Having it all means staying middle. Sunday ease is washing your face Saturday night and living to 80 means eating oatmeal for breakfast now. Life itself is a plan if it wants to be sustainable. It is how to enjoy the shit out of this one trip here while staying as long as possible. And when we learn to live at the median we allow ourselves to have more. Less equates to abundance and abundance means we lack in extremity. When we are just being, we are cellularly and globally elevated.
Love. I know it as this feeling of warmth, intense protection, and an almost ache in my heart to be closer. But what if love was also God? That’s an idea that was first revealed to me on the “we can do hard things” Podcast. Elizabeth Gilbert (writer of “Eat, Pray, Love”) was a guest on the show and she changed everything for me. She suggested that God is within us; a concept not entirely new to me. But she added, God is love. Love is unwavering. Love is :patient, forgiving, and always present. She posed the question “what would Love want you to know?” Then she lets God/Love flow through her as she answers. I decided to give it a try and below is my very unexpected letter from Love to me:
Dear Love, What would you have me know today?
Hi sweetheart. I see how you walk around constantly judging yourself against others; wondering if I’m watching to see how you measure up. I know you think there is this gold standard that I’m hoping you strive for. I know you believe that I think you could be doing a much better job. And I know you think I think you are failing at this thing called life.
I also know you know me. And you know I could never say an unkind word to you. I know you see how in awe I am of you. The way you read others, care for them, try to be just like me. It takes a bleeding heart to know one, believe me.
So why the doubt? Why do you forget to believe that I love you. Good or bad is a perception sweetheart. You are always good simply because you are alive. I’m so glad you’re on earth. You have so much to teach this world.
But you must do it from a place of loving yourself, believing in yourself, knowing that whatever you do, you will not be abandoned by me. No one is pointing and laughing at you. No one ever will again. You are safe from being made fun of, from being belittled and bullied and abused. You don’t have to be extra nice to people to earn human decency babe. It’s there for the taking simply because I made you.
I’m gonna get tough here for a second.
Stop playing small when you were born to be big. I made you that way darlin, so be it. And don’t worry child. You worry so much if you are good and bad that you’re missing the very boat that’s headed to the island of greatness. Be aboard beautiful. Soak all this in that is you and for me sakes stop doing a double take in the mirror searching for flaws. We all have them. Everyone of us. But those aren’t the parts that make us shine are they? They are a part of you. They helped write this story….but spoiler alert, it’s a choose your own adventure. You decide how main your character is, not your flaws or your past or who you are in comparison to anyone else. It is about how you wear your character, how you own her, how you know that I am here cheering you on sweetie every damn step of the way. I am not over here telling you all the reasons you don’t deserve a wildly beautiful life. I’m here to remind you of all the reasons you do. So ask. Please. It brings me great joy to remind you how very loved you are.
We hit the ground running In September and we work like dogs through Christmas. We are all in. With fresh energy and new ideas, we are rejuvenated into a space where we can handle all throws of life….harvesting, fall sports, new school year, family gatherings, gift giving and gift getting.
And then we can’t. We can’t be those productive people we were for one more damn second. So we eat the cheese and we drink the wine. We stay up too late and our clothes don’t fit right. Our skin stretches , our bellies bulge and we prepare to be reborn into the New year. …. When we disappear. This time is for self care. It’s for tending to all the wounds you gave yourself when you worked too hard. And then its reward is spring. It is a beautiful becoming. It is an evolution. We are the same, but a little taller. We observed and so we took better care of ourselves than we did during our last metamorphosis. Our ultimate trophy is to then revel in this growing version of ourselves and believe we can be the person we will need to be for September when we work like dogs until Christmas …
We are in another new era my darling. This isn’t the one where I tell you you are not meant to be the world’s inspiration. I’ve said that many times. This isn’t the one where I decide that I will be okay, if you never live on your own or go to college. And this is also not the birthday post where I remind you how you are my greatest teacher. I’ve bright-sided your disability so much I can’t see. I don’t even recognize us in your old birthday posts. It’s all grandiose revelations and unbridled positivity. It’s all bullshit.
Besides when you were a baby and you were hard because babies are hard, I have not been telling the whole truth. Raising someone with zero safety awareness is terrifying. Losing you this summer, TWICE, was absolutely horrifying. Trying to help someone put on shoes who is stronger than you and who isn’t feeling shoes that day is physically exhausting. Trying to decipher why you’re throwing things across the room and breaking things is maddening. Wondering if your class is the right place for you and if I’m doing what is best for you fills me with anxiety. Taking care of all your appointments, medical needs, and supports is mentally draining. And Changing poop, wiping boogers, and cleaning pee soaked sheets 9 years later is fatiguing.
So there you have it. That’s the dark side . I’ve stripped away the sun and the rainbows and the unicorns and I’m revealing how this life brings me to my knees.
We are in a new era. The age of acceptance. Not acceptance for your diagnosis. That I made peace with when I almost lost you at 18 days old. But acceptance for us. For our family. Acceptance for the different way we must live. Acceptance for locked doors , and shoe options. Acceptance that I can’t always fix your meltdowns. Acceptance for myself and my choices and that I’m doing right by you simply because I love you. Acceptance for always having to be vigilant about you and acceptance for no days off. Acceptance is not a lie. It is not pretending that everything is fine. Acceptance isn’t shiny and it certainly isn’t perfect.
Acceptance, by definition, is “the action of consenting to receive or undertake something offered. I receive this life’s challenges. I consent to hard days. And only because of that can I receive the beauty of you for exactly who you are . Only because of the hard, can I consent to some of the most joyous moments of my life. The way you laugh, your foxy trickery, your vigorous clap when you love something. When you hold a full conversation with us, your sense of humor, your excessively long kisses. These all exist despite, or maybe because, it’s hard. So, this is the birthday post where I tell you what you already know. It is okay to be angry. It is okay to have happiness. We have the capability to hold so many feelings all at once that we should never pretend it’s all joy. We shouldn’t always be just fine. It’s unrealistic, it’s not whole, and most importantly, it’s nothing you would ever subscribe to.
Happy birthday sweet boy. This is the post where I remind myself that you’ve been right all along.
Sure, you can wail at the top of your lungs and you can wear me down like I’m getting the Chinese water torture. But you make me laugh like no other. Your curiosity, uncharacteristic vocabulary, and matter of fact-ness is downright hysterical. You have a way with words and a way of questioning and expressing that endears anyone you meet. You’re so engaging. You’re so committed. You’re so enthralled with this particular life of yours. It’s contagious, the way you live life. You want zero help, minimal guidance and in actuality you need very little of either. You my dear, do not need to be raised. You need to be guided, encouraged, soothed and supported. The rest you’ve got all by yourself buddy.
I always try to theorize your boldness. Is it a third born thing? A boy thing? An ADHD thing? And astrological thing? I don’t have the answer for that. I’m realizing it doesn’t matter. Because you do not need to be corrected, fixed or dimmed. Everything about you screams that you will be able to handle yourself through anything. You will take shit from no one (I know, one strike) and you will always be absolutely fine. So then why? Why would I even want to turn down that fierceness a notch? The truth is, if I ever did that it would be for me, not you. Sure, you drive me mad when you cannot accept why you cannot watch an R rated movie but that means you won’t accept anything less than your desires. And yes I wish I could stop you from perseverating on things like “I probably won’t give you money to buy a house when you’re older” but I know you’ll always get your needs met. Every argument you have with your dad and I about: what shirt to wear, what new thing you want from Amazon, why you don’t get the exact same as your brother….all of that fiery power squashed, would also mean you wouldn’t: fight for Judah, make an amazing life for yourself, break generational trauma of people pleasing, know your worth, and live without conditioning.
Well my little firecracker, I would never do that to you. Because I know too well what happens when you are not seen. You lose yourself. You conform and question your very existence; the one thing that is specifically yours. I may not always be able to hold my tongue when you flex your you-ness, but I will always hold your hand as you walk through this life exactly as you were designed to be.
Happy 7th birthday my baby. I love your bigness so damn much (2 strikes.)
There were all the years before this one when you looked like your dad and had his quiet mannerisms. , You were also a sensitive soul like me and loved animals so much it hurt. So we reveled in the parts of you that looked like us and we tried like hell to project all that we needed as kids onto you.
Continue readingCandy canes taste a little bit sweeter when you spend the holidays with someone who has Down syndrome.
Sure, Judah may run away as we get the tree, take all the ornaments off when it is decorated and refuse to sit with Santa, BUT his mild inconveniences pale in comparison to his glorious gifts. Here are five ways our little boy makes the holiday season even more magical for us.
1. I recently wrote about a wedding that Judah was in. He stood by, as his best girl married the man of her dreams. When he was long relieved of his duties and his dad and I were able to let loose, we spoke with the groom’s father for awhile. He told us he had a brother with Down syndrome. He spoke of how they would have him over and take him places. And the way him and his wife lit up when they spoke about him was contagious. Their fondest memory being that he believed in Santa for his whole life. I couldn’t help but hope that Judah always feels the same and I was giddy with anticipation. As a nostalgic, the way magic fades as we age, is sad to me. This sliver of a dream is a silver lining to that.
2. Like all kids, Judah loves a present. He’s enamored by the act of opening and the big reveal. The only difference is, he could care less what it is. Judah squeals with as much delight for socks as he does for his beloved ketchup. He doesn’t play with toys much and he can’t articulate his desires. That sometimes makes things tricky and Santa has to get creative. But on the bright side, he’ll swoon over Pom poms from the dollar store or a spatula from the kitchen section. No matter what the gift though , Judah doesn’t feel the disappointment I felt the year I received a knock off cabbage patch kid during their height of popularity. He feels gratitude, ownership and pride that he has something of his own.
3. Delayed cognition is not always our friend. Judah still thinks he can jump on me like he is a toddler and we are still working xon our letters. But when it comes to the holidays, we count it as a win. It’s currently December 8th and we’re just wrapping up the Halloween holiday. He is still saying “boo” and watching Mickey’s Two Witches . He’s seen Santa twice and one viewing of the Polar Express. So, he’s beginning to wrap his little head around the season. But chances are, when others are deep in the January blues, Judah will still be jolly as he hollers “ho, ho, ho” on repeat.
4. When Judah was just 18 days old, we spent 2 weeks in the hospital with RSV, including Christmas. Our children with special needs come with all those needs that are indeed special. So, we are grateful for simple things like: no hospital visits, teachers we can trust, a new word, zippering a coat, a day without meltdowns. Gratitude takes center stage for everyone this time of year. It is certainly no exception for families who make a life out of loving the little wins.
5. It is true that people with disabilities are the most common minority ,yet, they are the most undervalued and underserved. However, despite that disturbing fact, I have been witness to angels everywhere on earth trying to right this wrong. I see it on social media in the celebration of a man with Down syndrome completing an Iron man or being part of a college football team. I see it through foundations who support the needs of caregivers. I see it through small acts of kindness for my own son and accommodations at places like Disney world. I see it through fashion shows that raise money for research and retreats that bring together mothers. I see it in special nights at the zoo, water parks, and museums; made for those who struggle with sensory overload. I see it through our own friends and family who support every inch stone my child makes. I see it in sports foundations that give my child a chance to hit a baseball and score a touchdown. And I see it from my dear friends at GiGi’s Playhouse who offer free programming to people with Down syndrome and bring families with common needs together. I am blown away by how hard these people work to make sure my son has a special experience with Santa or how World Down syndrome day feels like a second Christmas. We may feel the lack of empathy from the world on occasion, but mostly we feel extremely loved. It makes you want to pay it forward. It’s changed me. Seeing all the gooey goodness that comes our way, makes me want to do better. I am honored to be considered a part of the community that looks out for our most vulnerable . I am also committed to helping to make sure their magic continues to touch families like ours. Spreading the word, donating time, and making contributions is such a small way to celebrate the holidays with the people who remind us daily of our son’s worth. If the magic of the season is to celebrate love and life, then we are absolutely overflowing with enchantment.
I went to a caregiver summit recently and heard a brilliant doctor speak. I was moved by the way he described raising his son; saying it was like being a parent of a bunch of different kids. His son was different at 2 then he was at 8. And being 8 was not the same as 18.
I thought of you. You still wear diapers like you did when you were 2. You are still the nonverbal child you were at 4. But what I’ve failed to realize is, that is where the similarities end. You may still enjoy Sesame Street, but shit, so do I. You may make messes while eating ice cream cones, and throw things when you’re mad, but locked inside that delicious mind ,is a freshly new 8 year old kid longing for some autonomy.
This blog isn’t as much for you as it is about you. You see, I decided long ago that you changed everything because you changed me. If I’m being honest, I was a pretty selfish brat before I had no choice not to be. And because you “fixed” that I declared you a prize. Because your birth was synonymous with divinity and because you survived an illness that could have destroyed you? I thought I knew you. I thought you had an obligation to be lovely when frankly, you’ve always been kind of sweet and sour. In fact, your dad and I have called you General Tso for years.
My point is this. You might be sad that your younger brother has surpassed you in milestones or angry I that I held you back in 2nd grade. You might be annoyed that I kiss you so damn much or that I make you hold my hand in the road. Maybe you’re tired of wearing what I pick out or having someone have to wipe you. I can’t imagine any of it. What it must be like to be you. What it must feel like deep in your soul. What you want to do must be so misaligned with what you can do and that frustration must be unbearable at times.
Between me and you, I can still be the selfish brat who wants to have a quiet meal, cute picture or relaxing weekend. Your drop and flops, your hurling items at my head with expert precision, your refusal to put on shoes; they all hinder that. They are not in line with the story I tell myself (and anyone who will listen) about how God gave you to me; how you were a gift to this world.
What I am realizing is You are a gift. That is true. But only because you keep teaching me to do better. Like how we are allowed to have big feelings. That they aren’t always polite. That they sure as shit might inconvenience me. That you are most certainly a different kid now then you were at 2. That you are a person. That nothing is wrong with you just because you are pissed off. That you probably have very valid reasons for that anger. That I have no idea what’s it’s like to walk in your shoes. That I need to maybe stop analyzing you and trying to fix you. That you just want to be seen and heard. That you are just like every single one of us.
Thank you for never giving up on me and for being exactly who you are; sweet, sour and everything in between . Happy 8th birthday Bubby. I look forward to getting to know the kid you’ll be at 8 because I bet he’s pretty cool ….and you deserve to truly be known. I love you so much sweetheart. Thank you for being born.
Augie, I’ve fallen more in love with you over this past year than I knew was humanly possible!
When you were born, I was in the weeds. I had a 4 year old, a 2 year old with special needs, a new job and a whole new life. I didn’t even know who I was anymore, and I knew I couldn’t give you everything you needed from me. It made me sad. I felt like I was failing you.
And then at the ripe age of 3, your world was turned upside down by a global pandemic that no one in the world knew how to handle….not even your mommy. Who knows what kind of damage that will do to you kids? I shudder as I think about it BUT I also thank the Lord everyday that we were able to keep you safe from it. I remember your first time back at Wegmans was last year around this time. You were flabbergasted that the store had all the same food you had at your house and inwardly, I really started to wonder if you would be okay.
But since we’ve been back in action, you have flourished. You, my sweets, were born for the world. First off, you want to know everything about it. You want to know what every word means, why things happen the way they do. I watch your wide eyes take things in, I see you processing, and I know the questions are coming. It’s delightful to see this planet through your eyes. You make everyone laugh with your grown up vocabulary and sometimes cringe ability to tell things exactly how they are. It’s refreshing to see you witness life so unabashedly.
And because you finally have: opportunity, love and admiration; your needs are being met. With that, there comes a calmness about you that you haven’t had ever. Yes, you will still cry on repeat when you want a snack or don’t want to go to school. But your persistence is much more admirable than annoying. I know it will serve you well when you’re the grown up you already think you are.
You have arrived Augie. All those times you sat waiting in the wings to be fawned over. The time you spent confined to the house as the “baby of the family” (a term you despise by the way,) because there was a deadly virus on the loose. All those set backs did were to make you that much more ready to fly. Daddy and I proudly watch you swoop and swirl and we marvel how it all comes to you with such ease. The only worry I have about you is that you’ll leave the nest for the big waiting world, only to never return.
So maybe I let you sleep in my bed a bit longer than I should? Maybe I hold on tightly to every “mommy” that you utter. Maybe it’s you who gets the limelight for a minute. Because you are finally living the life that was meant for you.
I will not tell you to “never stop being you” because I know you never will. Instead I will tell you this: watching you unfold your wings is a privileged gift that you have given to us. I promise to always value your uniqueness with the same thrill that you approach the world. You will set the place on fire someday, in the best way possible. There is no doubt in my mind little one.
Happy 6th birthday August James . I love you beyond!!
I remember going to the emergency room once. I was about 9 and slammed my finger in a storm door. All I remember is that we got home at 2 am and I had never been up that late before, so that was cool. I also remember a guy with barbed wire sticking out of his arm which was terrifying in that “can’t look away” kind of cool. Other than that, I’ve only been to the ER with Judah. Fun fact, when you go for a child, they swoop you away into a different room. A friendly room with colors and games… to keep the kids from being too sacred I imagine? Boy do I wish I was in that room…
Thursday night I was violently ill with a stomach ache. This is not the first time, nor the 5th. I’ve also lost a great deal of weight and just generally don’t feel awesome. So, the story goes…..Friday morning I called my doctors, both of them basically blew me off . In a quest for answers I headed to Upstate’s emergency room where my entire being was rocked. Here are the things that I learned from my 6 hours waiting and 10 hours there….
1. Being by yourself for 6 hours in a room full of sick people will test all your limits and emotions. I was: scared , sad ,impatient, mad, overwhelmed, grateful, wanting my mommy, and then all of those feelings all over again.
2. No one really cares if you’re crying which was baffling to me. But they can’t. The people who work in emergency have no option but to disassociate. There is so much trauma in that room. There were no people with barbed wire sticking out of their arm. In fact, I saw no blood at all. These people had internal wounds and it broke my heart. There is no way to sustain seeing that kind of pain unless your coping skills are to try and ignore it.
3. We have serious problems in Syracuse. I learned in the hospital that homeless people come and sign in just to get a warm blanket and sleep somewhere for five hours. They can even get fed with a free lunch box given to waiting patients. Then they leave without ever even being seen. I waited with about ten of these homeless people and most of them were also on serious drugs. I saw eyes rolling , shaking, screaming, and suffering. And if I’m being honest, it made me a little angry because it is why I had to wait so long. But it also made me scared and incredibly sad. My empathetic heart was destroyed at the hopelessness of this problem. We must somehow find a way to do better; for the homeless and addicted, for the other patients waiting and for the staff who are verbally abused everyday.
4. When doctors don’t believe you, take matters into your own hands and advocate! There is no worse feeling then when someone does not believe your pain. Both doctors I called on Friday deemed me fine and I knew I wasn’t . When I was finally seen in the ER six hours later, everyone was lovely. They gave me every blood test and scan they could to eliminate anything serious. They listened and looked me in the eye. They took such good care of me I cried. They validated my pain and tried to solve my enigma. I ended up with confirmation that I am not dying and a referral to an allergist and rheumatologist. Being seen and being heard is all humans want. Honoring that in each other would fix so many things; including my afore mentioned musings.
5. Someone always has it easier than you and harder than you. Your problems certainly are not yours alone. But that doesn’t mean they don’t have worth. It’s very easy to put yourself aside and say I will keep going. I am fine. But what would you tell your best friend if they were sick? Think about that and then, tell that to yourself. I am lucky that I have amazing best friends and a supportive husband who all told me to put myself first. I listened and found relief. Because even if it’s a paper cut that has reduced you to tears, if you are suffering it is never okay. Your feelings are real. Often we don’t love ourselves enough to believe we are worth freedom from our pain. That’s because we are taught from a young age to have manners, suffer in silence, don’t be a burden. We are taught to abandon ourselves and not be too much. We are taught this so well that we are petrified to put others out and instead would rather put our own life last.
6. Stress can manifest. The doctor told me this. He said “people say the effects of stress is all in your head and they are right.” The physiological way that stress manifests in your body is real. That is to say that there is a real correlation between the stress on your mind and the activity in your body. AKA, my life is giving me a stomach ache. Stress always seemed like such a grown up word to me. It was something that belonged to my parents generation and something I didn’t have to worry about. Even though, logically I know stress causes high blood pressure, heart problems , anxiety and more, I never thought of it’s impact as a me problem. This was more of a Wall Street/ CEO / suffering private detective swallowing Tums like candy /kind of issue. In reality, stress is destroying the quality of my life. When I asked the doctor how to fix it he mentioned: life changes, change in diet, medication and therapy. It looks like at 48, I still have a lot of work to do.
7. Every experience in our lives is a teacher. Sitting in a waiting room for 6 hours was excruciating, especially because I felt awful. Going to hospital by myself was scary and lonely. All of it was no fun. But fun doesn’t give us lessons. It doesn’t give us perspective. So, although we should not wish for strife, the next time you find yourself sitting in it, take solace in knowing that it is there to give you a life lesson on being human. Look for lessons always. Be a seeker. And notice that when you’re feeling sad, impatient, angry, etc. Life is trying to show you a way back to yourself. I am thankful for the lessons the ER taught me and even more grateful to be home!
Finding The Joy 