whole world turned upside down by having Elijah. I'm not saying I love him more than Christian- because I don't. What I understand, and every Mother of more than one child understands, is that you love each child a little differently. Christian keeps me on my toes- I have to be super consistent with him or he will take advantage. He's strong willed, smart, creative, independent and active. Elijah keeps life in perspective for me- things don't come easily for him, but he manages to handle it with grace- sometimes with a smile and sometimes with a complete melt down. He's funny, intuitive to others' feelings, affectionate, bright, and has the superpower gift of making everyone around him fall in love with him.

I love each of my boys differently, yet equally. It reminds me of a beautiful children's book that a friend gave me. In the book, one boy asks his Mom if she loves him best? And she responds that she loves him like the crackle of a blazing fire, like a horse dashing through the tall grass, like a sunrise just breaking the horizon--Like the color red. To her other son, she says that she loves him like the calm of the low tide ocean, like a song as it softens before a swell, like the sunset as it fades from the sky--Like the color blue.
The author never says it, except for in the title, but the beauty is in the color that is made from her loving them both. The mixing of the red and the blue. The purple. I Love You the Purplest.

I know my friend is grieving a loss- because she is not getting the baby she expected, but I'm strangely feeling a little excited for them. I'm not sure I'm going to be able to put it into words perfectly, but to say that it's not the sum of the things that Doctors say it is, and it's not the sum of things Google says it is, it's the unexpected...and along with that comes a whole new world. Sure, there are times where I'd like to chuck "this whole new world" out the F'ing window. But, most of the time, I'm blessed by the people who came into my life as a result of having Elijah. I'm grateful for the times where I'm required to slow down, because he just doesn't go that fast...where in slowing down, I also smell the flowers and notice the birds and take an extra deep breath.

I talked to my friend on the phone for a long time, and I hope I gave her some comfort. I hope I gave her a sense of balance- because the medical profession, and the text books and the internet searches don't give the balance of the whole picture. To those of us who live this everyday, we know that the whole picture is still a Family- with ups and downs and wins and losses. It's not what the ignorant or uneducated ones think and it's not what the intellects and highly educated ones think. It's just different. Like purple.

At some point, there was just red, blue and yellow. But then someone found that when they mixed the colors together, they got something different- yet equally beautiful. Maybe that's why I'm excited for my friend. Because she's getting something equally beautiful, just different.

Different doesn't mean better or worse. It means unlike what you had before. So, to my sweet, but scared friend, I want to say again: Try not to worry too much. It is going to be okay. I promise.

You will love her the purplest.






Sunday, August 11, 2013

The Whoosh

I have a kid with Down syndrome. So what? Everyone who is in my life knows that by now, and by being around us they know what that really means. Which, frankly, isn't a whole lot. It means he's doing things more slowly, can't communicate as well as other kids his age, yada yada. This post isn't about that.

When I'm in adult social situations, around people I've never met before, having a kid with Down syndrome becomes more complicated. It's complicated because most people know nothing about Down syndrome and what they think they know is usually extremely outdated or just plain, wrong. So, I usually don't mention my youngest son's diagnosis when I'm out and about in these new people situations. Let me be clear, I am NOT embarrassed about it. I just can't stand the feeling of all of the air being sucked out of the room with a giant "Whoosh" when it does get mentioned. Then, I have to quickly assure them that I wasn't given a prison sentence with my child and that there are many things about it that are positive (being faced with my own ego, taking life a little slower, celebrating the milestones more, gaining perspective, etc.) But, it's really annoying to have to do this and most of the time I just want to have a cocktail and enjoy the adult conversation.

I was recently out with a group of Moms for a Girls Night Out at a restaurant. These Moms and I all have one thing in common: We all have a child with Down syndrome. The waiter was coming back and forth bringing us things and engaging in flirty, clever quips with us. Once we all arrived, he asked if we were celebrating something special. A few responded that No, we were just out to get away from the kids. Then one friend says, "Well, actually"... and I tensed up. Here it comes. "We all have a child with Down syndrome!" Whoosh!! And there goes the air. He covered well, but he didn't respond with the same jovial nature he had responded on all previous exchanges.

There are times when I'm out in a new social situation where the conversation is long enough, relevant enough or deep enough that it warrants me sharing a little more about my life. But, I always hate that first moment- the moment before they realize that it's all good. I was at a friend's birthday party, and was having a fun and fascinating conversation, wine glass in hand, with a group of people- a mix of a couple friends and a couple of people new to me. The conversation turned to kids and parenting. The way the conversation was going, I was either going to have to change the subject or mention my son's diagnosis, so I said something along the lines of, "My youngest son is 3 and just started walking. He has Down syndrome, so it has taken him a little longer to "get there". The guy I was talking to, immediately lost his smile and shifted to his serious face. One of my friends quickly saved the moment by saying, "Jen has a great blog where she writes about her experiences with her kids." Up walks a woman I don't know, who hears the tail end of this statement, and she practically shouts, "You're a MOMMY BLOGGER??!!"
Me: Umm...yeah, I guess so.
Her: I LOVE MOMMY BLOGS!!
My friend: (introducing us) So-and-so this is Jen
Her: OMG!! You're Jen?? Of "Jen's List"????!!!!
Me. No!! Oh God NO. I mean...I've gotta hand it to Jen of Jen's list, but that is definitely not me. No, I just write about....my kids.
I decide that there is no way I'm bringing up the meat of what I write about in my blog. Based on how loud and how enthusiastic she was, I didn't see THAT conversation going in any direction that would have been good for me.

Sometimes I wonder if I like the mystery. Like I've got a good "secret" to share- something that's just a little bit different from everyone else. Almost everyone has a story. And like every good story, it takes time to unfold. I have friends who tragically lost their spouses, friends whose parents were taken from them at a young age, and even recently learned that a friend ended up in a cult called the Folkolare because she didn't have enough extra curricular activities. These are things you just don't blurt out upon first meeting someone. Because if you do, you will be met with the Whoosh of air leaving the room. And those of us who have "stories"? We don't really want to have to do damage control over the perception of our lives.

So, what should you start off with in a conversation with someone new? I think I'll try opening with this one, "One time, I accidentally asked a woman if she was drag queen."

Now, "the Whoosh" that accompanies that is a fun one to explain away...

Friday, August 9, 2013

Yeah. Yeah.

I procrastinate when I get overwhelmed. The school year is beginning to loom large in front of me and it's time to face it head on. I finally, finally (after many weeks of procrastination) filed all of the necessary paperwork to begin Due Process with Los Angeles Unified School District (LAUSD). I'm filing to get a one on one aide for Elijah. My main reasoning for needing an aide was that he wasn't walking yet. Well, homeboy is well on his way to making me look like a big, fat liar. Unfortunately (for LAUSD), he still is going to need an aide- at least for this school year. Elijah is getting stronger and more motivated to walk each day, and yet it's a new skill. He still sits after about every 10-20 feet- just for a second or two and then gets back up and carries on. But, he's going to need that extra support. Not to mention needing someone to keep an eye on the hair pulling behavior he has. However, thanks to my awesomeness rather unusual discipline methods, I'm beginning to think he is understanding that hair pulling is NO BUENO!! He hasn't pulled anyone's hair recently, including his favorite victim- Christian. Don't get me wrong, he still gets the "look in his eyes" when I can tell he might go for the pull. So, I verbally give a warning, "Gentle, Elijah!" I think he gets it. Tonight, Christian was reading Elijah and I a book before bed and Elijah started getting "the look". I said, "You need to be gentle, Elijah." And he looked at me, reached up, took a little bit of his hair and did a little tug-tug. Ummm...yep. The boy gets it. I'm not holding my breath yet, but it would be AMAZING if I didn't have to worry that he'd be making all the girls cry at preschool.

Elijah is also starting to show me that there is a LOT he understands. While Christian was reading tonight, he would describe certain pictures from the pages to Elijah. Christian would say, Look, Elijah! See how the cat spilled the milk? It went Smack! Splat! Elijah looked Christian right in the face, intently and nodded his head and said slowly, "Yeah. Yeah." They did this together a few times- Christian pointing out certain pictures and Elijah agreeing with a "Yeah. Yeah." It seemed so clear and smart- as if he totally gets us and everything we say and do, but he's stuck with just a few almost-words and some signing to communicate his understanding.

I taught Elijah the sign (language) for "Apple" a few weeks ago and it was one he picked up and began using regularly, as if Oh Thank you! I've been DYING to ask for an apple and just didn't know how to tell you! He uses it- a LOT. He uses it so much that I began to get suspicious if he actually knew what it meant. Yes, he would sign for apple while eating meals and when I would bring him an apple or applesauce, he would smile and get excited. But, he said it so often that I was suspicious- I just didn't know if he really liked apples THAT much. Tonight, in the middle of cooking dinner, I realized I was missing a main ingredient and had to walk with the boys down to the corner market to grab what we needed. While there, Christian asked if I could buy some apples too (and Cheetos and popsicles and one of those airplane spinner candy holders.) I granted his apple request and when we got to the register, I put the apples on the belt. I leaned down to get the next item out of the cart and Elijah signed "Apple".

Yeah.

Yeah.

Maybe I shouldn't sound amazed. I know my kid and I know he's brighter than most people will likely give him credit for, but sometimes he's even brighter than I give him credit for. Elijah has a handful of word approximations now (words that start with the sound or are close to sounding like the actual word), but only one real, clear word: "Yeah". He's been saying it for over a year now. He's never used it when he clearly means no. He answers appropriately every time. And yet, he answers Yeah to so many things that I couldn't imagine that he understands them all. But...maybe he does. He amazes me. He really does. He's just plugging along in this life, doing his thing. It's at a slower rate than most everyone else, but he really seems to be doing it all anyway: Answering questions (as long as it's Yeah or No), following directions, trying to dress himself, feed himself, take out and put away his own toys. He sees cool things his brother or other kids do and he wants to try them. He's just my teeny, tiny little trooper, under dog and I couldn't be more impressed with him if I tried.

This picture is one I stare at over and over. We were having a moment together and he got up from sitting next to me, grabbed his shoes, pulled himself up onto a chair and attempted to put his shoes on. (He doesn't have the fine motor skills to get the shoes on yet, but he wants to be able to do it!) I grabbed my phone and snapped. I'll admit that I sometimes look at this picture when he's sleeping and make little pinchy fingers at the picture like I'm smooshing his cute, little face.

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My boys are in a phase where they are astounding me at every turn- from my firstborn using big, actual vocabulary-worthy words in a sentence to my little one nodding his head in agreement. Yeah. Yeah. I want to freeze time for just a moment and breathe this in. (Deep breath.)

Yeah.

Monday, August 5, 2013

Vacation Therapy

We took an actual vacation.We traveled across the country with 2 sleepy boys at 4:00 in the morning and landed in Philadelphia around 2:30pm EST. We hopped into our rented Prius and took off for the shore, where Charles' family had rented a beach house in the quaint shore town of Sea Isle City. And this was the view from our backyard:

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Collective sigh of contentment.

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The boys easily adapted to their new surroundings and even the time change. We sat out on the back porch drinking in the amazing view, took neighborhood walks in the wagon, Christian tried his hand at fishing with his cousin Kyle, we kayaked amongst the mud flats and tall grasses, bird watched as giant herons landed 50 feet from where we were sitting, but mostly we just enjoyed each other. It was a much, much needed break from our everyday life!

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Elijah has had zero therapy in over 3 months. Nothing. No physical, occupational or speech therapy. The school district SUCKS, and it is because of them that he hasn't been getting the services he really needs. And yet...therapy input does not always equal output. It's not solely because he has therapy that he performs a new task. Some of it is sheerly developmental, and some of it is opportunity. Elijah has made huge strides in the last 3 months. Even without the therapy. I've become his PT, OT, ST and all other forms of therapist. But, it's not because I've done such a great job. I just think he was ready. So, on our trip he started mastering a few new things.

Talk about opportunity. We didn't have a sippy cup that had a straw with it, which is really the only kind of drinking he has mastered. He doesn't seem to quite get that you have to tip a typical sippy cup up to get the water out. Maybe it's too tiring for him? I don't know. However, without our go-to drinking cup, we had to improvise. The beach house happened to have a small child's cup. So, I filled it with water and thought, Why not? Let's give it a try again. He did it! It wasn't perfect and it was a little messy, but he actually managed it. All by himself. I don't think I'd leave him unattended with milk in an open cup, but it's a step in the right direction. Did I mention how proud of himself he was?

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The boys loved their time with Grandma. Christian was open and affectionate with her and was a fan of everything "Grandma's". Elijah quickly warmed to her too, and was happy to curl up on her lap at the beach with a few snacks taking a break from his long walks on the beach (!!)

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We arrived at the beach not long after high tide, so the sand was nicely packed and not difficult to walk on. Elijah took it upon himself to walk along the beach, greeting sunbathers with enthusiastic waves of his arm and blowing kisses like he was some sort of celebrity. He quickly amassed the "Elijah Fan Club" with that action. I tried to get video, but was too busy chasing him myself to get anything quality.

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Charles built a sandcastle on the beach with Christian and his cousin Kyle. And for anyone who has been at the beach with Charles, they know he doesn't mess around. He comes with a full size shovel and seeks to create model-scale worthy sand castle construction. I took these photos prematurely, as ultimately the castle ended up with a 2 foot long underground tunnel, a master wing with porch, the obligatory moat, and tiny trees coating the landscape...

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We said goodbye to our lovely Sea Isle home after a few days and headed back to the small town in New Jersey where Charles grew up. We arrived late that night and trying to put Elijah down in an unknown crib in an unfamiliar house did not go well. I have seldom seen him so upset. He calmed immediately when I laid down next to him on the outside of the crib. His sweet face relaxed and smiled around the pacifier still clutched in his mouth. But, the second I got up to go, crying resumed. I said goodnight anyway and walked out to see if he could calm himself. Christian was sharing the room with him, and I could hear him saying, "Elijah it's okay. It's okay, Elijah!!" He said it a couple of times and then miraculously, the crying stopped. Elijah is not the only one making huge developmental strides lately. Christian is too. I found myself welling with tears of pride for the compassionate and helpful kid he's becoming. He's beginning to take care of and play with his brother, not because I ask him to, but because he wants to.

The following day we met up with our friends Ken and Susan for a little playtime in Franklin Square Park in Philly. Christian played miniature golf with Charles and Ken, while Susan and I watched Elijah navigate the playground. Elijah has one major behavioral issue: He's a hair puller. He's fast and he pulls hard, so I have to stay within arms reach at all times when he's around other kids. (He used to pull adults' hair too, but we finally broke him of that.)

I've got a new "Stop the Hair-Pulling Technique" going that seems to be working, but it wasn't without a cringe-worthy moment: I had been quickly stopping him and saying (and signing) "NO, Elijah! That HURTS her!" I am careful to make my facial expression very serious. He understands, makes a sad face and wants to hug me, but then the hair pulling will happen again within seconds. I decided I might have to try something new. So, one day not long before we left on this vacation, I was at a play area with a friend and her kids. Elijah reached out to grab my friend's daughter's hair and I grabbed Elijah's hand to pull it away. At the same time, I grabbed a little bit of his hair and pulled while I said NO! Elijah immediately let go and looked at me, shocked. I didn't know how I felt about this, but it was the biggest reaction I have ever gotten out of Elijah and the only thing that has made him willingly let go of the hair. (I've always had to pry his iron grip off the kids hair, apologizing profusely to the innocent child.) So, I thought I might be onto something. Maybe sometimes a simplistic approach is necessary. So, I continue watching him play. Sure enough, I see a little girl get right up into Elijah's space (which might be the trigger for him?), he reaches out, begins to grab and I swoop in and grab his hair. He immediately lets go, before he even got a good pull in and begins crying like a banshee. I look down and in my hand is a CLUMP of his hair. Like a lock of hair. Except more than that. My heart drops to my toes. My brain clicks through all of the reasons a clump would be in my hand...I didn't pull that hard, did I??? Maybe he has some sort of unknown hair disease, where it comes out too easily?? I look around to see if this moment has been fully documented by the other parents who are probably currently writing a blog post about the mean Mom of a child with Special Needs who pulled her kid's hair out at a play area. Great.

After Elijah calmed down (but I didn't), he went back to playing. We didn't have another hair pulling incident again that day.  I told my Mom the story, who assured me that young children's hair comes out very easily and it probably wasn't that I pulled too hard. I decided I needed to try the approach again, but just be very, very, very, very careful. Since then, I have used a very light little tug as a reminder, while I say, Don't pull Elijah. Be gentle! It actually seems to be working. I don't think this is a recommended technique by many, or probably ANY child professionals. But, I'm also feeling the pressure as the school year is approaching. At some point (after we finish battling the school district so that my child can be safe), he is going to be in a preschool classroom, sitting next to other kids. It will not be good or appropriate for him to pull their hair. So, I'm trying this "technique" out. It's risky because there will be people who take serious issue with it, I'm sure. Perhaps they would feel differently if it was their sweet, innocent child who was at the mercy of my child's iron grip of their hair? If this doesn't work, my Mom has had a ton of success using a water bottle to squirt her dogs' unwanted behavior. Perhaps that is next? Ha ha...just kidding...maybe.

Cut back to Franklin Square Park. We got through an entire park play without a single hair grabbing incident. This is HUGE. Do I dare see the light at the end of the tunnel with this unwanted behavior?? Instead, we watched Elijah walk and bounce and swing and enjoy.

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We finished the park trip up with a carousel ride and then headed to the loud and busy Redding Terminal for a bite to eat. We love that place and luckily so did my boys. Elijah was too hungry to be happy at first, but once we got him some lunch, he was in great spirits. Christian exclaimed (like he did every. single. day. of this trip) "This is the best day ever!"

Our trip concluded with what we affectionately call "the porch hang" at Charles' Mom's house. We sat out on the porch during a flash flood storm, with thunder and lightning, and even lightening bugs. To this California girl, it was heaven!!We had to pack up the following day and mentally prepare ourselves for the LONG trip home, but before we left, Elijah decided to show off the improvement he's made in his walking skill. He walked the entire block without help! He would sit for a second or two every 20 feet or so, but then he'd stand right back up and walk some more. Who needs therapy?!

We set off for our challenging trip home: rental car drop off, shuttle to terminal, THREE airplanes, 2 layovers, red-eye craziness, no dinner, baggage claim, shuttle to the airport parking lot, then the ride home. The boys were troopers, but it was a day I could have easily done without. 12 hours of travel for something that should have taken 6. It's just what we chose to endure to squeeze every last minute we could out of our trip with family. And while we waited on our layovers, Elijah walked among the travelers, waving, blowing kisses and winning hearts. At least there was that.

Not every minute of our trip was perfect, but it was a wonderful mix of relaxation, exciting milestones, laughs with family,  and new opportunities for all of us. Maybe Vacation Therapy is all anyone needs every once in awhile...


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