I have to offer a disclaimer on this blog. If you saw the video I made on Facebook, then you will notice that the pictures here are pretty much the same. In my defense, I needed to get them out. This day was like an exquisitely wrapped gift erupting with goodness. I had to just give you a peek inside until I had time to open it and all the feelings could pour from my pitcher.
I’d like to start this with an analogy. Apparently, in Super Mario Brothers there is some thing you do and you unlock this secret underwater world. I don’t know if it’s a code like: left, right, up, down B, B, B., or a special hidden mushroom you find. I’ve never found it and it very well could be urban legend. After all, I think my brother is the one who told me about this little nugget and he has never found it either. Anyway, if you were a Super Mario Brothers junkie like us, then you understand the amount of endorphins released when you finally reached the next world……..let alone if you could get to an unknown world that people didn’t know about………do you see where I’m going here?
Having a child with Down Syndrome is that code, it is that hidden mushroom. I have the privilege of being allowed in this secret underwater world that I did not even know existed! Let’s talk about getting the diagnosis. If you read Judah’s birth story, you now understand that it was a devastating blow and it was filled with: smiling, crying, caring, family and friends. What you don’t know, was that it was also filled to the brim with strangers. It was people who were a friend of a friend or part of the Down Syndrome community. It was our Facebook acquaintances who had someone in their life with a disability and people with DS blogs. All of these people all came rushing to our aid and they offered something no one else could; experience. These kind, knowing souls went out of their way to promise us that we would find joy. They gave us much needed advice and prayers when our Judah was sick with RSV (that’s a whole different story for a different time.) They sent us information, names of doctors and they bought us books. They embraced us with open arms and held on tight until our hearts could heal… and they knew it would. I didn’t quite grasp the massiveness of it then, but now, my heart feels so full it pushes a lump to my throat; that one that keeps climbing until tears are brimming. Now, you tell me…when have you ever had a rough day and had complete strangers flock to save you? Things like this do not exist in the regular world. We do not reach out to friends of friends to tell them that it’s okay, they’ll find another job or be able to fix their car. We do not message strangers to say that they’ll eventually be able to handle the loss of their loved one (or pet) or that they will someday have the family they have always dreamed of. This only exists in this secret world and when you are one of the lucky few who have received it, well then, you must also release it. I now have an obligation to pass around justified kindness and it is the best damn feeling in the world.
Some of my first experiences with Down Syndrome were on social media. As I sat in my hospital bed, Bobby on his cot and Judah snuggled in his glass bassinet ;we researched. We searched. I took to what I knew. Pinterest and Instagram gave me comfort as I found many who shared our story. The first blog I read was Kelly Hampton‘s and if you haven’t read Nella’s birth story, I recommend it. The beauty of her writing is intoxicating and the similarities to what we went through were remarkable. Actually all the people I found share similar scenarios. It is so wonderfully weird. There were many who thought they knew during their pregnancy and even more that shared our grief. Since those days in the hospital bed I have connected with so many more IG families. The result has been enchanting. I have never found so many good-hearted people in my life and am proud to share this journey with them. I am a better person because of them. When you see people like @rubysrainbow, who raised $121,000 in less than a month so that kids like her Ruby and my Judah can go to college… you want to do more. There are brave souls like thatdadblog who chronicles his journey with Will through hilarious pictures and touching YouTube videos. nothingdownaboutit and @meeshellphoto are absolutely stunning on the outside AND have a heart of gold. They share their journey through photography and blogs and raise money to help awareness for their boys. @happysoulproject is home to a darling princess named Pip. Pip’s mommy blogs, has a shop, does appearances and dedicates her life to helping others see life a “wee” bit differently in Canada and all around the world. There’s @lifewithrubyandconner who has adopted two littles with Down Syndrome and is an advocate for adopting those with special needs. Beautiful @nicoleoreste does not speak any English but our sons are the same age, share the same magic, and have made us break through the language barrier. @gabe.the.babe.and.co is my guilty little pleasure because that kid is so damn cute I could look at his pictures all day (plus his mom is hilarious.) I could go on and on about the different people I know in this world who’ve shown us so much. There is a model who has a son with Down Syndrome and siblings that rave about their brother or sister. There are countless warriors who share their stories of hospital stays with an uncanny way of still making you laugh. There are athletes and wine drinkers and most importantly, there are children who’s families love them in the grandest of ways. There are adults with Down Syndrome narrating a rich and full life. It is all there for the taking. Every single person is extraordinary. It’s not quite unicorns pooping rainbows, but it is damn close. It is a reality that I never knew was. It a place where people are generous with their stories,their hearts, their time and their commitment to this cause. Again, I have the honor of springing all this goodness back into the universe and it brings such complete contentment.
….And our family and friends, oh my dear family and friends. Well, they have the code too if they want it. Before Judah, I can say our relationships were like an angel food cake. They were light, and sweet ,and well… fluffy. Now our relationships more resemble a molten lava cake. They have layers and decadence and gooey goodness is just dripping everywhere. Everyone I love is dedicated to this cause. I keep trying to come up with my own words but I keep coming back to the Counting Crows lyrics “…and the kindness falls like rain,” except this kindness is a fecking monsoon!!!
Last but certainly not least, this day. World Down Syndrome Day. March 21st 2015. A day I never knew that was. A day that now will be significant and fufilling to me for the rest of my life. It was, in Calvin’s words, it was just marvelous. We rolled in deep…. Bobby, Calvin, Judah and I made our way, as well as my oldest and dearest friend Kristen and her daughter Emme. As we arrived nearer to the event, grown up catepillars danced in my belly. Tears welled up in all of us. They welled in anticipation, in the love we know we would be met by, in how far we had come. Gigis Playhouse put on the luminous event and their blue balloons bopped everywhere. My brother’s family and some friends beat us there. I swelled as I saw them embrace this new normal. They dove right in. They bought raffle tickets and waited in line to get the kids’ face painted. Get your shiny yellow slickers folks, that monsoon is coming again. Then…. a woman looked at me bleary eyed and longing. She ogled Judah and for a minute, I thought I knew her. Oh, I knew her alright. She had just found that hidden mushroom. She said that she just had a new baby with trisomy 21. In my overwhelmed state I forgot for a quick second that trisomy 21 was Down Syndrome. I rarely hear that term and this heart wrenched woman bewildered me. She was the first person to approach me at the party. I was taken aback, but recovered quickly when I realized she was in the club. I wholeheartedly congratulated her. This, by the way, is the only acceptable response when someone tells you that their baby has Down Syndrome. Another lesson learned (and felt) when you enter the underwater world. So, I scanned the room for this woman’s baby and asked if he was there. She told me he was born early, in the NICU and had heart problems. All the while she managed to barely keep it together. She was at the event!!! This I did not swallow until much later, but wow….that is acceptance and commitment at its finest. We talked. I threw it all out there. I consoled her, told her how far Judah had come since his illness, I assured her, I hugged her….and just like that my ticket had been punched. It felt incredible because it was my truth and because I knew it would be hers.
Gigi’s was fascinating. Happy people floated everywhere. Some knew Judah already. Many asked to hold him or who he was. I won 2 raffles!! After, I felt bad like I probably should have given one back for a redraw. In my giddy state I literally wasn’t thinking. I owe ya one Gigi’s!!! I looked at the many pictures I tried to take during the event and I focused on the background people, the ones I didn’t have a chance to meet, the ones I didn’t know. I searched to see if I was missing something and investigating for a hint of despair. There was none. This world really does exist!!! Now , my journey is still young and I am sure there are challenges that we will face, but I am so sure they will be outweighed by the splendor. With the apprehension of a too new couple moving in together, I want to say “I wouldn’t change a thing.”
As I googled “inspirational music” to pair my pictures for my slideshow, I found a gift. This gift was handed to me by a gentleman named Bill Withers in a song called “Lovely Day.”
I picked the song because the day really was lovely. I only closely listened to the song later and this one verse catches my breath still:
“When the day that lies ahead of me, seems impossible to face
“When someone else instead of me, seems to always know the way…..”
My Judah has always known the way. He has always held the code and he is the reason I will gladly spend my life paying forward his gracious gift.
(Part of this story was written before Judah was born, before I knew the blessing he would be and before a piece of God was handed to me… swaddled in a pink and blue striped blanket.)
This is a story of love, faith and the proof that miracles really do exist.
So, to tell this story, I need to rewind bit and tell a different miracle story from a different time. This story is about a couple in love and ready to start a family. However, like many families, they were unable to do so. They tried for four years, were tested and prodded and even put themselves on the adoption list. This story takes place in the early 70’s so there was no invitro- there was only prayer. Well, luckily for this couple, prayer was all they needed. As the story goes, there was a statue of Mary that traveled from church to church around the world. If you were lucky enough to have the Virgin Mother come to your church, you were supposed to write down a wish and place it under the statue. This couple wished for a child. Nearly three weeks later, the woman found out she was pregnant. Nine months later, on August 3rd, the baby did not come. Twelve days late and on the Assumption of Mary, August 15th, this child did decide to make her arrival… and that child was me.
I tell the story of my birth because the Virgin Mother also played an important role in Judah’s life as did prayer and faith.
Now, I’m going to fast forward a little bit to 2013. Bobby and I were anxious to give our little one year old a sibling. We didn’t get the chance to be too anxious though, because I became pregnant fairly quickly. On my 39th birthday we decided to share our news. Calvin wore a t-shirt boasting “big brother; March 2014.” We had him wear it to my birthday dinner with our parents, we sent the picture to all of our loved ones, and we carelessly shared our whimsical announcement. The next day we went to the doctor as a family. We received news that shook my world like it registered on the richter scale. There was no baby on the ultrasound anymore. There was no heartbeat. As quickly as we became the excited, expecting, family; it was taken away. I had the toughest time. I thought about the baby we would’ve had often. Something as simple as getting myself a cup of decaf sent me into a tailspin…I’d think, “I don’t need to drink decaf anymore” and then become inconsolable. I cried a lot. The weird thing is I didn’t think I would be this puddle. I knew people who had miscarriages. I doled out phrases like: “there must have been something wrong with the baby, so it is for the better” and “God always has a plan.” I was genuinely sympathetic but never quite understood the enormity of it all. I was of the opinion that you moved on, you had another baby and there was no reason for extensive tears. Well, for whatever reason, I cried and I cried and I cried. I cried for Calvin’s brother or sister, for the weeks spent caring for my unborn child, for the embarrassment of the birth announcement boast, for all the mommies in the world that had ever experienced this hurt. I cried for the callousness of comments I made to those I knew who suffered and for the casual way I was told that my baby was gone. I cried for my pain and I never knew how I would ever come back from it. I also hated myself for being this way. Clearly, I was becoming a liability to those I loved. They carefully consoled me and took care not to mention anything “baby.”
Then….. I decided to move on. I do this often with pain. I just can’t stand my own sad, moping, pity-party anymore and so I climb out of the well… one slow rung at a time. It was a tough trek but everyone around me played their part. My mom gave me a statue of the Virgin Mary with an accompanying prayer. She also gave me a Novena to say to St. Anthony. It seems my mom literalized the phrase “she needs all the prayers she can get.” So, I prayed. I prayed every day. I prayed for joy and to become pregnant again. The last day of my Novena to St. Anthony just happened to be March 31st. This was the same divine day that I would be able to conceive and the same day that the baby we lost would have been born. I was in such disbelief. These three incidents lined up like Orion’s belt and so I had to Google St. Anthony. I needed to know more about this Saint and discover why he was leading me to miracles. The first line I read said: “St. Anthony was born in Portugal in 1195; on 15th August”…. and THAT is when I knew I was pregnant.
This time in our life was not an easy one financially. I was again displaced in the city district and substitute teaching . Bobby was trying his hand at entrepreneurship and we had unwillingly succumbed to Obama Care. It was a scary time. I had to leave the only OB-GYN I had ever known and search for another in a willy-nilly way. I found a decent joint, albeit not close to what I was used to. The sudden change was a sucker punch. The doctor was a kind man and empathetic to my previous situation. He put me on progesterone and watched me carefully. He ensured that I would not endure further heartache. The time came when that window opened; the small window where genetic testing was at its optimum moment. The nurse asked me if I wanted it done. With Calvin there was no question. It was automatic and I waited for the results as if my breathing depended on it. When the results came in the form of a yellow postcard, I literally kissed the paper and thanked the Lord above. So, why now the hesitation? I talked it over with Bobby, with countless friends, with family. Slowly, as I debated… money being the most obvious of obstacles, my window was closing. Obama Care did not cover this testing and the cost to us would be near one-thousand dollars. I went back and forth if this was indeed a small price to pay for peace of mind. In the end, through weeks of procrastination, through moments of pros and cons, the window was shut and locked for me, as I convinced myself it wouldn’t have changed anything anyway.
As the pregnancy progressed, we decided we really wanted to know if this baby was a boy or a girl. I felt so different that I was convinced it was a girl. The day we had the ultrasound done, the technician was put in the interrogation room. I shined that light directly in her eyes and demanded things like “does the baby look okay?” “ Is everything normal?” My fear of Down Syndrome had not subsided and anxiety twisted knots inside me. It seems my interrogation tactics were not as scary as I thought. The only response I was gifted was, only the doctor can really tell, you’ll discuss it at your next appointment… and she definitely could tell the sex. She handed me my secret in an envelope and sent us on our way. The way she said it made me think I was having a boy and what she didn’t say kept my fears alive.
Weeks passed as we celebrated the gender reveal. I tried not to cry as I learned I was having another boy. I gave myself the popular pep talk that it would be easier and girls were a pain like I was. I even tried “hey, it will be cheaper because you already have boy clothes.” I’m pretty good at talking myself down from a ledge and I almost had myself sold. Things were okay. I had a job, I looked pregnant instead of that “I just downed 6 beers and some hotdogs” look. I was even heading back to my old doctor. I took the stand, pleaded my case and won!! They were going to take me back. The downside was that I never DID get that ultrasound analyzed. It lurked in the back of my mind, but it found sneaky hiding spots to stay in.
So, there was the day. I was reunited with my old doctor and it was like we didn’t miss a beat. We got right back into our old flow where I did all the talking and he smiled gently telling me all was fine. Then, I said it. “Doc, I’m really worried about Down Syndrome. Do you see anything in the ultrasound from my other doctor that would suggest it?” I was met by an eager no and an inspection after. He said he didn’t see a thing but suggested I get another ultrasound just to be sure. As I trotted to the scheduling desk, we went back and forth trying to secure a date. That’s when the ultrasound tech walked by. Perfect. She was available right then. I walked in and we watched my baby, in 4D no less, moving and we celebrated him being cute. We giggled at him, she confirmed that he was most certainly a boy (cue little stomach drop again) and then…..”did you have the genetic testing done?” I went into full blown panic mode. My cheeks got hot, mouth dry and how did all of the sudden my tongue get too big for my mouth? I said no and pretty much blamed Obama. I asked if she saw something. She replied “not outwardly”… well, that’s a crappy answer. She asked me a series of questions, one being how old I was and something about how I would never do anything about it anyway so what does it even matter. Then there was a lot of stumbling and stuttering on her part, in response to my terror, I’m sure. Eventually she shared, “I only asked because you are older.” Wait WHAT? She had JUST asked me how old I was. Sirens were spinning in my head. This is it I thought, he has “it.” I was so mad. How could she ruin my perfectly orchestrated ignorance? How could she assume I wouldn’t do anything about it and then be so careless?
What ensued next can only be described as pure coo-coo for Coco Puffs. I looked at every Down Syndrome website ever known to man. I spent four hours googling and asking questions on message boards. I showed my ultrasound to a complete stranger so that she could analyze it. I ignored my tangible world to analyze and re-anaylze what was happening in my brain. I frantically searched the screen in front of me for signs. I was tired. Women with babies that have Down Syndrome are tired. Check, he has it. No history in my family, phew he doesn’t have it. Ears are set low, he must have it. The doctors would have noticed by now, ok he doesn’t have it….and so this went for hours and hours until I was being strangled with information. Poor Bobby was so concerned with my behavior that he immediately called the doctor when he came home. He tried to stop the madness. The nurse assured him that if something was wrong the doctor would have let me know. I had a million excuses why the doctor couldn’t make the call and so again, I turned to prayer. I was going to revisit my Novena and pray to my girl Mary. Bobby agreed that I should revisit my old prayers and to him, I revealed a revelation. I told him… prayers only work if what you ask for is good and true. I told him that praying for your son to NOT have Down Syndrome didn’t seem good and true to me. Bobby suggested I pray that our son was healthy instead. Well, that sounded rational (as Bobby often is)…and so I did. I prayed with all my heart, every minute I could, with prayer hands clenched tight as to will it to come true. I prayed for a healthy son and for worry to leave my mind. This went on and on for the rest of my nine months. I brought my mom as a shield to my next appointment and I asked the doctor if he saw the signs I now knew so well. Again, my fears were denounced by the doctor and my mother urged me to let the obsession cease. Outwardly I did, and inwardly I suffered with prayer as my chaperone.
We toyed with different names for our baby boy, Judah always being in the running. When I went to church “Judah” was the place named in the very first reading. A sign!! Then, I called on my new best friend, google and found the name meant “praised by God.” That was it. The name had to be Judah. If prayers and Saints and Virgin Mother’s couldn’t protect him then his name would. It was the best and the only thing we had control over and so hell yeah we were going to go there. The name was decided.
I will spare the medical jargon of how I ended up in the hospital and save you from the yawns. A month or so before I was to deliver; I just felt like I couldn’t. I couldn’t climb another stair, cook another meal, sleep another night. It was a different tired than with Calvin but then again everything was peculiar. I left work for some well needed rest and to enjoy my Thanksgiving break. The day before Thanksgiving, I headed to the doctors for a routine movement check that went awry. He wasn’t moving enough. His heart beat was weak. Then, on his ultrasound and pumped full of sugary juice, we couldn’t get his groove on. So, one trip to the hospital later, I was sent home and asked to come back Saturday for another movement check. The request was almost made to sound insignificant.
My appointment was at 9:00am on Saturday and the debate of whether to shower or not was longer than it needed to be. Eventually, Bobby and I came to the conclusion that showering was unnecessary as we were headed to my nieces party that afternoon. Obviously, it would be best to be fresh and clean for such a soiree. Again, the baby was not moving enough, again I had sugary goodness, again the ultrasound did not indicate wiggles and again I asked if “everything looked alright.” I hoped the sweet, blonde, tech knew this was code for “does my baby have Down Syndrome?” Her, “No, he’s fine” was the most astounding I had heard. Yay. The prayers were working. I was sent back upstairs and the doctor declared I would be staying. We would be getting that baby out of there to be on the safe side. So, just like that… shower-less, without the magic potions to keep a girl looking pretty, and without as much as a hug, kiss or bye-bye to my first born, I was admitted. Our life was about to change as we knew it. Not in the way like, you have another child, or your hair is now platinum. But more like, if I saw old me on the street, I would not even recognize her careless ways anymore.
Okay, so here’s where words like Pitocin and epidural come into play. Words like blah, blah hours of labor and pushing and nurses and everything labor. These are all, sadly, sidebars. These precious moments, the ones that are scattered on mommy blogs, the ones that put Times New Roman to blank word documents, the ones that new moms cry tears of joy about; these are not the noteworthy of documentation to the new me. Oh, they were “the talk” when Cal was born, but with Judah they are just motions. I still don’t know if that makes me happy, makes me sad, or just makes me. I am proud of one defining moment. I called a kind, generous, nurse friend of mine the moment that the time was near. She rushed to be by my side and smiled with gentle, reassuring eyes. The whole time I labored her presence was a true gift. When my baby’s heart-rate dropped, a blur of frantic scrubs rushed into our room, I searched for her heavenly face and I cried. Nerves and tiredness overtook me. My friend and my Bobby reassured me as I feared my baby might not make it. At this one moment, I felt: genuine , unconditional, I don’t care WHAT you have, kind of love. When they asked me what was wrong, I uttered through embarrassing sobs… I just want him to be okay. They smiled guaranteed grins and then, he was. Shortly after, he was sent to me. There was laughing and heartwarming glances. His warm, teeny, wrinkled, loveliness was placed on my chest. I stared deep into my friend’s eyes, begging “is he okay?” She replied with the warmest, truest. ”YES”. All I could speak was, “I can’t see his face.” Bobby reluctantly showed me. He knew what I yet didn’t. No one did. No one believed us. I recounted my fears to my friend later. I remember her sympathetic response well, “no wonder why you asked me that, you had a panicked look on your face.” The doctors, the nurses and specialists all needed convincing. Nobody quite saw those almond eyes and sweet smushed nose like we did. I said it. I said what I had been internalizing all along. I irrupted to the room and I hazily spoke : “we think he has Down Syndrome.”
Judah was thoroughly inspected . Professionals waivered. “We see what you see, but we don’t.” Blood tests were ordered and curious glances were given, but Bobby and I knew. I purged my knowledge immediately. We told our family and friends. I withheld happiness. I suffered. Sadly, baby Judah waited. Miracle Judah who was brought to us all through prayer and love and desperation… had to wait. He lay peacefully and perfectly content in his luminous bassinet as we agonized. We inspected, absorbed, and embodied all that we knew what was but couldn’t believe that would be. We were handed a giant package of information but told not to look at until we knew for sure. The diagnosis was the butterfly that could not yet be captured
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Shame drips off my being as I recount the next portion of our experience. I still squeeze Judah so tight that I hope I squeeze the memory right out of him when I think about it. We sobbed. We stared. I uttered that this was not what I wanted and I thought so much worse. I slept in minutes and couldn’t eat. My moments of slumber were filled with nightmares of me spitting out glass. I googled this in my insomnia to find that it meant insurmountable grief. Ahh, well , that at least made sense. Calvin came to visit with smiling eyes and a “big brother” shirt. He was perfect at taking in the joy of Judah and I longed for him to be my only child again. As Calvin’s proud, happy, big brother face was grinning, a doctor declared with a careless nod to answer our uncertainty. The pediatrician’s response made me need a sweater. Our parents shifted uncomfortably at our pain. Calvin’s love never wavered.
What seems like years later, Judah and I were wheeled out of the room of despair and into real life. The hospital wore Christmas decorations crisply and people smiled at me with such goodwill I could touch it. I glared inwardly “you don’t know” with a holiday, new baby grin, plastered on my face.
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This story does not have a sad ending. It has everything but. Friends, family, kisses, casseroles, gifts, and God prevailed. Every single person rose to the occasion. Warmness fell like glitter on our family as we fell in love. Our Holy baby was bigger than us. As we looked at the grand picture, we knew that Judah was the phenomenon he was supposed to be. The glory followed the grief and this perspective couldn’t have been found without comparison. So, please do not read this and feel bad for us or for our pain. We needed it to be where we are. Do not feel that you need to offer us “sorry’s, ” although, we know the good place they are coming from. Just know this… Our tale is one where Judah was able to put us in a unique space. He taught us how to relish joy and how to see it everywhere. I mean everywhere!
As a side note: 50% of babies with Down Syndrome have heart problems. Others have hearing, eyesight, thyroid or digestive issues. At this point, Judah has none of these. It looks like Bobby was right all along. Judah’s health was really the only prayer to be answered… and what is good and true….well, I cradle that in my arms every day.
International Women’s Day, “Dancing Man” and the hashtag #morealikethandifferent , really got me thinking this weekend. The combination of the three has unlocked an urge to: “disperse kindness like dandelion fluff.” This quote is stuck to my mirror and is supposed to serve as a reminder, however, it often goes unnoticed. Sadly, so does its message. This is not to say that I am unkind. I was never brought up that way. I have never been malicious or sinister by nature. I just feel that the effort of kindness is such an important gift to others and if I can give it out freely why am I not offering it more?.
First, lets talk International Women’s Day. I was never considered a “girlie girl” growing up. I had two brothers and was often found on our driveway playing basketball with the neighborhood boys. I use the term “playing” loosely as I think the only one that ever passed me the ball was my dad. I remember one incident where us kids went to the bank with my dad and the teller called “bye boys” as we were leaving. Not my prettiest moment. Anyway, I continued to gravitate towards guys later in life. I was the one girl doing shots or playing hold’ em and I could keep up with the best of the boys. I prided myself on my tough chick facade and was slapped more than once for hanging out with someone’s boyfriend. I was anti anything girlie and I was damn proud of it. Now, I’ve lived with boys for over 10 years and I just have realized what I disservice I did to my younger self. Yes, there is an ease of living with the male species and you will most certainly get your way with them. Start with a few pouts, sprinkle in a note filled with exclamation points and finish up with a few minutes of the silent treatment… BOOM! the world is yours. However, a guy will not tell you that you look beautiful, even when you don’t, but just because they know you need to hear it. Men are great but they aren’t us. They don’t possess the art of perception and they don’t know the right thing to say at the exact moment you need to hear it. I’ve never met a man that says: “hey, lets cook so and so dinner because they seem busy with their new baby,” or “I should really send my buddy a thank you card for that shirt he got me,” OR “I should buy my buddy a shirt for his birthday tomorrow.” Stuff like that doesn’t generally happen. Guys don’t usually notice our subtle highlights or our not so subtle hints; but wouldn’t it be weird if they did? This is why we need each other. We must use our powerful intuition to sense when our fellow woman is in need, we must fly off to save her and wield words. Our words hold such great power and they can be our strength or our kryptonite. They can be used for the best intentions and their pain can sting like no other. So why not vow to build each other up? It’s so easy. It’s “you look great today,” it’s “how are you doing?” it’s winking smiley face, it’s “I love you” or my personal favorite, “I am on your side.” That’s it. We have the power to make each other’s day so why would we EVER choose anything but? To all my girls out there. To my close friends, my face book friends, girls that I have never met in person but I now “know” through the Down Syndrome community. To Grandma’s and store clerks, and bus monitors and nurses. To women fighting for their life or fighting a battle I know nothing about: I love you. I love your spirit, your strength, your sensitivity and your big giant heart. I love you so much and I vow from this moment on to do nothing but build you up because I have the power to do just that!!!
Now, although this seems like a fitting time to step down from my soapbox, I must march on. I must not only fight for the women of this world but for others as well. I must carry on and on and on and on….So, on the Today show this morning there was this piece about a man who had less than stellar dance moves and a not so coveted physique. A bystander saw his moves and proceeded to record him and later ridicule him on a YouTube video that went viral. He did so anonymously, I might add. The cowardly lion has nothing on this guy. I did not see the video and will not watch it as to “take a stand.” Apparently now days I am the self-proclaimed proprietor of the underdog. Anyway, a group of women (there we go being awesome again) decided to take these proverbial lemons and turn them into pure magic lemonade. The women’s group is raising funds to throw this man a dance party that will be attended by celebrities like Pharell. Click here to watch the Today show video. As I watched this, I could actually feel the metamorphosis that has taken place in my soul. Here I was, silently applauding what these ladies had done; cheer-sing them with my coffee. Pride-filled tears stung my eyes as I realized, I forever want to be on this side of the Mason Dixon line. I no longer wish to be chuckling at the lack of this man’s swiftness. I would much rather be the one dancing with him to the beat of HIS different drum. What is “cool” has totally changed for me and I feel like (praise God) society is in on the movement. Different is beautiful and sameness is silly. Why would we want to be all alike? What a boring world it would be. This is my mentality now. This is a complete 180 from the high school girl who wore her peer pressure on her sleeve. I’m proud to say beauty has a complete different meaning for me now. Beauty is the groups of people fighting for the unlikely winners of the world and oh my; what a wonderful time it is for my son to be alive.
My love for the hash tag #morealikethandifferent may lead you believe that I am indeed contradicting my above mentioned point, that I want it to be both ways. You may think that I want my son to be treated the same as everyone else but that I want to celebrate differences. I guess you would be right. It is a contradiction of sorts. What is the same about all of us is that we are all different. Whoa, did I just blow your mind right there? It’s the truth. We all have our achilles heel. We all need help and we all want to be happy. Today I read Kelle Hampton ‘s blog, as I often do, and she spoke of our children with Down Syndrome becoming our teenagers with Down Syndrome. These teenagers wish and want just like other teenagers and just like all Down Syndrome milestones, even their wishes take longer to come true. Imagine wanting the college experience ( even if you don’t know what that looks like for you) but knowing that it will never happen. Well, I for one, cannot stand the wind being taken out of even one person’s sails. Not a one! Everyone deserves happiness and though it’s a long way off for me, my son deserves a shot at college if that is what he wants. So, I am taking the Ruby’s Rainbow Pledge and I ask you to do the same. In honor of World Down Syndrome Day on 3/21/15, Ruby’s Rainbow would like to raise enough money to send 21 people with Down Syndrome to college. My skin tingles just thinking about the barriers they are breaking!!!
Here’s what you do: .
- Donate just $21 at https://www.rubysrainbow.org/321-pledge/
- Pledge to be kind and compassionate to peeps of all abilities!
- Spread the word. Ask three friends to take the 3/21 Pledge and donate $21.
IF you can’t pledge to Ruby’s Rainbow than pledge this…. Pledge to build people up, pledge to show them respect, pledge kind words and kinder actions. Pledge to treat all people with care because you have no idea how fragile their package is. Pledge to try and see beauty everywhere and in everyone and always pledge to see everyone as #morealikethandifferent Judah and I thank you very much ❤
At least once a day… I am with my family and think “this is everything.”
At least once a day… I’m afraid if I don’t leave the house and everyone in it I may go clinically insane.
At least once a day…I inspect every wrinkle and watch new ones appear.
At least once a day… I breeze by a mirror and think: “hey, I’m not too bad.”
At least once a day…I miss my twenty-something body
At least once a day…I decide I’m too tired for the gym.
At least once a day… I think I need a whole new wardrobe.
At least once a day… I worry about bills.
At least once a day… I swear, NO carbs.
At least once a day…I have a piece of bread.
At least once a day…I think, what if I was still single?
At least once a day…I stare at my husband,without him knowing, and take in how beautiful his face is.
At least once a day…I want to yell at my husband for not doing it the way I would’ve done it.
At least once a day…I say to myself, “pick your battles.”
At least once a day…my son fights with me about clothes, food and bedtime.
At least twice a day…I pick my battles.
At least once a day… I think that I need a drink.
At least once a day… I think that I have a drinking problem.
At least once a day…I add something to my “to do list.”
At least once a day…something doesn’t get crossed off my “to do list.”
At least once a day…I silently hand out blessings to the women of the world who stay home with their children all day.
At least once a day…I wish I could quit my job and be home with my babies.
At least once a day…my stomach is in knots over my sick dog.
At least once a day…I look deep in my dog’s big brown eyes, and I tell him how much I love him.
At least once a day… I make my toddler cry.
At least once a day…my toddler makes me laugh.
At least once a day…both kids are crying at the same time and I think this is what hell must be like.
At least once a day… for five minutes or less, both boys are snuggling with me and I think this is what heaven must be like.
At least once a day…I don’t feel like cooking dinner, doing chores, being a mom or being a wife.
At least once a day…I am jealous, resentful, conflicted, obsessive and fearful.
At least once a day…I talk to God.
At least once a day… I forgive myself.
At least once a day…I count my victories.
At least once a day… I say “I made it another day!”
Finding The Joy 