Beth Craver

@findingthejoy | contributor
Beth Craver is the mommy of three boys and the lucky wife of one. She and her husband, Bobby, have been married for 7 years and started their family late. They had their son, Calvin, at the age of 38 and then two and a half years later, Judah came into their world on November 30, 2014. Unbeknownst to them, Judah had Down syndrome, and Beth often shares the shift in perspective his diagnosis brings her. Augie surprised her two years later adding even more magic into the mix
Community Voices

Write a one-sentence letter to your younger self. 💌

<p>Write a one-sentence letter to your younger self. 💌</p>
395 people are talking about this
Community Voices

The Stroller

The stroller. Judah no longer fits in a typical stroller. We rode out that double stroller deal for as long as we could… but being that the little brothers hold a “healthy amount of competition” it was time to let it go before someone got hurt. So, I looked into getting Judah his own sparkly new stroller. Judah can walk. He started walking at 18 months and his physicality is a beautiful strength of his….too good perhaps. I’ve mentioned before that Judah has elopement. Just as when a couple “elopes” they run away to get married, Judah runs. He doesn’t look back (unless it’s to laugh at you chasing him) and he gives absolutely zero about danger. Therefore, my little eloper must remain strapped, buckled, harnessed, and whatever else they got, into a stroller situation. Because I only know what I’ve been through and I have no shame in my game, I questioned my most favorite community. I asked others via social media what stroller they used for their child. A friend reached out. She’s a few years ahead of me in this game we call “extra chromosome livin” and she sent me a link about the stroller. The cost? $545.00 and an extra $70 for the foot rest AND an extra $70 for the canopy top. My friend let us use hers when we went to Disney to see if we liked it. It was ah.maz.ing.

Look. I don’t want pity or a go fund me or even anger towards the price. I am writing this to bring awareness, because if I didn’t have to learn this stuff firsthand I would never know these secret scenarios that special need families live with. There is a possibility that Judah’s services will reimburse us if we buy the stroller but I only knew THAT from poking around. And don’t get me started on services and the hoop jumping I’m still doing to get all that in place. It’s an insane amount of paperwork, trial and error, who you know, waiting, bitching, … you get my point. Here’s my main point though. Special needs are just that. We need extra, different, more expensive stuff. It’s the only way to do life, unless you never want to go anywhere or have any fun. If you know Bobby and I, you know that is not an option.

So all these extras have me thinking, what if you don’t have an incredible friend who shares her wisdom? Or a credit card to put a stroller on? Or extra cash? Or have a computer? What if you don’t know how to fill in the mounds of paper work or what’s out there for your child? . I am so vigilant about all things Judah needs because I don’t want to miss a step. I want him to have the best shot at this crazy life . But I have opportunities. I am lucky in that way. I feel for the people who unnecessarily struggle because they just don’t know.

One very expensive stroller makes quite the metaphor for our journey: we are just out here wandering around, trying to navigate needs of our special soldier and constantly being rescued by others taking a similar trip. It is a small price to pay for this decadent, fulfilling life and it is an honor to pay it forward to all those who come after us.

Beth Craver

My Son With Down Syndrome Embodies All Things Christmas

As a true nostalgic I have a strong pull to look at your baby pictures and birthday blogs as your born day draws near. Well, I’m sure it comes as no surprise to you that I am obsessed; the way you fixed me, alter perceptions and change perspectives. Not to be outdone by the joy of your milestones and the delight in the way you love life. In fact, I once called you “Christmas morning” and I still stand by it. You give me such beautiful butterflies that it is a must to spend some of each day soaking you in. But…there’s always a but, isn’t there? I do not want to disillusion you. Christmas morning is a labor of love, my darling. There is preparation after the planning. And honey, as the kids grow it all gets harder. Once, not so long ago, I could throw you some crisp-Christmas wrapping paper and you would toss it with glory and glee. Now, I’m metaphorically building you a bike; complete with tons of decals and a lost set of directions.   Art Williams once said, “I’m not telling you it’s going to be easy, I’m telling you it’s going to be worth it…” and I swear he was speaking directly into my soul. Because, you see, you are the thrill of opening up that gift that you spent your whole life wishing for, but never believing you’d get. And you are also the adversity of hunting for that gift in hundreds of stores and waiting hours in line just to get it. It’s not your fault baby, it’s the name of your game. When you were a wee one and I shouted your worth through a megaphone on top of a mountain, I was not yet chasing you down busy streets or peeling you off floors. You were easy breezy. Now I’ve seen behind the curtain of the great, powerful, Oz that you are. I have to put in the work. We all do. Making sure you remain great and powerful is: hours of paperwork, thousands of conversations, gallons of patience. I want you to know this as you turn five and you start to get it a bit more (you even have a loose tooth like a big kid). All the work is what Art said it is — it’s worth it. You are worth every single hard moment and difficult day. Your joy outshines it all. And everything has changed since I carefully cradled your squishiness, yet nothing has changed at all. Watching you dance, is seeing the Christmas tree lit first thing in the morning. Hearing you talk, is hot cocoa by the fireplace. Seeing you achieve, is singing Christmas carols all dressed up at church. Your smile is pretty, wrapped gifts with a bow. And the way you know how to love people so good, is the Messiah himself. You truly are the star on top of the tree. You are Christmas my love, bike building and all. I love you Judah Michael and everything you personify. Happy 5th birthday sweet boy. May this be your best trip around the sun yet.

Beth Craver

It's OK for Your Kids to Ask About My Child With Down Syndrome

Dear fellow moms and dads, I believe we all want the same thing when it comes to our precious children. Whether we breastfeed or bottle-feed, home school, put them on that scary yellow bus or wave goodbye from the carpool lane. Whether we work or we don’t, give time outs or not, buy from the organic section or keep them on a steady cycle of almost-real chicken nuggets. Whether we go gluten free and media free, or hand them a TV dinner in front of their coveted iPad. Whether we hover or let them maneuver down the tallest and twistiest of slides. Whether we’re fresh off of a Pinterest board, completely winging it, rich or poor, typical or not; we all want what’s best for our babies. This is the truest thing I’ve ever known. From my city school teaching experiences to my journey as a mom to a child with a disability, I’ve found the love a parent has for their child is palpable. It is unwavering and it is fierce, no matter what tools we have to work with. We all want our kids to be loved and have friends. We want them to remain the kind, confident, little magic makers that made them believe they would conquer the world as toddlers. And so we all are just doing the best we can out there, paving the road for the wee ones who own our heart. That’s why we try so hard to preserve them as  they are, without fear, hurt or sadness. But mamas and papas, occasionally we overcompensate in a desire to protect. I know I do. Without thinking, I sometimes gasp at a mini boo-boo, scaring my child into believing a red-stained, skinned knee is tragedy.I use this example because it reminds me of the times your child stares at mine. I am aware of it. Every. Single. Time. You see, like you, I am on high alert. I too worry my child will encounter sadness, hurt or fear. And knowing what I know about the sometimes unforgiving world out there, I am also on the defense. But my defense is not what you may think. I am armed with a kind smile, a wealth of information (if you want it) and a warm welcome into part of my world. So please don’t have your child turn away from mine in an effort to be polite. I get your goodwill, I so get it. I once did not have a child with a disability and I still remember averting my eyes. But sweet parents, your efforts are backfiring. They make your child fear mine the way a gasp makes my kid fear a scrape. There’s too much protecting and not enough inquiry. Don’t worry, most parents of kids with disabilities don’t mind the questions. There is nothing more innocent and pure than a question from a child. Most of us aren’t sad and we aren’t attempting to hide our beloved son or daughter. Actually, we are trying to show him or her to the world. Here’s where you can help. You can have your child say hello to mine, maybe even have them high-five each other. And you can always give us parents a knowing wink or smile — one that says, “We get it. We see you, fellow parent. We are out here loving our children just like you.” In Solidarity,Beth

Community Voices

LET’S TALK: What is one service that would make your life easier?

<p>LET’S TALK: What is one service that would make your life easier?</p>
60 people are talking about this
Community Voices

You Are So Damn Special

If you live in the world of disabilities you’ve probably uttered one of the following phrases:

God does not give people with special needs to special people. I am not special.

You just do what you have to do .

You would do the same thing.

We are just a typical family.

…or any variation of the sort. How do I know? Because in my moments of humility while navigating I have said the same words. I’ve always felt like I’m reading the cliff notes to keep up with the ever changing world of #DownSyndrome and therefore unable to deem myself “special.”

Well, I’m here to call us out on all of our mild mannered modesty because I’ve realized that we are special damn it and we deserve that title.

No, Not everyone can do it. Not everyone is able to raise a child with a #Disability. Not everyone will. Some torn souls will make the heart wrenching decision to put their child up for adoption. And some of you reading this may be one of the special souls who chose to adopt. These are the stories that warm us…..But, let’s be honest. There are entire countries attempting to prenatally diagnose disabilities and www.cbsnews.com/news/down-syndrome-iceland them. So, the fact that you show up everyday is not ordinary or what anyone would do. You are as unique as the lovely human you are raising.

My son has Down syndrome. I was once told that it was the “Cadillac of disabilities” and I was told when he was just a week old that out of all the heart breaking disabilities , his is also heart warming. My point is this. Down syndrome isn’t easy. In my life there is There’s elopement, language delay, communication barriers ,safety issues, #SocialAnxiety and many many respiratory infections. And while I believe I deserve a pat on the back for not losing my shit on the daily, I do realize that in the world of disabilities there are more difficult roads to travel in not so comfortable vehicles. Regardless, we deserve those prayers, worry free nights out, compensation and celebration of how damn special we are!

….Especially the incredible people who: clean and operate g -tubes, give shots, live in the hospital, fight for services, know their child is going to die, own a wheel chair accessible car, restrain their child when they are violent, never hear their child speak. The “parents” who are stared at, the ones who’s doctors begged them to abort and the ones who disobeyed doctors orders to not resuscitate.

When you are thrust into the world of disabilities you see the gamete. I’ve seen so much goodness from caregivers. Please do not fool yourself into believing your work is typical, ordinary or otherwise. It is heroic to sacrifice for others …even if you made them. It is Godlike. It is other worldly. It is special. You are different. You’re child is different. We are not the same. I am tired of wearing that mixed up martyr mask. We exaggerate the downplay with an “aw shucks” and a “not little ol me.”

Let me be your voice of empowerment parents. You are doing something big while you navigate how to care for your child with special needs. You are showing love and empathy and most certainly have become a kinder person in this world. You advocate and celebrate and educate. You are changing the very definition of special needs just by being you. You are changing peoples minds and hearts. You are doing so much more than just showing up. Do not shyly and humbly deny yourself the compliments you so grandly deserve.

Instead, do what you would tell your kid to do. “Hold your head high and be proud of your special difference!!!!”

Community Voices

I’m in Wonderland

And behind the beauty of his almond eyes,  delicious secrets are hidden….on how to love, and be loved. Secrets of perseverance and small celebrations. Secrets that burrow down deep to make your soul better and your circle richer. It is all a glorious slip down the rabbit hole into the most perfect wonderland. #lifewithdownsyndrome  #downsyndrome #joysofjudah #dontwakemeifimdreaming

Beth Craver

What I've Learned From the Parent Community of Kids With Disabilities

I have just finished riding a pretty tubular wave. A Medicaid approval, my very first individualized education program (IEP) experience, World Down Syndrome Day and a respite refuge application came crashing in and we rode it out without wobbling. We are four years in on this journey and surfboards do not capsize as easily. My husband and I handled it all like bosses and we even learned some things along the way. Here is what I know for sure: 1. Parents of kiddos with disabilities are fierce fighters and unabashedly so. Never have I ever worn a t-shirt to a concert I was attending, but you can bet your sweet self I wore my, “Advocate Like A Mother” shirt to my son’s IEP meeting. We are proud parents who aren’t trying to pick a fight. But we are passionate protectors of the ones we love and we know firsthand how hard they need our safeguarding. 2. Parents of kiddos with disabilities are some of the kindest people you will ever meet. Although the grizzly is within us, much like the good Dr. Bruce Banner, we wish to remain calm and unstirred. We need a lot of energy, we do not wish to waste a single whisper of it. And we empathize, my goodness how we empathize. We fill doctor offices with knowing smiles, we meet moms in grocery stores who have screaming children and we authentically console. We understand tired parents, piles of paperwork, bad days and friends who are unable to keep commitments. We only stare if we want to offer up a smile, only judge if we see cruelty, and even then we don’t hold grudges. 3. We know people stare at us. What seems like forever ago, we too did not know about disability. We curiously watched others trying to comprehend a world so foreign to us. We understand that’s what people are doing. We know there is rarely any malice and we get it. We also hear our child being loud in an otherwise quiet restaurant. We are quite aware that he or she is experiencing a meltdown. We know we look different. Do not be embarrassed for looking a bit too long as you try to get a peek into our reality. Also, I can’t speak for all parents, but I kind of like it. You know the popular Dr. Seuss phrase, “Why fit in when you were born to stand out?” This resonates. I never felt like conforming. In fact, I rejected it. But that rebellious childhood story is a different tale for another time. In any case, I enjoy changing perceptions just by being seen. And while I realize that sometimes when people see our family it may invoke pity or sadness, some others  may observe us cheers-ing our drinks or smiling wildly and think, “What do they know that we don’t know?” Maybe their peek inside our reality won’t seem foreign or scary or sad, but more like some beautiful, whimsical secret. 4. We are aware that people with disabilities are the greatest minority group, yet they are the least supported and most under utilized. According to the World Bank, 15 percent of the world’s population is living with a disability, and persons with disabilities are more likely to experience poverty. So when we see possible funding cuts to services, our parent community gets fired up. We feel slighted. We feel less than. And most importantly, we feel sad. Because it is everybody who loses here. The parent community creates a narrative of overcoming obstacles, of perseverance, of unconditional love and support. It inspires. It is in fact that whimsical secret. We shine a flashlight in the dark because in the dark, without a flashlight, well, that’s how fear happens. You will not see those of us who love the disability community rioting, or retaliating  or even fussing with a vengeance. We will kindly remind you of our loved one’s worth by holding hands and wearing t-shirts. We will talk to our congressmen and sign petitions. We will share stories and pick up the slack created by our politicians… and we will band together in hoping that nice guys do not finish last!

Beth Craver

Mother Who Once Hated 'Welcome to Holland’ Now Embraces It

So there’s a lovely little story called “Welcome to Holland” written by Emily Pearl Kingsley.  It’s an analogy of sorts. It compares welcoming a little one with a disability to a trip to Holland when you were trying to get to Italy. If you haven’t read it, you should. (You can find it here.) It’s pretty amazing stuff… unless you’re still grieving, you bleed Italian blood or someone tells you this tale and botches it completely. Imagine my disdain when all three happened concurrently. I was in the hospital after my son, Judah, was born, doing what I did at the time: crying huge, puddle-making tears. My face was crimson and splotchy, my breath was hard to catch, my brain was blurry and my eyes were puffy and tired. In this state, I would’ve preferred that no one see me. But when you are in the hospital, nurses must make frequent visits. Every time a nurse arrived, I felt the need to preface my crying, in case they didn’t know. Their facial expressions were all similar. They were nervous to be around me and annoyingly much less afflicted than I was. They held sympathetic eyes but didn’t quite get my condition. I shared, sobbed and longed for them to say something along the lines of “Oh, this situation is clearly upsetting you. Let’s put that baby right back, do it again and everything will be perfectly OK.” Anything less than that statement invoked more tears and inner anger. There was one lovely nurse we already knew. She was a great teacher, but not a successful storyteller. When she arrived in my room, she carefully reviewed my fragile state. Satisfied that she could solve my suffering, she cleared a comfy space for herself at the foot of my bed. She then attempted to launch into the story of “Holland,” except she couldn’t remember the name of the place. “What’s that place with the tulips?’” she asked my husband, Bobby, and me. “The one with the windmills? Not Switzerland, what is it?” This was our introduction to the story. I’m now convinced I had her flustered. When I say I was in a state, words do not do it justice. This kind, blessed, sweetheart of a woman was grasping for words that my state made her forget. The pressure radiating from my sad, swollen eyes told her, “Please! Make this all OK.” Now I know I was a lot to take… so much, in fact, that I made her forget the name of the place the story’s named after. The nurse continued the story with the same amount of stammering. She knew some parts. She remembered we were supposed to head to Italy and that the place we were headed to wasn’t “disgusting or famine-filled.”  When even more details escaped her, she ended with, “Well, anyway, basically, the story is supposed to show you that you’re just somewhere different — not Italy, but not bad… and if you keep thinking of Italy, you’ll miss out on the tulips and windmills in this other place.” I hugged her as Bobby and I doled out thank-yous. Then, when she turned to leave, she put a finger to her lip and calmly rejoiced, “I remember now, it was Holland.” Not a minute later, when she finally retreated, my first words were: “Bobby, F#*& Holland!”… And that’s how I came to hate the story “Welcome to Holland.” It was that place with a forgotten name, told with careless disregard by a Holland-loving nurse. It was compared to the native land of my ancestors and told when my body was an anvil of grief. Others (and really, thank you all, it was not you; it was timing and it was me) sent me this story via Facebook in private messages. I kindly thanked them all and never once re-read it. In fact, here’s a quote from my first blog entry when I renamed it “Finding The Joy”: “I have chosen to rename and remake my life. I choose to not rename my life with a trip to Holland, but rather to include the ‘Italy’ in all my obstacles.” Whoa! That’s the stuff denial quilts are sewn from. But I wasn’t ready, and you can’t punch your airline ticket to Holland until you’ve felt what you needed to feel. Oddly, close to Mother’s Day, with no real acknowledgement, I was finally ready. Now, an attendant didn’t announce, “Beth, you may board your flight to Holland now” and no one pulled my arm toward the gate. It was subtle, eerie, fated. I just happened to be scrolling through my Insta-friends, many of whom hold a passport to this different destination. Littlest Warrior was explaining another top-selling, toddler t-shirt that boasted “Holland Tour Guide.” She shared the story for her followers. For some reason, I decided to finally give the story another try. It’s like I read it with a new set of eyes. I bursted with pride at every line, screaming “Yes, yes, yes… that’s us!” I did imaginary victory leaps with jazz hands singing in the air.  I cried tears for being understood and how the analogy nailed it just perfectly. I was so excited, I had to shout it to someone and so I shared the story, via Instagram, with my sister-in-law/dearest friend. Being the busy women we are, we never actually discussed what transpired. Then, the very next day, a Mother’s Day card arrived addressed to me from her mother. Inside, folded in fate, in my hot little hands, landed the story “Welcome to Holland.” I couldn’t call my sister-in-bestie fast enough. When we spoke, we couldn’t believe the timing. It was too wild that I shared the story with her, just hours before the mailman delivered her mom’s card. She revealed to me, “My mom has been wanting to give that to you, and she knew she had to wait.” The perfect amount of time had passed. The story was plastered firmly in son, Judah’s, book. My layover had expired, my journey was embarking, and I couldn’t wait to tip-toe through the tulips. I’m proud to announce that I am elated to be in Holland. There’s no sadness, regrets, jealousy or projection here. It’s a glorious revelation. I’m Dorothy in Oz but with everyone I love. I know, I know… those of you with the “fresh diagnosis” hate my positivity right now, my magical mentality. You can. You can want to stomp on tulips and detest windmills. That might be what you need. For when it’s all over, and the grief is gone, you’ll think, Geez why did I ever hate Holland so much? Holland never came to kidnap me. It never took me captive there. It never made me love it. It just was… with its beauty and differences.  All along it had sublime souvenirs, tour guides to teach me and brilliant brochures. Most importantly, it had glorious natives like my very own Ju-Ju. They were right there, all along, to change my perspective. Tales of tenacity, compassion, inclusion and prosperity run rampant in Holland. They easily sway me from rich red wines and crusty bread in Italy. I love you, Holland. I’ve arrived. I’m putting down roots here. And I may still take that trip to Italy one day.  But it will be to share all the fascinating artistry that Holland proudly holds. A version of this post originally appeared on Finding the Joy. The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.