Hi my name is Beth Craver my husband out there is Bobby Craver and we have a two year old named Judah with Down syndrome. You may have noticed him gracing the Gala invite this year. I also have a debilitating fear of public speaking. I cry, shake and turn multiple shades of red. So if you see any of that going on tonight that’s why. But somehow I’m up here. I still can’t believe it but I am. And that is a testament to exactly how much my little boy has changed me. After Heather called me to ask me to speak, it took me twenty minutes to say yes to something I’ve been avoiding for 20 years. Judah has transformed me and Gigi’s has transformed me And That’s what I’m here to talk about tonight…
For those of you don’t know me …we did not know Judah was going to have Down syndrome, that is I never had the test. I was very encouraged to get it because of my advanced maternal age and honestly, we really debated it… but in the end, because I had lost my teaching job and had no insurance at the time ,we decided to disobey the doctors wishes and forego it. Here’s the thing though…for nine straight months I worried about Down syndrome. I was consumed by it. I was absolutely convinced my son would have Down syndrome. I was in a perpetual state of googling and those closest to me knew it was my biggest fear. I have learned since then that this is a thing. Many moms who did not get the test just knew anyway that their child was going to be born with Down syndrome. In fact, looking back, I think that on some level maybe I never did that test because I didn’t want to have to make the difficult decision the doctors wanted me to make about my child’s value.
So when Judah was born I was lucky enough to have a very good friend who is a nurse in the delivery room with me. She later recounted I how had the most terrifying look on my face when I asked her “is he okay?” She answered with the warmest and truest “yes.” and she was right but when I looked at my son and my husband looked at him, we instantly knew. We actually had some trouble convincing the doctors of what we already knew. The pain I felt is inexplicable. I can’t even describe how deep the ache was. That feeling of being in crisis…. Those of you who have had a baby with Down syndrome may know what I mean and those of you who love someone who had a baby with Down syndrome may understand, but it is tough to describe. I will never ever forget it. Most people say that they feel this way because they are grieving the loss of the baby they thought they were going to have. For me, this wasn’t the case. I expected my baby to have Down syndrome. It is the only baby I ever imagined. First off,I couldn’t actually believe my biggest fear came true. And also, I’m pretty self conscious, and I have areal need to be well liked, so what I feared most is that we wouldn’t be loved. I thought my life as I knew it was over. …that friends would disappear and that we would be made fun of. I thought people would think my baby was ugly and that we would be some sort of pity or joke
Well, let me tell you, there was a revolving door of love at our house when we came home from the hospital. Friends and family brought meals, and gifts, and wine and tears and hugs and laughs.
We just had a little baby 5 months ago named Augie and when he was born I said to Bobby, I don’t know how we did it back then? How did we entertain all those people while caring for a newborn and absorbing a diagnosis? But back then we needed it. I needed to feel that love then I needed my people. They dismantled my fears. They saved me…And I started to wonder if Down syndrome was the monster I made it out to be in my mind.
When Judah was just 20 days old, he was rushed in ambulance to the hospital with RSV. There was this medic and wish I got her name. She was so special to me. I remember her straddling the ambulance gurney looking at Judah the whole way. She kept whispering endearments to him like “you got this buddy” and “hang in there cutie” I remember being so perplexed. In fact I even said to her “do you know that he has Down syndrome?” She said she did and her eyes never left his. We remained in that hospital for 13 days….through Judah’s 1 month birthday , through Christmas Eve and Christmas… and we finally went home New Years Eve. The whole time the doctors and nurses worked tirelessly to save my baby,…some missed their very own family Christmas celebrations to be with my son. Again I was just so confused. I couldn’t quite understand because everything these doctors and nurses were doing was so out of line with how doctors looked at my child’s worth just 9 months earlier. And Again, I started to second guess what I thought I knew about Down syndrome.
When we left that hospital we were pretty much quarantined to our house during the winter months. Our very first outing was to to The mall on March 21st 2015. World Down syndrome day. I had heard of Gigi’s through a mutual friend and knew I wanted to be a part of this day to truly heal. I was terrified. I didn’t know what to expect. I guess I envisioned a support group of sorts. I pictured a lot of people asking about my baby and me telling my story. I pictured crying and strangers telling me how sorry they were. And so,I brought back up. I rallied all of my friends and family to support me. As we walked to the event I was so completely scared but I didn’t need to be. There was no sadness there. Everyone was smiling and laughing and happy balloons bopped all over the place. There was music and dancing and a boy with Down syndrome was raffling off prizes. The only time people asked about my baby was if they could hold him and they did. It was inspiration at its finest and Gigi’s will always be that defining moment when I realized that I was misinformed and that I was a part of something very special.
Nobody told me about all of the love . Nobody mentioned the good parts about this other world…where people take care of each other and believe in acceptance and kindness…And don’t even get me started about the person that Judah is. He makes us laugh and brings us joy every day. He amazes us every day. That’s a whole other speech in itself. But No one tells you about all of these parts when you are a scared mom who decides not to do the test. I was so gravely wrong. I did not believe there were this many people in the world that cared about Down syndrome, let alone people in this room. There is so much good….but there are also so many people out there who think the way I thought. I want to fix all of the people who believe what I believed.
So, I will continue to stand with Gigi’s shaking and sweating and turning different shades of red until everyone in the world believes in people like Judah the way all of you do…thank you for that…. and thank you for having me tonight. Good night and God bless.
When I was a kid and Cabbage Patch kids were all the rage… I’m talking all the rage, like people beating each other up for them (that’s when you really know something is great) I, like every other kid in America, asked for one from Santa. Santa Claus did not deliver. I was devastated and heart broken. Instead, Santa did his very best and gave me a homemade, hand sewn, knock off , non-look alike, Cabbage Patch named Libby. I was mad at Libby for about ten whole seconds and then man, did I love on her hard. She went everywhere with me. Me and Lib were thick. Occasionally I would remember that she was not the real deal and be embarrassed by her falsities, however, love would always prevail and all of everything else would disappear.
I was pretty concerned about having a baby with Down syndrome. Even though now I know there are thousands of disabilities, Down syndrome seemed to be the one to torment me. People really spook you about that one. Never mind that I had a good friend who’s sister had Down syndrome or that an old boyfriend’s cousin had it too. Never mind that I wasn’t scared of either one of them and that I actually found them endearing. All of those goodie-goodie gum drops were tossed out in the trash when I thought that it could happen to me. The detriment of the possibility consumed me. And when it actually did happen,oh my how I fumbled. I spent quite a bit of time wondering how. I was devastated, embarrassed and hurt. Judah’s big brother came to visit with his sweet big brother shirt on and it nearly killed me. This was NOT the little brother I wanted for my first baby boy. I became literally sick over it. I spent a little bit of time feeling sorry for myself and healing was a process.
I’m two years into the journey now. I’ve since had another boy and so that makes 3 darling little monsters for this mommy. While I simply adore all three of my sons, there is a fierceness in the way I love Judah; a fierceness that says “don’t mess with us!” Judah is my Scooby-doo, my Gilligan, my Beavis,my Ernie, my Oats, my Sonny and my Biden. We have something. People see it and I feel it. I am so in love with this little human that I am actually secretly mad about his independence. He is absolutely bound to do great things and leave me one day.
All kidding aside, sometimes I can’t believe the way I have changed. I was moving bins of clothes around yesterday and I actually saw that old big brother shirt. I wept. I cried for how hopeless and hurt I was. I sobbed for what I didn’t know. That old pain is unforgotten. But now, I am not in the least bit scared anymore. In fact, I cannot wait to see this child every morning. He makes me laugh a thousand laughs a day and amazes me just as many times. I no longer wonder how this could have happened to me. Rather , I thank God everyday for giving me a gift of love that prevails and makes all of everything else disappear.
Do you ever just feel off? I’ve felt off for awhile now. I’ve chalked it up to winter blues. Seasonal effective disorder and all of that…..Or? or? Could it be that I had a child three months ago and am still trying on rockstar mom for size . I’m wearing my full-time work suit ,crafty mom shirt , PTA mom attire, adult-fun outfit and writer apparel. As I am sure you would imagine, I’m failing; miserably. This is not a pity post, please…but currently we have A strep throat, RSV, sibling jealousy, ear infection, growth spurt kind of thing going on here and I have been known to heave hidden sobs for a hot, hot minute.
In any case, I haven’t been feeling it. In fact, I’ve been downright paranoid….wondering if I lost my little gratitude sparky spark for good.
This weekend while Bobby was down and out with strep and Judah had God knows what and Augie kept crying , I went to get coping wine that went BAD (are you kidding?) I called it a night and the next morning turned to church. The homily spoke of light. Can others see your light? Are you IT no matter what? Is it dim? Is it on? If not…..wait!!! If not? Here I’ve been figuring that I’m a failure because the light went dim. My graciousness went missing. But the pastor speaking for the man Himself, is not saying “you’re a jerk,” or “you failure” Instead he’s asking WHY? What part of your circuit is not connected? And right there in the pew, I wept for me. Then I realized the silliness of weeping for being overwhelmed and then I wept for being selfish. After that, I decided to be the light! I’ve been just so self loathing and disappointed and bored with all of our ill will. I actually went to church to collect holy water, which I did (in ziplock ware.) A little girl asked her mommy what I was doing and a mommy answered “well that’s none of your business ” to which I offered a desperate smile…The priest picked to speak of light on this day and I happened to go there to collect holy water and and a homily that acted as duct tape holding the flailing pieces of me together. I am smitten by it, to be full of a humbling guiding light for those who need it. It sets me free from being the flood light that I worry about. The one that makes me wonder when exactly it went missing . I am not a beacon, I am a shepard and so I took from the church what I needed…..
I carried home that holy water and said little prayers as I (probably not so sacrificially) finger sprinkled it out of its Tupperware around my house. Bobby with his strep throat was amused by me, but none the less committed to my cause. I became the light for our little family instead of part of its destruction. BE THE LIGHT. Those three little words changed everything for me when I decided to shine for others. Miraculously, that dim candle light of love grew wildly as it sparked the light in others. BE THE LIGHT…..
(if I ever ink up more of my body , you can be sure it will be with those 3 words)
The tornado of phenomenons have swept through my life, the dust has somewhat settled ,and recently,I have finally had a moment to step back and check out its impact …..I have been pregnant four times in the last 5 years. I am not even sure how that is possible? In the last five years I have gotten married, birthed 3 amazing humans, taken a new job and bought house. Oh, and did I mention that I did all of this at non-springy-chicken age of 42 ,while learning more than I thought I’d ever need to know about Down syndrome?
Here I sit, among the beautiful pile of happenings that are my life and I critique why things are not the same as they were before.
The superficial come first to mind because, well, they are what I see. Where did all these wrinkles come from and why hasn’t this pooch gone away yet? I also wonder why I can’t seem to get together some sort of routine or a love life with my husband. I’m just a few months out from having my third son yet I am completely unforgiving to me.
Where is my old body? My sense of order? My clean house? My unwavering gratitude? It’s all jumbled up with midnight feedings and wiping noses and teaching a class of five year olds their letters and numbers. The twister that is my life continues and the storm shows no signs of slowing.
I am not one to be at peace with its glorious chaos. Rather, I am at war with it. I’m not at war with my angel children, my patient husband or demanding job. I am on the front line with none other than myself. Why am I not handling it better? Why isn’t the weight falling off? Why haven’t I unpacked all those boxes or “Nate Berkus’d” all the rooms in my house? Why aren’t my thank you cards done? How did I let my roots get so bad? Why isn’t there a hot, healthy ,dinner on the table at 5:30?
I’ve gone ahead and put it all on me. Now, I never have considered myself an overachiever, perfectionist, or competitive, but somehow in the midst of this cyclone, I have demanded beautiful serenity. I have expected an oxymoronic existence that is an impossible feat.
So, where to go from here? I’ve acknowledged that my line of thinking is out of line. Now what? I struggle with how to stop spinning. The answer evades me….. however, a few sayings come to mind. “Live with intent,” “discipline is the difference between what you want now and what you want most,” and a favorite from the wisest man I know( my dad,) “how do you eat an elephant? One bite at a time.”
Live with intent: sometimes I find myself trying so hard to win at life that I’m failing miserably and living with neglect. I’m mindlessly eating a chocolate bar while paying bills, watching a show and half assedly answering my sons endless questions about all things ever. I’m failing us all. Staying present is so hard for my multitasking personality but it is so important. I’m missing it. I’m missing being my very best me because I’m so busy being multiple versions of myself.
Discipline: I’ve always been real into immediate gratification. So, when work has been long and therapists don’t trickle out until well after 5, we say screw it let’s just order a pizza. When weeks drag on and on because we are quarantined, and then we finally get well, I say screw housework let’s go to the mall. I have that third drink when I know it will exhaust me the next day. I trade valuable home improvement moments for screen time. I pick now over waiting…. Then the guilts come. Why did I eat that crap? drink too much? waste my day? Forget to pray? Discipline is the yield sign to regrets. Until I have more order, I need to slow down the way that yellow sign urges me to.
How do I eat that elephant? One slow, deliberate, disciplined bite at a time. I will not blink and be my high school weight or wake to find every room in the house designed the way I intended. My wants will be sloth like because my needs make my head spin and I can’t change that. My options are few. Either abandon the elephant all together because of it’s enormity OR count small nibbles as victories. That one minute plank- victory. A full, ten, uninterrupted minutes painting with my toddler-victory. A conscientious conversation over a glass of red with my husband-victory. A bed made, pillows and all -victory. A crumbless high chair-victory…and then before you know it you can see the trunk, or the tail, depending on which end you started at. That gives you the power to keep going… and next thing you know ,you are in a tanktini , lying on a beach chair, with a Mai-tai, marveling at how the aftermath of a typhoon made everything lush and beautiful…..now THAT is some pachyderm food for thought.
Facebook has a way of reminding you of the good bad and ugly that you’ve lived throughout your years on social media…a ghost of Christmas past if you will. All of your words and pictures return to either delight or humiliate you and usually we pick the most savory to re-share.
Well, I’m here to blow the lid off of my perfect seasonal scenarios, my humorous holiday cards and my chosen merry memories. I have re- read my past and every year my comments seem to consist of the same seasonal sulking :
“I can’t wait for Christmas to be over.”
“I’ve put off shopping again because I’m dreading the crowds”
“I have a Christmas food hangover. I will be so glad to get back into a routine ”
And … many other bah-humbug variations of my Scroogie self.
The truth is, I’m not here to make it right. I’m not here to tell you how I was mistaken and how I’ve suddenly seen the twinkly lights. The truth is something different all together.
The afore mentioned nasty nuggets were BC (before children) and now things are a a bit altered. Now, I would give up all of my everything just to watch the glitter in Calvin’s eyes that shines brightest during Christmas. Judah doesn’t really understand Christmas yet and Augie is still trying to adjust to life outside the womb….but Calvin, with his Christmas concerts, and constant questions about his beloved Rudolph? Be-still my heart. It’s freaking intoxicating. I love the way he tries so hard to be good because Santa is watching (our shelves don’t even have an elf yet) and how he believes in every part of the season with his whole damn heart. The way he loves baby Jesus and His story is special and spectacular. Living Christmas through his eyes is truly my favorite gift of all. Unfortunately there is a cynic in me. I recognize how with every passing season, his beautiful belief will fade the tinsiest bit and It makes my heart hurt.
Then there is the family and friend part of Christmas. I love how everyone is kind and how we all dole out more hugs and holiday cheer. There is so much joy in the Christmas parties where everyone shows up with their best clothes and best foot forward. I love all of the togetherness and trading stories of tradition.
It’s painful making sure everybody gets the pretty card and the perfect gift. But, I am reminded of no pain no gain and how the gains are so enchanting. It’s a lot of work cooking the most delicious culinary creations and preparing for the parties. It is so much getting ready that sometimes I’ve exhausted myself before the whole celebration has commenced.
Preparation steals my zero credit card balance, costs me hours of sleep and takes time that I could have spent snuggling my little baby as I watch him growing right in front of my busy eyes… But somehow I am ready or I have to be ready because it’s here and the traditions are about to keep traditioning… And I am tired or maybe I’m not. It doesn’t matter because either way it all still flies by in a hazy blaze of colorful paper.
As I trekked the remnants out for garbage day this morning, I felt the achy pang of it all coming to an end. My perfectly wrapped gifts were now shreds of boxes and paper in a heap at the end of the driveway. My family is torn apart like the paper as my parents head to Florida for four months and my in-laws follow closely behind. We will not all be together again for a long time. And I can’t help but think that as everyone gets older, we will have a merry little Christmas next year ONLY “if the fates allow.”
So this Christmas holds hints of my disenchanted Facebook posts from Christmas past. It’s so much good and so much work and then it’s gone. I feel the void that I’ve felt on Christmas night since I was a kid…. When I would climb onto the top bunk in my brother’s bed because it all just felt so lonely when it was over.
I feel that now and I feel something else too. I beg the universe and fate and God and whoever will listen to let the Christmas spirit stay still just a little bit longer. I’ll take the rushing, and spending and lack of sleep if it all just stays still. I hate letting go. I hate letting go of childhood magic and warm fuzzy family time. I hate it more than filling out address labels and fighting crowds. That memory maker that is Christmas has me all tangled up in the lights and the low and I wonder how I can just make it all last. I know everyday can’t be Christmas but I will try my damnest to put Christmas in everyday. It truly is so very worth the work. So, If you need me I’ll be handing out extra hugs, spreading cheer and hanging on to idealistic nostalgia for dear life.
First off, I’d like to say how good it was to see you again. It’s been awhile. I’ve pretty much spent the last five years being pregnant or taking care of infants and I think we both get that you being around all that is a terrible idea. Anyway, I love how we left off right where we started; how we didn’t miss a beat. It was just like old times. Thanks for those times by the way. Thank you for all the years of upping my confidence, lowering my inhibitions, improving my dance moves and making certain people more tolerable.You really helped me out in my younger years. I owe a lot of fun to you.
All that being said, I think we should probably stop seeing each other. It’s not you, it’s me. You are still you…The life of the party, the spiller of truths, the aphrodisiac of the night life. Me, however, I have morphed. I think I mentioned, I’m a mom now? and I’m not a new mom who is still under the disillusionment that her life will remain the same. I am a mom of 3….a 42 year old mom of 3. A 42 year old mom of 3 who are all under the age of 5. Yup. Would we have ever believed this back in the good ol’ days? Our lives run parallel these days. You on the fast track to fun with all of your flash and fabulousness while I am having a different kind of fun. I’m changing diapers, kissing boo-boos, and reading bedtime stories.I bet you can see how our lives do not intersect. The path that I’m on bears great responsibility and also comes with something called “mom guilt.” So, along with the headache that accompanied your evening companionship , I was adorned with shame, regret and embarrassment. For what? I am not sure. It’s not that we were dancing on tables or bringing home boys??? Nonetheless , because I have babies, you made me feel sad and sorry. It just doesn’t feel right to hang with you in excess anymore.
Now listen, if sometime I happen to be kid-less, on an all inclusive vacation, in Jamaica or Cancun, well, then,we can have a torrid affair. And maybe, just maybe ,when the kids are grown and have left the nest we can reconnect. Perhaps my husband and I will invite you to our home, out to dinner, to the movies??! But I’ll call you, don’t call me…because you belong to the free and I belong to my family.
Sincerely and without regrets,
When I first met you, I was scared of you. I’m ashamed and pained by my admission but it is true. I didn’t know what having you would entail and selfishly, how it would affect my life…..but I fought for you anyway. Not because I’m some sort of extraordinary super mom, but because I’m your mom. Period. That’s it. I couldn’t bear for others to cause you pain, I cringed to think some may not understand you,or that someone could dare to not want the very best for you. You were so helpless and little. Plus, you were mine… so, I started writing and advocating and taking giant leaps out of my comfort zone to protect you. It was fierce and It was instinct. Those days are long gone now…..
Now I fight for you because I am absolutely mad, crazy, and wild about you! I wouldn’t take that extra chromosome from you if you were holding it in your open hand. I love you so damn much it hurts. It’s weird to think that I would never take Down syndrome from you, but I couldn’t. It is part of what makes you so delicious. You are a rare coin, a winning lottery ticket, a coveted piece of sea glass.Your face filling smile and the way you work so hard are obsessions of mine….as is your perfect ratio of naughty to nice. Our family smiles so many more smiles because you are in it. We literally swoon daily. A friend in the Down syndrome world told me hearing his son say a new word is “Christmas Morning” Yes. You are Christmas morning my darling boy. Days with you are so much sweeter. You’re doing life so eloquently perfect.
You’re quiet coo of “yeeeaahhh” every single morning that wakes me with a smile. The way you grin ear to ear when I come into your room and urge for me to get you. Your quick but quality hugs complete with obligatory back pats before you run off to do all the things waiting to be done. The way you despise any type of clothing change but will oblige as long as you are serenaded. How you love music, dance and song like your mama. As Timberlake suggests, you “can’t stop the feeling.” Your adorable peg leg circular dance moves complete with arm rolls and head bops. The way you throw the most perfect dramatic tantrum that attempts to invoke anger but in contrast enamors me. How far your speech has come in just the few short months since your ear surgery. We hang on every” eee–iii—eee-iii–ooo,” every “all done” and all of hundreds of times you attempt to sing “head shoulders knees and toes.” How you start to say mama but dissolve into giggles. How you push Calvin out of the way when you feel you’re lacking in attention and how the two of you play chase together like true brothers do. The way you unsuccessfully attempt to be gentle as you put a blanket on the baby and the way you sweetly kiss him being careful not to get too close. The way you don’t ever ever stop and how you keep us forever young and engaged. We cannot be complacent with you . We love how it’s not allowed.
We have always believed in you and at the very same time we thought we had to prepare ourselves. For what I’m not sure? You do nothing but exude joy to every single person you meet.
So now I fight for you because a life without you in it seems unfathomable. It is all so very worth it… and it is not even despite the hard work but because of it. I honestly believe that the rest of the world is missing out and that we are winning at a better life because we have you in it….So, on your second birthday I still protect you with a ferocity I have never known . Only now it is not just because I’m your mom but because your worth exceeds my wildest dreams. I am so extraordinarily proud of what your life has done to this world and I love you with every piece of my soul. Happy Birthday Baby.