Doing things differently

  • The gift of ‘I get it’

    four women are holding mugs (some teal mugs, some orange) and making a toast

    This is the first post I’ll be sharing as part of my #gratefulbraveawesome series, looking back at what I’m most thankful for in 2022 and some of the people who’ve inspired me the most.

    Earlier this year, I spent three whole days away from coordinating therapy appointments, monitoring tube feeds, and arguing with insurance companies.

    Even better? Those three days were spent in the Berkshires with other moms of disabled, medically complex, and/or neurodivergent children.

    I had the opportunity to enjoy this respite thanks to a nonprofit organization called A Mother’s Rest. (Note: While the organization is called A Mother’s Rest, they do offer trips for couples, fathers, spouses, and other caregivers or guardians throughout the year as well.)

    The program’s premise is simple: Bed-and-breakfasts around the U.S. partner with A Mother’s Rest to offer rooms at greatly reduced rates for weekends in the off-seasons. It’s a win-win situation: The innkeepers are able to fill rooms that may otherwise remain vacant during slow periods, all while attracting potential repeat guests. The parents are able to take a trip they may otherwise not be able to afford, while meeting others in similar caregiving situations.

    All weekend, we were able to use acronyms without necessarily needing to stop and explain each one: IEP, SLP, OT, ABA, etc. We discussed medications, hypotonia, stimming and sleep issues. We shared tips on financial assistance, therapy programs, and online resources.

    There are some things only another parent in this situation can fully understand. We’ve all been there: “There” being the realization that something is significantly different about your child, and that any prior expectations of parenting are now out the window.

    There was no bragging over college acceptances, varsity teams, GPAs or internships. Rather, mealtime discussions celebrated each of our children’s interests and milestones, whatever they may be.

    In the months since that weekend, I’ve kept in touch with several of the other mothers, including Jennifer Hendricks-Fogg.

    From the moment I met Jennifer, I knew we would be friends. We were at a welcome dinner kicking off the weekend, and I heard her discussing problems with her son’s G-tube feeding schedule. It turns out that not only are both our boys tube-fed, but they are only a few weeks apart in age!

    At just 3 months old, Jennifer’s son, Logan, was diagnosed with a rare form of brain cancer. Logan survived numerous surgeries and rounds of chemotherapy, and today is a cancer-free, sweet and spunky first grader!

    Jennifer started the Logan Strong Foundation to help others affected by childhood cancer. The foundation provides families with small comforts that make a big difference during hospital stays – phone charging stations, restaurant gift cards, etc. She also wrote a book entitled Tiny Miracles about her experience.

    I am so grateful for Jennifer and all the other moms I met during my weekend away with A Mother’s Rest. There is such a sense of relief that comes from meeting other parents dealing with similar challenges, emotions and experiences. Several of the moms and I have already booked a reunion weekend in 2023, and I am counting down!

  • A tea party of emotions

    A table is set for a fancy tea party, complete with snacks, tea, fine china and silverware, and flowers. The table is located next to a window looking out over the neighborhood.

    “Mommy!!!” the little boy shouted as he ran out of the school into the parent pickup area a few weeks ago. He had a big smile on his face as he hurried up to my side. Only one problem: This wasn’t my kid.

    “Right here, honey!” the woman behind me said to him, waving him over to her. In all fairness, both of us moms had the same brunette messy buns and big dark-framed eyeglasses. I chuckled, and smiled at the boy and mom. It was an easy mistake to make. So why did I feel like I was punched in the gut? And why were my eyes filling with tears?

    Then it hit me. I’ve never heard a child call me mommy.

    Okay, now I’m going to make a sharp turn now and change topics, but trust me, this segue will make sense in a bit.

    One of my favorite scenes in all of the Harry Potter series takes place in the fifth book, Harry Potter and the Order of the Phoenix, when Hermione tries to explain to Ron and Harry that their classmate must be feeling a variety of emotions – sad, confused, guilty, worried, pained, and afraid. Ron says “One person can’t feel all that at once.”

    Hermione, proving once again that she deserves someone much better than Ron (you know I’m right), snaps back, “Just because you’ve got the emotional range of a teaspoon doesn’t mean we all have.”

    In this scene, Hermione illustrates how one seemingly big feeling – grief – can really be dozens of conflicting feelings bouncing around inside us at once.

    That’s the best way I can explain moments like the aforementioned school pickup. (See, I told you I’d come back to the original topic.) I was filled with anger, sadness, grief, resentment, frustration, and a million other things. I was experiencing a whole tea party of emotions, simply because a child mistook me for his mother!

    I’ve experienced countless “tea party of emotions” moments like this over the past few years. I don’t know if it’s because I’m the parent of a disabled child, or because I’m a parent, or because that’s just life. (I suspect it’s the last one, though.)

    I’ve just started reading Good Enough: 40ish Devotionals for a Life of Imperfection by Kate Bowler and Jessica Richie. I am loving it so far, and highly recommend it. In Entry #2, the authors write, “You are capable of a whole range of emotions that can coexist. Joy and sorrow. Grief and delight. Laughter and despair. Sometimes, the absurdity even keeps us afloat.”

    Hermione couldn’t say it any better herself.

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  • Sitting is still something

    woman sitting on a sofa and looking into the distance

    During a telehealth appointment last month, my doctor mentioned she was glad to see me up and around. (We had been discussing the latest wave of the pandemic, and my ankle injury last fall).

    “Well, I wouldn’t say I’m ‘up and around’ at the moment,” I joked. “I’m just sitting on my bed.”

    “But you’re sitting upright. And that’s something,” she replied.

    JB has started sitting independently, pulling himself up from a lying down position and just sitting up, whether in bed or on the sofa or the floor. This is a HUGE milestone, and we are so proud of him for his determination and perseverance in getting to this point. The funny part, though, is that he’s remained pretty unfazed by the whole thing, giving us such nonchalant looks when we praise him for his hard work and how well he’s sitting up. To him, he’s just trying a new way of balancing himself and seeing things from a new perspective. It’s nothing to celebrate or think too hard about. In fact, the bigger deal we make out of him sitting, the more likely he is to start wobbling and possibly fall.

    I feel like that’s what many of us have been doing these past few months – just trying to sit up. Because some days, amid the omicron outbreaks and the cancelled plans and the childcare dilemmas, that is all we can do. It doesn’t feel like we’ve accomplished some major feat – we are “only” getting through this pandemic the best way we can. Like JB, we are balancing and looking at things a new way, and if we think too hard about it, we are likely to second-guess our selves and our efforts.

    So today, even if all you’ve done is sit upright, know that it’s still something. And it is enough.

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  • Back to school . . . in March?

     

    Okay, have we got JB’s backpack? Check.
    AAC device? Check.
    Glasses? Check.
    Leg braces? Check.
    Feeding tube emergency kit? Check.
    Jacket? Check
    Face mask? Check.
    Additional face mask? Check.

    I am reviewing everything one last time in preparation for tomorrow. It’s JB’s first day of school: Well, his first day attending school in person in 2021. This week, he will begin attending some of his therapy sessions in person, along with outdoor recess with his classmates. We are finally allowing him out of his pandemic bubble, and I’m not sure if I’m excited or if I want to keep him in this protected cocoon a little while longer.

    Almost all parents have had to grapple with decisions like this over the past year. Is it safe for my child to return to school or daycare? Do the benefits outweigh the drawbacks? Should we wait until there’s a vaccine approved for kids? Can we buy enough sanitizing spray for me to sleep at night? Will the other kids be good about handwashing? Should I maybe go to class with him to make sure he doesn’t lick anything? (Pretty sure this last one is specific to me, but figured I’d keep it in here just in case anyone else relates!)

    I don’t know if this hesitation is because I’m a parent of a child with complex medical needs, because I’m a parent in the midst of a pandemic, or because I’m a parent. What I do know is JB needs to be in school again, even if it is only for a few hours a week at first. He needs to have therapists and teachers who are not his parents. He needs a classroom outside of our house. He needs to grow, and explore, and cause (good-natured) mischief, and see friends in person and not only on a screen. He needs to listen to music other than the “Agatha All Along” theme song I seem to be humming ALL THE TIME.
    And yet, right now I am literally drumming my fingernails on my keyboard – sitcom secretary style – because of all my anxiety. What if it is too soon? What if JB gets sick, whether it’s from COVID-19 or a cold or some other type of bug? I’m trying not to let my thoughts spiral out of control, but that’s easier said than done.

    Deep breath. 

    I’ve double-checked the backpack, and I think we are as ready as we’ll ever be for school tomorrow.

    Oh, and I asked my science-teacher husband; He can’t invent a Wandavision-like force field to protect JB from coronavirus because apparently “that’s not how science (or the Marvel universe) works.” Whatever.

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  • Dear JB, it’s been quite a year!

    Dear JB,

    Do you remember where we were a year ago this week? I do.

    This was the week everyone realized it wouldn’t be a matter of if, but when a pandemic would be declared.

    We were hearing more and more about COVID-19, and everyone was worried about what this meant. We were debating whether or not to send you to school. It didn’t matter, though, because by Thursday afternoon, all schools had closed indefinitely.

    Your birthday party was supposed to be that Saturday, as we had decided March would be far less hectic than the week between Christmas and New Year’s Day. (We thought we were sooooo clever!) So, as everything shut down, we spread the word that the party would be held once this whole thing was over. (I wanted to keep our order for two-dozen cupcakes, but realized it may not be the best decision health-wise.) We figured it would be a few months, at most.

    We had no idea what to expect when this started. As I wrote in a blog post during that time, “It feels like we are all preparing for some big storm, but without a definite ‘start’ and ‘stop’ time. We all bought the bread and milk. Schools are closed. So when is the snow day getting here? Is it coming in a day, week, month, year?”

    We tried to keep our family as busy as possible during those first few weeks. We watched a LOT of animal-related educational videos on YouTube, taking advantage of the fact that your dad is a science teacher! You and I made loads of art projects, like the hands pictured above. I took on additional freelance writing assignments, as I found writing about “the helpers” was the best way to ease my anxiety during this uncertain time. And we spent as much time as we possibly could in our backyard, hoping the fresh air would boost our spirits.

    I don’t know what you will remember about these strange past 12 months. Will you recall all of the Zoom classes and family get-togethers? Will you tell people how unbelievably cluttered our house was once it also became a 24/7 preschool/therapy room/high school science classroom/office/restaurant/movie theater/concert venue/doctor’s office/summer camp? Will you look back longingly on the small, quiet at-home celebrations we had for Easter, Thanksgiving and Christmas? Will you one day tell people about how your crazy parents went through all sorts of “phases” during this time at home, including (but not limited to) sourdough, model building, succulents, painting, and Tiger King phases?

    Friday, one of your school therapists said to me excitedly, “Megan, I hope you see that there is a light at the end of this tunnel,” as she and I discussed plans for you to return to some in-person classes. I am still afraid to “jinx” anything, but I am once again starting to have hope.

    One of my favorite writers, Emily P. Freeman, said the following in a recent episode of her podcast The Next Right Thing:

    When I look back to this time one year ago, one thing that stands out was how impossible it became to make any plans at all. We were at the beginning of the great pause, but we didn’t fully know it yet . . . . So much felt impossible for so long, and some things still do, if I’m honest, but one question is rising up in me . . . . Is it time to dream again?

    JB, I have no idea what this next year will bring. I know there are positive signs, such as the vaccines, new national leadership, and the reopening of schools. Is it time to dream again, though? You bet it is! We may have to wait another year before we take that trip to Sesame Place, but nothing could postpone your strength, resolve and sense of humor. Kid, you’ll move mountains!

    Love,
    Mom

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  • Using milestones to measure our children and ourselves

    Affiliate links are used in this post. As an Amazon affiliate I may earn from qualifying purchases at no cost to you.

    When I was little, I loved looking through my baby book. As the firstborn child, my book was obviously meticulously filled out with each and every detail about my first year or so. (#SorryNotSorry, dearest younger siblings!) I couldn’t believe I was ever that tiny, or my parents were so young, or hairstyles and eyeglasses were so big – long live the 1980s!

    When I was pregnant with JB, my husband and I purchased a baby book called When We Became Three. It had all sorts of cute prompts about how we met, what our first date was like, who attended our wedding, what my pregnancy cravings were, etc., all the way up to the baby’s second or third year.

    I stopped filling the book out when JB was about four months old. It was clear that the categories and questions no longer applied to the “Three” that “We” had become.

    From the moment they are born, our kids are literally measured against other children, as we are given not just their height and weight in inches and pounds, respectfully, but also as percentages compared to other children their age.

    Then the developmental milestone questions start. Each pediatrician appointment those first few months (and years) is filled with questions like “Is s/he grasping toys?” or “Is s/he making consonant and vowel sounds?”.

    If a child doesn’t meet certain milestones, additional assessments may be made, including a variety of formal tests that literally break down the child’s emotional, intellectual, social, physical and developmental progress in terms of age. Imagine getting an official medical document saying your several-year-old child has the social skills of a several-month-old infant, for example. Guess what? It feels like a slap in the face, and a giant F written in red pen across your forehead. “YOU HAVE FAILED AS A PARENT,” that document screams, no matter how many times doctors, therapists, and loved ones tell you “it’s just how they have to write it” or “it needs to be an objective assessment”.

    Yes, I get that they need to use consistent measurements in these reports. That’s how science works; I am aware of this. It is not some big conspiracy to make us millennial parents feel triggered. But I also get that it’s pretty likely the medical professional who came up with these reports, just like the professional who coined the term “failure to thrive”, wasn’t an insecure new parent already trying to keep their head above water during this terrifying new chapter of their life.

    Every time I need to fill out new patient forms for JB, I’m faced with pages of these same milestone questions: “Can your child speak in complete sentences? When did your child first smile? At what age did your child begin eating solid foods? When did your child quote The Office for the first time?” (Okay, that last one was obviously made up, but I definitely WILL be returning to JB’s baby book to mark that momentous occasion when it happens!)

    Some parents of disabled kids like using the term “inchstones” – as opposed to “milestones” – to describe the small but significant steps of progress their children make. I don’t personally use this word, because I feel like it unintentionally does the opposite and minimizes disabled kids’ efforts under the guise of being “cutesy”.

    I do, however love the idea of celebrating a child’s individual achievements and timelines. For our family, that meant texting family, friends and former therapists when JB showed us he could identify animals and colors. It meant taking photos and cheering when he started bearing weight on his legs without trunk support. It means telling him every day how proud we are of his hard work and determination.

    We have made it a priority to fill JB’s bookcase with stories of characters accomplishing things at their own pace through perseverance. Here are a few of our family’s favorite picture books on this topic:


    Well, that’s my rant about milestones. I completely understand that none of the above scenarios are intended to shame parents. However, realizing something is not meant to be taken personally, and not actually taking it personally, are two very different things. So I guess one of my 2021 resolutions is going to be not seeing “FAILURE AS A PARENT” whenever I fill out forms or answer physicians’ questions. Because “learning to give myself some credit” is one milestone I’ve been meaning to check off in my own baby book for almost 35 years now!

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  • Feeding tube 101

    What do you think of when I say “feeding tube”?

    I can tell you what I thought when I first heard JB’s gastrointestinal (GI) doctor say he’d need a feeding tube:

    • I remembered one time when I was maybe 12 and I couldn’t eat because I was too anxious about something happening at school later that day. Someone told me, “You know what happens when people don’t eat? They get a tube up their nose and have to get their food that way. You don’t want that, do you?”
    • I pictured the images I had seen in the media of comatose people in hospitals, hooked up to tubes and beeping monitors. (The Terri Schiavo case was all over the headlines when I was in high school.)
    • I thought of the scene from Season 2 of Arrested Development when Buster Bluth says he’d be happy just being fed soup through a tube for the rest of his life. (My mind usually turns to at least one sitcom quote, even in crisis mode.)

    I believe this is what actually came out of my mouth when JB’s doctor mentioned feeding tubes: “He’s going to be hooked up to a machine forever?! He won’t be able to go to school or have friends or be a kid!”

    Thankfully, the GI doctor was a mother with young boys about JB’s age. She “got it” from a mom’s point of view, and for that I’ll be forever grateful. She had a nurse come in and together they explained how common feeding tubes actually are. “Tubies” – or people that use feeding tubes –  live fulfilling lives going to school, playing sports, making friends, having careers, and raising families. It is just a different way of eating, not a life sentence.

    The nurse and doctor then showed me a feeding tube button like the one JB would have. I’m going to attempt to explain it the best way I know how, but I urge you to learn more here to see for yourself. The G-tube button looks like a combination of a post earring and the air vent you use to blow up an inflatable beach ball. The button is surgically inserted into the stomach – basically like piercing an ear, but in his stomach, and a wider “post”. It stays in thanks to the “backing” – a plastic bubble you inflate with a few milliliters of water. If the button comes out, you simply reinsert it and reinflate the bubble. If the button comes out and isn’t reinserted within an hour or two, the “piercing” closes up.

    There are several kinds of feeding tubes, and each is named according to where it enters the body and/or delivers food. JB originally had a G-tube. (G is for Gastric, as it goes directly to the stomach.) He has had an NG tube (Nasal Gastric, as it enters the nose and goes down to the stomach) before during hospital stays, as those are usually temporary, and don’t require surgery to place them. He now has a GJ tube (Gastro Jejunal, as it has a port into the stomach and a port into the “jejunum” part of the small intestine.) Here is an excellent explanation where you can see examples of these feeding tubes and other kinds. No matter what the tube button, you use an extension tube to insert the food into the body, whether by syringe, gravity or pump. Here are some of the most common feeding methods through the extension.

    So what goes into these tubes? Well, it depends on each person’s nutritional needs and lifestyle. Breastmilk, traditional infant formula, specialized formula for all ages, or blended and pureed foods are all options for tube-fed diets. Often times medicine and water are also given through the feeding tube.

    I encourage everyone to take some time this week – Feeding Tube Awareness Week – to learn a bit more about feeding tubes. There are so many awesome resources out there to de-stigmatize them.

    Finally, if you learn nothing else from this article, please remember this: Never, ever base medical knowledge on Tony Hale characters. No offense, but Buster and Forky are not licensed medical professionals.

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  • Demystifying disabilities

    (Please note: This post was written before I knew about author/activist Emily Ladau’s incredible book Demystifying Disability. The similar post title is a complete coincidence. I highly recommend reading her book and following her on social media!)

    A few weeks ago, a college friend reached out to me on Facebook with the sweetest message. She wanted to know if I had any recommendations for how she and her young children should best engage with kids with disabilities in a way that is respectful and supportive.

    First of all, I’d just like to thank this friend, and others who have asked me similar questions. Seriously, though, the fact that parents want their children to know about and celebrate differences is absolutely reassuring to me, as I prepare to send JB off to preschool next month. It gives me hope that kids are becoming more accepting of and comfortable with people not exactly like them.

    As for what to say when meeting someone with a disability, (child or adult), I’m quickly learning everyone is different at what they appreciate or don’t appreciate. But so far, I’ve been amazed by how well my friends and their kids have come to accept and embrace JB!

    It’s funny, but there are two different – and totally appropriate – reactions kids typically have to learning about JB, whether it’s his wheelchair, his feeding tube, his hand and head movements, or his lack of talking:

    1. The kid shrugs and says “Oh,” and moves on to another topic or walks away.
    2. The kid says, “Oh,” and then asks an amazing follow-up question like “Does he drink Magic Formula like Boss Baby?” (In case you were wondering this same question: Yes, JB gets formula, and I guess it’s kind of magic in the fact that it gives him all of his nutrition. No, he doesn’t drink it. And no, fortunately JB – unlike Boss Baby – doesn’t sound like Alec Baldwin!)

    I find my friends and I have the best luck explaining it in the terms of showing what’s different between the children but what also is the same. So if the child asks why JB doesn’t walk, we answer, “His legs aren’t strong enough yet to walk like you do, but he has this cool chair that helps him get around. Isn’t it cool how many ways there are to move and explore?”

    Or if they point to JB’s feeding tube, we’ll say, “That’s how he gets his food in his belly. It’s like how you’re eating your sandwich by mouth and it goes into your stomach. Isn’t it amazing how many ways there are to eat?”

    This way they see what’s different but also what they have in common.

    The main thing is to explain there’s nothing to be afraid of – kids with disabilities are still just that – KIDS. They enjoy dinosaurs, Disney movies, hockey, stickers, iPads and other things just like other children.

    I promised my friend I’d compile a list of some of my favorite children’s picture books that explain disabilities in easy, approachable language. I also thought I’d share this list on the blog, as it is holiday shopping season and people are looking for great gift ideas. Enjoy!

    1. Daniel’s New Friend by Becky Friedman: This story recaps the Daniel Tiger’s Neighborhood episode of the same name. It introduces Chrissie, a new character who uses leg braces and crutches. I love this book and TV episode because they show Daniel and his friends showing curiosity in their friend’s equipment, then moving on to get back to playing. They don’t completely ignore the difference, but rather it’s acknowledged, and then accepted. (Side note: This story is also included in the collection Daniel Tiger’s 5 Minute Stories.)
    2. Just Ask! by Sonia Sotomayor: “Why would a Supreme Court Justice write about kids with disabilities?” I know that was my first thought when I heard about this book. It turns out that Justice Sotomayor had diabetes starting at a young age, but her classmates never asked her questions about it. She wanted children to know that curiosity and questions are good, and that disabilities and chronic health issues can be respected and talked about. There are a variety of disabilities and differences mentioned in this book, such as asthma, blindness, deafness, autism, food allergies and dyslexia. Also, the illustrations are incredibly beautiful.
    3. We’re All Wonders by R.J. Palacio: This book is a spinoff of the New York Times Bestseller Wonder. It follows Auggie, a young boy with facial differences, and his dog, Daisy, as they go on adventures. The message of the entire Wonder collection is to “Choose Kind”, and frankly we could all use that reminder. If you want to hear a sample of We’re All Wonders, check out this video of Luis from Sesame Street reading it aloud.
    4. We’re Different, We’re the Same and We’re Wonderful by Bobbi Jane Kates: This Sesame Street book first published in 1992 discusses differences of all kinds, without ever using words like nationality, race, gender, religion or disability. Are the illustrations a little dated and cheesy? Yup, but that’s part of its charm!

    I’d love to hear your favorite books for helping explain differences – whether disabilities, gender, religion, race, etc. – to children. Feel free to share your recommendations!

    Please note: These opinions are all entirely my own, and I have not been compensated to review any of these books. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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  • Have JB, will travel: On the road this holiday weekend

    “Twenty bazillion travelers are expected to hit the roads this Thanksgiving weekend, according to the latest report from ZZZ…”

    Back in the day, (the “day” being my 20s), a big part of my job was writing/editing/distributing press releases that started just like this!

    While I no longer work for “ZZZ” (clever pseudonym, I know), I still feel a sense of nostalgia for pre-kid road trips. Back then, our biggest concern was giving the dog his anti-nausea meds before he got in the car.

    Today’s packing list looks a bit different:

    • IV pole for the feeding tube pump? Check.
    • Enough cans of formula for the entire length of the trip, plus extra? Check.
    • Medicines, syringes, bottled water and feeding bags? Check, check, check and check.
    • The actual kid? Check.

    I’m fortunate that most of our family live close by. When we do travel, though, there are several items that are CRUCIAL for making the trip with JB easier. Here are several indispensable products we swear by for traveling with our special needs toddler. Even if you don’t have a child with a feeding tube or wheelchair, I bet they’d be helpful for your little ones, too.

    • Skip Hop insulated bottle bags: I have an unspoken rule that if I see one of these bags on sale, I buy it. No matter what. I LOVE these mini coolers. While meant to keep bottles chilled (with the enclosed ice pack), we use them to store JB’s feeding pump and bag during the day. These bags have a great buckle handle, making it easy to attach to a stroller, car seat, high chair, etc.
    • Skip Hop stroller organizer (no longer available, but see similar model here) : Most strollers come with at least one cupholder for the grownups. Unfortunately, those cupholders are usually plastic and appropriately have giant “No hot beverages!” warnings. Enter this bag. It works with any stroller – including JB’s wheelchair stroller – and includes an insulated cupholder just screaming for me to finally put my latte safely down and free up my hand. Fact: I’m a much better mommy when I have my coffee with me.
    • Columbia diaper bag backpack: This backpack has been with us since we went to the hospital to have Baby JB. Since then, it’s withstood almost three years of JB, including daycare, playgroup, road trips, amusement parks, nature walks, playgrounds, the beach, and more. It’s fantastic: Super durable, tons of storage, and ultra comfortable. The only downside? Several of our friends have the same one because we all keep recommending it to one another!
    • Bright Starts Beaming Buggie: Behold, the little firefly that has made every overnight trip and hospital stay a whole light brighter. This toy seems simple: a cute little plastic bug that plays music and lights up. But it also has a waves/white noise option, which we use to help JB feel more at home wherever we are. It clips on to the pack-and-play or crib with ease, and is much easier to pack than a traditional white noise or music machine.
    • Wildkin nap mat: Consider this a “starter sleeping bag”. JB loves this all-in-one mat, blanket and pillow. It’s easy to roll up and bring when visiting family and friends, and it gives JB a familiar setting for his nap. Apparently it’s pretty comfy, too, considering we have photos of my dad napping next to it at a family function!
    • Blender Bottles: This one goes out to my fellow formula-feeding moms out there. These are the perfect way to mix a day’s worth of formula with minimal dishes to wash! Great for travel or everyday.
    • Car headrest hooks: Someone in a “tubie parent” Facebook group recommended these simple hooks. They are so simple, but so useful! We hang JB’s feeding tube pump bag (see: Skip Hop Bottle Bag above!) from these during car rides. You can also use them to hang car trash bags, headphones, purses, shopping bags, and probably 100 other things I can’t think of right now.

    So far, we’ve only traveled domestically by car on our trips with JB. Air travel and international travel are completely different ball games, from what I’ve read and seen. We’re not that brave yet, but I am hopeful that over the next few years travel will become more accessible to disabled travelers and their caregivers.

    What are your road trip must-haves? I’d love to hear!

    Note: This photo is of our dog, not JB. It obviously was taken while the car was safely parked. We would never allow our dog to stick his head out the window while the car was moving. We also would never leave our dog in a parked car unattended. 

    These opinions are all entirely my own, and I have not been compensated to review any of these products. That being said, there are Amazon affiliate links in the above post. As an Amazon Associate I earn from qualifying purchases.

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  • The seaweed is always greener

    We’ve been somewhat strategic about the children’s TV shows JB watches. Don’t get me wrong, I don’t have any problems with screen time; I just don’t want him knowing who Caillou or Peppa Pig is, out of fear that he’ll start wanting to watch them and I’ll have to listen to them. Better to stick with nostalgic favorites: Muppet Babies, Mister Rogers’s Neighborhood, and Sesame Street. (Some may call this selfish, but I call it self-preservation.) There’s one newer show, however, that JB can’t get enough of – Splash and Bubbles – and as a result, he’s completely, utterly fascinated with ocean life. Latching on to his love of all things underwater, our family recently took a day trip to Boston’s New England Aquarium.

    Before heading to the aquarium, we did a bit of research about what to expect. Is the aquarium handicapped accessible? Could we bring his stroller and feeding pump? Would there be quiet places to take a break if JB was getting overstimulated? The answer to all of these questions, luckily, was a resounding yes! I cannot emphasize enough how impressed I was by the New England Aquarium’s attention to detail regarding accessibility and inclusion.

    When we arrived, we were able to borrow a free sensory kit from KultureCity, filled with fidget toys, noise-cancelling headphones, some picture communication cards, and other helpful items. We didn’t end up using the kit, but knowing it was there if we needed it was a huge relief.

    Regarding wheelchair accessibility, I was pleasantly surprised by how much JB could see and experience from his seat. Many parks and museums have guardrails placed right at JB’s eye level, making it hard for him to see or interact with the attraction. The focal point of the New England aquarium, however, is a central tank extending four floors tall, with floor to ceiling viewing windows, and a ramp spiraling around it. As a result, you can see the animals (and occasional scuba divers) from almost any angle. Even better, JB was able to get very close to the glass, immersing him in the experience.

    In one of my favorite moments of the entire visit, a sea turtle swam right up to the glass, and JB started smiling and waving. JB then began making a “muh-muh-muh” sound and signing “more, more, more!” It was an interaction I’ll never forget.

    (I could make some type of joke about how this turtle helped JB come out of his shell, but I’m too mature for that kind of nonsense.)

    JB had another memorable animal encounter at the Edge of the Sea Touch Tank. An aquarium guide, seeing JB in his wheelchair unable to reach the tank, brought a hermit crab in a small container over to him, so JB would be able to see and touch the crab like the other visitors. It was probably just a small moment for the employee, but this inclusion meant the world to us, and to JB.

    Before we left the aquarium, we obviously had to visit the gift shop. (I’m a firm believer that it isn’t an actual museum/zoo/aquarium/theme park visit unless you visit the gift shop.)

    “We are not buying him another toy today, no matter what,” I vowed all morning, citing the mountains of toys already taking over our home.

    My husband and sister both smiled, knowing I would never actually uphold this promise. Sure enough, we ended our visit with a brand-new “wildlife rescue kit,” basically a doctor’s kit and a stuffed animal (JB chose a sea lion) inside a cute little pet carrier. I have to admit, though, it was a smart purchase – he plays with it almost every day. So look out, we may have a future veterinarian on our hands!

    Joyfully recommended…

    One way we’ve been encouraging JB’s “under the sea” interest is through picture books. Here are some of our family’s favorites:

    • An Anthology of Intriguing Animals: This book ticks off boxes for everyone in our home. Gorgeous book design inside and out (for me)? Check! Interesting animal facts (for my science teacher husband)? Check! Cool photos of animals both underwater and on land (for JB)? Check!
    • Manfish: If you had told me pre-parenthood that one day I’d list a biography of Jacques Cousteau as one of my favorite children’s books, I would have called you crazy. But this book is so breathtakingly beautiful, I would willingly hang up the pages as artwork around my home.
    • Three Little Words: Imagine the adorable, uplifting “just keep swimming” spirit of Finding Nemo and Finding Dory, combined with soothing watercolor illustrations of the beloved Pixar fish. Three Little Words will brighten your day no matter how bad the world may seem. 

    (There are Amazon affiliate links in the above post. As an Amazon Associate, I earn from qualifying purchases.)

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