Monthly Archives: November 2016

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…..

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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.

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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.

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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.

 

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I know you aren’t blood. We didn’t grow up with the same mom and dad. We didn’t share clothes or childhood secrets…but we do share my brother and for that I am forever thankful.

When the two of you started dating, I didn’t know I needed another friend, but I made a best one. Thank you for letting me be your much older, third wheel and for keeping me in a constant fit of giggles. As our number of road-trips and repertoire of inside jokes grew,  so did our love for each other. I admired you deeply.  It was almost like you were the older one, as I tried to follow in your constant, considerate footsteps. You,  who never misses a birthday or a beat. You perfectly planned my bachelorette party. You tenderly delivered your maid of honor speech and  you never wavered in your commitment to our friendship. It isn’t just me by the way,  I notice how you greet everyone you know with heart. You, my younger, darling sister-in-law, somehow have managed to weave maturity into simultaneous silliness. I  have always been so enamored by your grace and I’ve never taken for granted our fun. And just like that, one crazy night in Massachusetts,  with a waiter who was Susan Sarandon’s brother, we nicknamed ourselves Thelma and Louise.

As we grew, good times morphed. I went from third wheel, to getting married and eventually we had children. Our wild nights shape shifted to family events and  our laughter always remained.

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…until it didn’t. The laughter stopped. I answered your phone call just hours after Judah was born. You being you, stole  a second away from your demanding job to see how I was doing. ….and I told you “we think he has Down syndrome.” From that moment on, you did everything right.  Thank you for that.

Thank you for not holding it all together when I said “we think he has Down syndrome.” Thank you for just the right amount of tears.  Thank you for never saying “I’m sorry.” Thank you for acceptance without one million questions.  Thank you for not saying “it will all be fine” because you knew me and you knew I wasn’t.  Thank you for sharing those difficult moments with me, quietly, elegantly, and in solidarity with me. Your expert amount of sadness saved me you know? If you, my hero, could share in it, then perhaps my sorrow was justified.  I was allowed to be it and you held no judgement.

As we rolled home from the hospital, you continued to save me on a daily basis. Thank you for all the check-ins.  Thank you for calling Judah beautiful and for capturing the beauty you helped me see with your phone. Thank you for taking off work to help me wrap Christmas presents when the spirit would have otherwise escaped me.  Thank you for blow drying my hair for me when the pain was a thousand jellyfish stings. Thank you for the satchel full of little hair ties which actually led me to write this post. The other day I saw this brilliant little pouch tucked deeply in the back of my bathroom drawer. It was filled with my nieces  little pony holders and when I opened it, I opened the floodgates. Emotions and memories  became as fresh as cut daisies. Keeping my unkempt hair out of my eyes was such a small gesture but it kept me all together just the same. You were full of small gestures that kept me all together then: The way you raced to the rescue when Judah was sick and took Calvin as if he was your own son. The way you took him to urgent care because he didn’t seem right to you and how you gave him his nebulizer treatments when he was diagnosed with pneumonia. The way you put the mask on his beloved stuffed Rudolph to ease his apprehension and even the way you took initiative and cut his hair when it was getting in his goopy eyes. Then the way you took him to get his hair professionally fixed after you gave him the “Julie Andrews.” The way you came to see Judah in the hospital and again shed the appropriate amount of tears.  The ones I needed to see. The ones that told me this is hard and that I was allowed to have a moment. The ones that accompanied your hug as you  uttered “I can’t imagine.” Thank you for being my shoulder even when you couldn’t imagine Down syndrome and RSV and pain that was swirling around me.

Thank you for being there with me when I returned from the hospital to find out my dog was dying; A dog that you came to meet the second I brought him home 8 years earlier. Thank you for going right along with the crazy as I spent hundreds of dollars on herbs and supplements an thank you for helping me concoct the disgusting, smelling serum I thought just might just save my puppy.

Thank you for rescuing me over and over again. I don’t know that I ever really let you know just how much it mattered. And now two years later we are back.  We are all laughs and jokes and girlie giggles again…but we are so much more.  I will never forget what you did for me. We are in it for the long haul. We are here for inside jokes and we are here in times of anguish. We are friends, we are family, and we are sisters.  I love you!!!

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I’ve been doing a lot of comparing lately….not in destructive sort of way but in a way I imagine moms with three little ones do. Which birth was easiest, who was the fussiest, which little darling had the longest toes. 

Reality sliced a nerve as I realized that today Augie is 19 days old. The same age that Judah was when we were admitted to the hospital for 13 debilitating days. December 18th,  2014 is a day so ingrained and a part of me that I can smell the same crisp air as I rushed Judah to the doctor… leaving my helm at red lights to climb in back and make sure he was still breathing.  I can touch the trauma, I still shiver at the uncertainty and feel the crippling guilt of how Down syndrome still enormously overshadowed his illness.

Augie is 2 pounds bigger than Judah was when he got sick but he seems smaller and newer somehow. We had been through so much with Judah by this time. Each day was a year as we continued to grip our new normal. We were  told by his pediatrician “he had that thing we thought he had” Four ladies had just been in my house evaluating his every coo and move. There were some close to us who were unsure how to handle the diagnosis. Some overcompensating , some wanting to be the ones to tell the world, some acting like nothing was going on; most at a loss for how to help. We had a revolving door of visitors by this time; people trying to keep me grounded. Christmas was so close you could smell the pine and sugar cookies. And through it all we were still attempting not to disrupt the world of our little 2 year old. All of this swirled around the short days of falling in love with Judah and so today the comparison shakes me a little.

I think I will always cradle the post-traumatic-stress that surroundsJudah at 19 days old. I will always hold tight to the hospital and breathing tubes and RSV and dreams of Christmas shattered. I almost want to keep them close. I think it’s important. Adversity breeds strength and it breeds appreciation. 


As I sit here cradling my 19 day old, I wonder  how the hell I was strong enough to copilot another 19day old baby  in an ambulance and watch him fight for his life. I wonder and  I cry about it. Perhaps it is unhealthy to  relive Judah’s past and compare  what I have with Augie to what I went through back then?? Or perhaps, our pain should remain in some diluted form  to serve as a reminder of how we survived it, how we handled ourselves with grace and how human beings are incredibly capable of moving past what we thought might destroy us.