Little Bird

My little bird. Today is the day. Your egg was very different than the others I had seen. But you were mine, and I treasured you. You hatched with different feathers in places where others had none, and you were bare in places where others had many, but you were beautiful. And every feather the other hatchlings had so quickly after emerging, you eventually grew as well, and continue to grow. Other birds sing all day, but your song is short and always sweet. Oh how I love to hear you chirp. Other fledglings pitch and soar above our perch. We watch and we wait, wondering if we will see your wings outstretched. You keep your wings folded. We wonder if they stretch. If they move.  We treasure every little hop and bounce you make while growing your wings. You just need time. We want to see you scatter and sail with the others, but make no mistake, we love the safety and warmth our nest provides …because you are in it.

Lately, something has happened. The change of seasons seems to have brought something with it. You began to chirp louder, jump and bounce higher, and peer over the nest to the ground below. You looked back at us expectantly and with curiosity…as if you wanted to fly. 

So I looked and looked and looked for a safe place for you to fly and fall and fly again. Most of the flocks wouldn’t let you join their flight. “We’ve never flown with his kind!” they said. “He flies different than us, it might be more work for us!” they said. So I drew you back into the nest… I was hurt, scared, and afraid. But you didn’t stop hopping over to the edge and looking over the expanse. You would cautiously twitch your newly fledged wings, perched at the edge, waiting for me to give you a push. But I couldn’t. I couldn’t. I couldn’t. And then I could.

I spent the night before gathering and storing your worms, twigs, and bits of twine. Anything I thought you might need in your journey. I fussed and fidgeted over you. Grooming and assuring every feather was in place. You were patient, but it was obvious, I was holding you back. You needed room to grow. More and more, you stirred the air around us with your wings, stretching and strutting and showing us you were ready. So that morning, it was time. The sun rose and filtered light out as far as the eye could see. You and I rose to our feet and peeked our heads up and over the nest. What a world we both saw in front of us. At once terrifying and beautiful. Full of danger but also promise.  We both filled our lungs and stepped gingerly to the edge. I reminded you that to fall is to be expected. I reminded myself of the same thing. You looked to the ground below and the open sky above, and a twinkle grew in your eye. You scanned around and shook out your tiny feathers. You opened your wings and closed your eyes. I held my breath.  Once, twice, three times you flapped your wings…and out you stepped. Out of the safety of our nest and into open world. You dropped so close to the ground I thought all was lost, but at the last second, you spread your wings and rose up into the sky. As I squinted into the sun, you flew circles above the treeline, not so much with the others, but around them, near them, in your own pattern. You soared above me. Stretching your wings to the limit, for the very first time. Finally having found the room, the space to do so. I felt my heart squeeze as I realized the feathers under your wings, the wings you spread today for the first time, were made of colors I had never knew existed. I never would have noticed, had I not let you try, had you not convinced me to let you try. Today, my sweet son, you left our nest. I’ll swoop in when you fall but oh how I love to watch you fly. Please don’t fly too far or too fast.

What to Expect When You Got More Than Expected!

So you have a kid with Down Syndrome ( or any other additional extraordinary needs)...now what?

1. It's okay to be shocked and sad. 

It is NORMAL to grieve the loss of the child you thought you would have.  I explain it to others that it was as if I had expected for 9 months and given birth to twins and one did not survive after delivery. I love beyond measure,cherish, and would give my life for the baby I have, but will also grieve the loss of the other baby I imagined, planned, and dreamt of for 9 months. The grief over my lost child does NOT take away or change any of the love and devotion for the child I have. 

Henry's "extra" thought:

My parents often are baffled how noone saw the diagnosis coming. I mean, Mom had a high risk OB, high level ultrasounds, and ultrasound appts. once a week. Nothing, nada, nilch. Totally unexpected. I remind Mom that I kept my extra chromosome a secret for a reason. She needed those 9 months of relative worry free bliss to grow me as happy and healthy as I am today. Mom says those were the happiest 9 months of her life. I... I did that. 

2. Parenting a child with special needs feels like what one might imagine it feels like to be emotionally unhinged.  Moments of extreme optimism that feels like delusional happiness followed by extreme fear and worry that makes it difficult to function. Like no shower for three days, obsessive WebMd researching, inability to function. But the crazies are soooo worth dealing with, because the highs are indescribable. And in those low times, you just have to hang on to your board and wait for the next wave up and out of there...because it WILL come. 

Henry's "extra" thought: The highs I like...its all clapping and "yays!" and cheddar puffs aflowing. But the dreaded lows? No advice on that one. It's really annoying. Dad and I roll our eyes at each other over Mom's hand wringing while he and I watch cartoons. 

3. When your child hits a milestone, the joy and hope you feel is indescribable. It's just the shot in the arm you need as a parent to live to fight another day. Just when you think your child can't or won't do something...they do.

Henry's "extra" thought: Throw out the milestone charts...they are the standardized testing of child-rearing. They aren't for us and they dont help us. I'm not doing anything unless it's on my time and my terms. The sooner these fools realize this, the easier my life and their's will be. My parents still haven't figured out that this isn't a democracy. In this house, Henry is King and the Henry way is the only way. Our motto around the house is "Henry don't do what he don't wanna do." Also, just because I've learned a new skill, does not mean I am your trained monkey. I don't work on command. I won't wave, turn to my name, or sign 'more' until I am confident that you are on the verge of a complete nervous breakdown thinking I'm regressing, and then BAM! I rope you right back in with a furious display of my skills. I like to break you down Mom, then build you back up. It's kind of my thing. When I make you work for it, you seem to enjoy it more. 

4. Be informed...sort of.

Odds are when your little bundle of extra comes along, well meaning medical staff will give you lots of literature. Mostly pros and cons in terms of health complications and necessities specific to your child's diagnosis. If you are the worrying kind, just do a light skimming of the material and make sure you choose a qualified pediatrician willing to do the worrying for you. Proceed with caution on being overly educated on "common complications."  Do not spend your free time reading up on all the things that can go wrong. Yes, as the parent, you are the watchdog, protector, and first line of defense in your child's health. But there is a balance between being informed on what your child maybe predisposed to, most likely to contract, or frequent medical complications that can arise and sitting back and being present while you enjoy your beautiful baby. I have not found that balance myself, but my therapist keeps trying to convince me that somewhere it exists. Life is too short to worry it away. What will be will be, no matter how hard we try and prevent certain things or protect our children. I believe that within the acceptance of that truth, lies the path to happiness as a parent. 

Henry's "extra": This is where my Mom really lets her crazy show. I had a rash, she thought it was the measles. A bad bout of crying? I must have meningitis. Early in in my career, Mom was convinced I had some sort of seizure disorder. Turns out I was just learning how to hold my head up. The woman inspects every...single...dirty...diaper. She's even requested that both of my Grandmothers send her pictures of dirty diapers she isn't there to inspect in person. And they do it!!! (Granted, I did bleed profusely from my rectum once that required a short hospitalization, so I cut her a little slack on this one. TMI?) Just today in fact, I spent 2 hours in the E. R. for a rash that Mom was CERTAIN was a sign of a Leukemia. Did she call my pediatrician? Nope. Did she wait and see if it went away over the weekend? Nope. She had us packed up and admitted before I could even say "More Cheerios please?" Now in her defense, my friends and I are at an increased risk for Leukemia and petechia IS a red flag. Soooo, after some bloodwork, confirmation from hospital staff that what Mom was seeing was in fact petechia, a relaxing viewing of Toy Story in Spanish, and getting hugs and snuggles from sweet nurses and amazing doctors, I was sent home with a clean bill of health. After my mother's embarrassing display of relief and apologies for being "that Mom",  the doctors and nurses reassured my Mom that bringing me in was the right thing to do and that they couldn't explain the rash, but it appeared harmless. As we left, Mom was given just the push back into paranoia that she was accustomed to.       

"If he bruises anywhere on his body, bring him back!", they yelled as we walked towards freedom.  Thanks a ton traitors! Looks like I'm not doing anything remotely dangerous or fun in the near future. What little boy worth his salt, doesn't get bruises? I'll just go play with Dad...he lets me do all sorts of dangerous maneuvers. Dare I say, even encourages them? Until tomorrow...

5. Guilt trips and the lies your conscience tells you...

Guess what? There are going to be days that you don't like your kid. You love 'em, but definitely not liking 'em. They scream all day, push food onto the floor, bite you, and give dirty looks. Your first instinct after getting frustrated, is asking yourself "what kind of parent am I for not being more patient with my child with special needs? For not having more emotional stamina? The answer is: A normal one. You're a normal parent! Your extraordinary set of circumstances doesn't change the fact that parenting is exhausting and frustrating. Your child will get on your very last nerve...and that's okay! You both know you love each other, and odds are your kid gets sick of you as well. Why not enjoy feeling like the majority of other parents for a change?

Henry's "extra"

You know who never thinks I'm annoying?...My Grandmas. Go ahead, call one of them. Give them your classic "I need a break" speech. They'll let me scream, spit food in their faces, pull their hair, and throw things from my highchair as many times as I want. (they'll even pick said things up, without complaint) Good luck getting them on your side Mom. 

6. Good cop Bad cop

 Depending on your setup, you may find yourself in a similar situation to my own. I'm the bad cop...the slave driver...the pusher. I have a motto at our house for Henry and I and that is "wake time is work time". This is a sentiment that is NOT shared by anyone else in my house, or really anyone else  in Henry's Universe. (Outside of paid professionals and therapists.) I ride this child like a show pony and sometimes I ride us both into the ground. Because of those times, I want to advise you to do differently. You must push, but you must also play. Maintain a routine but encourage spontaneity. Practice is progress and progress is key...but this baby of yours will never be this young again. Today is a gift. So follow the lead set by the "Good Cop" in our house, or Dad as we more commonly call him. Throw on some sweatpants, turn on Baby Einstein, and snuggle till you pass out. 

Henry's "extra": Don't forget the chocolate milk with extra syrup. 

7. The Big Zzzzz

Regardless of your child's genetic make up, everyone has challenges when it comes to their child sleeping. If they say they don't, they are either lying or they don't remember. Now, some may have had only had minor bumps in the road, and others, like myself, have had Mt. Everest standing in their path. We have tried co-sleeping, early to bed, and late to bed. We've attempted The No Cry sleep method and the Mild Cry it Out Method. (We have chosen not to partake in the old fashioned Cry it Out Method. Mainly for my sanity and because of other unproven opinions. ) I have laid in my bed and wondered "is he not getting it because of his extra chromosome? Does he even understand what we are trying to get him to do?" Sadly, I have no way of knowing. Granted, kids with a little extra can have several issues that can disrupt sleep, and therefore should be screened to rule those issues out. Fortunately so far, Henry's sleep issues seem to only be related to stubbornness. My gut tells me he knows what to do, but that he is choosing not to. In fact, Henry put himself to sleep 3 nights in a row last week, and then stopped. Cold Turkey. I have no explanation and no theory as to why. All I know us that I felt a taste of glorious freedom for those three nights that I was no longer required. In fact, a part of me panicked, thinking I wasn't needed. But before I had a chance to open that bottle of red and try to clear out some DVR space, the honeymoon of Henry's bedtime independence was over. Just like that, sleep training progress ground to a halt and we were and are still back at square one. Henry demands to be rocked. Every.Time. He. Sleeps. My nighttime freedom is just a distant memory. So special Moms, on the positive, this may be another time where you can enjoy being just like other typical Moms. Because regardless of our child's individuality, so many of us still have no idea when the hell our child will ever self soothe or sleep through the night and we fantasize about an 8 o clock bedtime, or our child sleeping 12 straight hours. We stand together in paranoia and panic, watching the sun set and the skies darken each night. In unison, we ponder and pray," Will this finally be the night we've trained for?" For your sake and for mine, I hope it is. 

Henry's "extra": All I know is that someone is definitely being sleep trained right now, and that person is definitely not me. 

8. CELEBRATE

Henry's "extra" thought: I mean REALLY celebrate...don't be ashamed to be truly joyful...anywhere, anytime. 

9. EVERY

Henry's "extra" thought : Every thing, Big or small. Especially the small things. Put enough smalls together and you've got something big!!!

10. VICTORY 

Henry's "extra" thought: My victory may not look like yours, but it's mine and it matters. 

11. No entry ( spent the evening in the E. R. No time to write:() Sorry friends. 

12. Don't settle when it comes to support. 

The hardest thing I'm dealing with right now is finding a group of Moms like me. Don't get me wrong, I have several solid connections, but I need more. I started this journey reaching out to anyone on social media or local support groups I came across whose child had an extra chromosome. I was desperate to find someone like me. Desperate not to be alone.  Big mistake. Take your time meeting other families and deciding if you are compatible. These are relationships that ideally should last a lifetime and help you get through the peaks and valleys in the DS world. Be picky.  Don't be afraid to speak your mind and stick to your beliefs, even if its unpopular. You already have so much on your plate as a parent, that expending emotional energy on someones views or comments that upset you, just  isn't a healthy use of your reserves.  The special needs community is surprisingly polarized. There are very critical, judgmental, and down right nutty people out there whose only commonality with you will be Down Syndrome.  You have to navigate a world of political, social, and religious individualities. Some will play nice, and some won't. The pro-life pro-choice debate as well as the ever growing field of genetic therapy research are positively explosive topics in the DS community, for obvious reasons. Conversations about these topics become quite heated.  You will see therapy choices questioned and judgements made by others, of how someone chooses to accept and live with their child's diagnosis. There will be times where people are just down right judgmental. Sometimes,you will be too. The important thing to remember is that it's okay to be you. To think the way you do and to believe in what you do. The only rule is that it has to come from a place of kindness and respect for others. On your end and on theirs. Because at the end if the day, aren't these qualities and confidences the  very things we want to teach our extraordinary children?

Henry's "extra": I can smell crazy a mile away. (I did not inherit  that from my Mom. ) On behalf of her, if you happen to have a child with something extra, are socially liberal, reasonably pro-choice, think that Obamacare is actually a good idea, and think Duck Dynasty is just so-so, let me know. My Mom's been waiting to meet you. If you're none of those things, but are okay if she is, and will treat her kindly and respectfully, in spite of your differences, as she will you, let me know. She's been waiting to meet you too. 

13. Can't...think...must sleep

14. Prepare yourself for one of many amazing phenomenons that come with your child's extra chromosome: technicolor love glasses. Let me explain. Sure, you love your family and friends. But watching your family and friends interact with your child? Its like your love for them goes from black and white to technicolor. Henry has made my love for my family and my friends grow stronger and deeper than I ever thought possible. We call him the great filter. He brings out the good and the pure. I had no idea what joy it would bring to watch my son interact with those around him. It is a gift. 

Henry's "extra": It's a simple explanation really. I just make people want to be better versions of themselves. That, and I'm cute. 

15-17. Sometimes you get sad and scared all over again. Just when you thought you were okay, you're not. And that stinks. 

Henry's "extra": I love you and you love me. Today, that's enough. That's always enough. 

18. Some days, you just don't see it. 

19. You will realize the complex and confusing emotional phenomenon of what I have heard referred to as "joyful sadness" and "sad joyfulness." Meditate on what you think those terms mean. It's pretty powerful once you realize you can be devastated and uplifted in the same moment. 

20.Get a good therapist. Yes, I understand you have a spouse or family or friend who listens to you. That's not enough. You need a trained professional who can coach you through the stages of grief in the beginning and can help you focus and cope with the challenges you will greet daily. You will have peaks and valleys, and cycles of various unpleasant or overwhelming emotions. By seeing someone regularly who can help you put one foot in front of the other at times, you will be doing your family and yourself a great service by keeping your mind and heart emotionally healthy. 

Henry's "extra": You do whatever you need to do to get your head right, Mom. Dad and I have a saying, " If Mama ain't happy, ain't nobody happy." This theory is no joke. 

21. Apples and Oranges.

My night started innocently enough. We were attending a play at my nephew's elementary school. As I watched the kids file in and climb up on to the bleachers, it struck me. Like a blow to the face...We are never doing this. 

I will never be the parent waving eagerly at the child searching for me from the stage. I will never hold the poorly designed paper programs or order an overpriced DVD of his performance. As I sat stunned, and felt the familiar burn rise up in my throat and sting in my eyes, I was so angry at myself for not realizing and preparing for how coming to an seemingly innocuous 3rd grade play  might affect me. How could I be so dumb? I let my guard down, and now I was having all of these feelings whose triggers I try to avoid. 

I looked on stage and not a single child looked like mine. Hell, there wasn't even a wheelchair, crutch, or more than 3 kids out of 100 wearing glasses! My stomach turned as I tried to put these feelings out of my head, and to focus on my nephew who I adore "Quit being so selfish!" I thought. "Stop feeling sorry for yourself!" I commanded. But no luck. I couldn't fight the overwhelming awareness and acceptance that we are on the outside. That despite the fact that I know better, it felt like we didn't belong. 

"What if someone reads what you've just written and leaves feeling worse?"  My answer is this. The journey of the extraordinary child and the extraordinary parent is complex.  My goal when I write, is to be honest by sharing the light AND the dark. To make sure noone feels ALONE. There's nothing worse than hurting, and feeling like noone else can relate. That's where I was tonight.  Alone and hurting, in the darkness, in the back of that auditorium, of the very same school I attended decades ago. I didn't like it. Not one bit. All I told myself is that we can't know our child's future. We just know we want it to be a joyful, diverse, and inclusive one. We must also NEVER underestimate what our children are and will be capable of. 

So here is what I hope you'll take from  my experience earlier this evening. I want to remind you, my extraordinary peers, that it is not just a cliché when I say you are not alone. In those moments where you are in an auditorium full of apples, and you look down and realize you're an orange, I'm there. You and I, complete strangers, and our children, and our families, can be oranges...together.  

Henry's "extra" thought: Mother, you don't know what my future holds. My world is isn't burdened by the restraints of my typical peers. I may not do what others are able, but neither can they do what I can. Have faith in me. You can't even dream of the things I will do in this life. I happen to love being an orange. 

Missed a few days. Oops. 

28. The Village

When one rejoices, we all rejoice. When of our own faces sadness or shock, we all do. Then we face fear. 

I heard news today that a family in our support network received a Leukemia diagnosis. This is THE fear that all extra chromosome families have. Some deal with it better than others. It may come as no surprise, but I'm not one of those who deals well. It's all so much that sometimes I have to look away. 

Another family is struggling with a seizure disorder while another family id fighting through a heart defect situation that has turned gravely serious. What do you do with the knowledge that our kids have a higher chance of dealing with serious medical concerns? 

I don't know the answer. I don't have advice. There are some days I don't know how to put one foot in front of the other when faced with the statistics. 

All I know to do is to hold Henry tighter, love Henry harder, and pray.  Peace....that's what I pray for each night.  Peace that all will be well. Peace in the knowledge that I  am strong, and Henry is stronger. Peace in the knowledge that each day is a gift to be treasured and to be fully and unabashedly lived. 

The Beginning

Its taken 366 days to write this story and its still not enough time. Everything feels so fresh and so raw, even after this time has passed.  Everyone who has walked this journey has said that the first year is the hardest. I can see how things have gotten easier, but some things just seem to catch in my throat as fresh as it was on that first day. I have been told that to heal, I have to relive. This is our birth story.

The morning of Henry’s birth was surreal. Carl played the soundtrack to Batman Begins saying that our hero was on his way. I changed it to the Despicable Me soundtrack….nobody wants that kind of pressure. We arrived on a Sunday morning. Hot, humid, and the hospital was quiet, almost a ghost town . I stood on the curb waiting for Carl to park and my sister in law drove past me to the parking lot. We waved to each other so excited, so charged,so very naïve.

I spent quite awhile getting prepped, chatting with family. My parents spent the whole time with us, and we were visited by family and friends who had arrived for the birth of our  miracle. I look back at those hours and think how peaceful we all were. I look at pictures and realize that was Life A and now I’m in Life B.  A different person, a different time, a different world.  

 

I was prepped and taken to the operating room. My greatest fear up to this moment was having an epidural. My anestheisiologist and anesthesia tech were so very reassuring and calming, that by the time it was done and my legs had gone numb and warm, I thought my greatest challenge and fear had come and I had conquered the day.

The nurses asked what music I wanted on. I chose a mellow rock station, and as my OB began the incision, I hummed along with the Eagles “Peaceful, Easy Feeling”. As I lay staring at the ceiling, the nurses and techs told us to get our cameras ready as he was coming soon. “Here he comes….here he comes”….. and then everything was silent. No talking, just shuffling. I couldn’t breathe, I couldn’t hear my baby, I couldn’t understand. I kept hearing my OB saying over the hurried tones and heaviness in the room, “He is beautiful…he is beautiful” What happened after that I have shared before. A blunt nurse, a knowing look, a handful of supportive doctors and nurses…and a handful of those who weren’t.

As I was wheeled out of the operating room without my baby, the first person I saw in the hallway was my father. He was beaming, looking at me expectantly, waiting for that moment. All I remember was crying and shaking my head when ours eyes met.

I remember sometime later friends and family coming to visit in the room some time later. There was whispering, and hugs, and tears.  There were congratulations and there were doubts. There was optimism and there was fear. There was heartbreak of the most unspeakable intensity but there was hope. There was a feeling that God was in the room. We knew in our hearts we had been given something more special than we expected.

For six days Henry fought for his life in the NICU, and won. There is so much to remember and so much to forget from those 6 days. I have to record the memories so I can always remember and finally forget.

I want to forget waking that first night. My body seized up and struggling to breathe from the pain.

I want to forget the feeling of not having you in my arms or at the very least in my sight.

I want to forget the nurses looks of concern and sadness for me. For us. I never wanted to be pitied.

I want to forget the look on the Neonatologists face when he gave us confirmation.

I want to forget the first sight of my husband, sobbing uncontrollably over our precious baby wrapped in wires and tubes, unable to move or be held. I couldn’t move to hold Carl or you. I wanted the world to blow up. It was too much. I want to forget that I wanted it all to be over.

I want to forget that I told friends not to visit. That I asked nurses to put up a no visitors sign. That I was ashamed. That I felt like I was broken. That we weren’t good enough. That we didn’t belong.

I want to forget standing in the hospital shower, having refused pain medication, sobbing in the hot water, bleeding and broken, paralyzed by fear and devastation.

I want to forget screaming out to anyone who would listen, in pure raw ugly anger.

I want to forget the things I said. 

I want to forget the things I thought.

I want to forget , seconds after you were breathing again, before being rushed to the NICU, what you must have seen on my face when they brought you over so we could look at each other quickly, for the first time. Oh how I so desperately pray you didn’t see sadness or fear on my face. I can’t bear the thought of that. I pray you felt my heart exploding with love for you. The sadness on my face was not because of you, but because I wasn’t strong enough. I let fear overcome faith. I let shock overcome joy. I try everyday, when I look at your face in the morning and when I kiss your face goodnight, to make up for that moment. Oh how I pray you forgive me.

.

I want to remember that first morning after you were born when I held you and your tubes to my bare chest and I felt electricity. It was life that ran through you to me. I realized then you were the baby I was born to have. You were MINE.

I want to remember laughing with dear friends who came to see you and me.

I want to remember Carl proudly escorting any and all visitors up to visit you in the NICU. The proudest PaPa in the land.

I want to remember refusing pain meds and pushing myself in the wheelchair through the long hallways to get to you, my baby.

I want to remember Facetiming each night with my brother. Sharing the joy, fear, and shock.

I want to remember listening to Carl reciting the story of “Ferdinand the Bull” to you, from memory, at your side in the NICU, everyday. You are our little Bull. All we want is for you to be healthy and happy.

I want to remember watching my long since divorced parents, when they thought I was asleep, holding each other, crying and laughing with each other in that godforsaken hospital room. You see Henry, you brought love, light, and unity, from your very first breath.

I want to remember scrubbing into the NICU to visit you, and looking at my Mom and saying, “I think that’s Henry crying. He is crying for me!” And I was right. I had waited so very long to hear you cry. I rushed (waddled) to your side and cherished each and every wail.

I want to remember Dr. Glenn, coming to visit daily. Sitting with me, crying with me, and sharing Nutrigrain bars with me. Oh how you surprised us little Henry. We would laugh, and then become silent, reflecting on what secrets you had kept from us.

I want to remember the doctors who helped us conceive you, coming to visit. They commented on how beautiful you were. So perfect, so precious. I caught one of them  visiting you regularly. The said they just couldn’t stay away.

I want to remember the NICU nurses who treated you as their own. Tracy your warrior. Danielle your protector and soother. Benton your advocate, who made sure I was there every three hours with breastmilk. Who surprisingly was also a male lactation consultant, (nothing surprised me anymore) whose eyes welled up when explaining to me how strong you already were.

I want to remember my nurses who comforted me. Cleaned me. Dressed me. And protected me. Who finally medicated me once they convinced me I wasn’t any good as a Mother if I was in pain.

I want to remember the moments God was with us, as close as the air we were breathing. When Carl met a hospital worker in line in the café, who struck up a conversation, and took Carl back to the NICU through an employee only shortcut.  He said to Carl, not knowing anything about our situation except that we had a baby in the NICU, “You know, my daughter has Down Syndrome. She is the light of our lives.” And smiled at Carl as the elevator doors closed. That was God.

I want to remember how we kept finding pennies around the room and in the hospital. A calling card from our guardian angel.

I want to remember talking to a very dear friend, whose Mother who had passed, and how we both knew she was next to your side. Comforting you. Keeping watch over you.

I want to remember an unfamiliar nurse, waking us at 3a.m. with a binder full of pictures of her granddaughter, who happened to have Down Syndrome.

I want to remember that last night in the hospital where you finally stayed with us in our room. The nurses took you to the “regular” nursery where I stood in my nightgown, forehead pressed against the  glass, and watched them take your measurements and assessments. I enjoyed every second, realizing that this is what it would have felt like that first morning you were born, if you hadn’t had to be taken from me and gone to the NICU. I enjoyed every second of what felt like being normal. Of feeling like all the other Moms. Oh how I still struggle with that feeling daily. Sometimes I feel so alone. So unlike any of my friends or my family. Parenting a child with a little extra is like living on an Island. Often lonely and often frightening.

I want to remember waking in the wee hours of the night, and watching my Mother sleep in the hospital recliner next to me. Carrying and bearing my pain above hers. Loving me fiercely. Believing in me. Pushing me. Demanding of me to rise to the occasion.

I want to remember the sweet young man who escorted us out of the hospital. His name was fittingly, Emmanuel.  All of 18 years old, He told me of his childhood. Of growing up with many sibilings. Of how all a child really needs is the love and patience of his parents.  And according to him, “ We were gonna be alright.”

I want to always remember leaving that hospital.

I want to remember that moment, an hour after you were born, when I looked around the room at family and friends, and I knew in my heart all would be well. It was a fleeting moment of peace, but a deep, certain peace I felt.  Our story was being told just as it was meant to be. Your father and I were chosen to bring a little bit of perfect magic into this world. We are the bearers of you, our Henry. The life, the love, and the laughter in the Universe of many.

I want to remember, that in that moment, one year ago yesterday, the world stood still and I knew just as I know now….Nothing is broken.  There are no regrets.  You are perfect. You are a miracle. You are love.

 

 

Of course I did

I knew she was there. I never saw her face, but that part of me that knows things did. Mom passed her several times at the grocery store. Never looking at her, never noticing...but I did. Mom finally got me to sleep in my stroller while she was shopping. I was never this hard to put down, but today it was like I was trying to stay awake for something. I finally gave up and closed my eyes. It was then that Mom saw her. The young woman brushed past the bagel case and the light clicked on Mom's face. Mom walked up behind her slowly and waited for confirmation. Once the young woman turned, Mom scrambled for her name due to the surprise of the situation, shocked to see her here. When they had first met, this woman was planning on moving away at the end of last July. How was she here? Mom froze and suddenly screamed out once she got over the coincidence, "Tracy!" The young woman turned around grinned and she and Mom exchanged hugs and this and thats. When the young woman peeked in my stroller and remarked how much I had grown, my eyes popped awake from a deep sleep. I just stared at Mom and then turned my head to see her. When our eyes met, I smiled at Miss Tracy like I have never smiled before. It made Miss Tracy and Mom cry. (Eyeroll) You see, Miss Tracy was my very first NICU nurse. I knew her because hers was the face I saw while I was poked and prodded and encouraged to breathe, to live. She soothed while others hurt. Miss Tracy is the one who let Mom sob next to my hospital bed without telling her to cheer up or make her feel in the way. Miss Tracy encouraged me to eat and reported my progress to Mom and Dad each time I ate another milliliter. Calling at all hours of the night to report something, anything positive. Miss Tracy called to tell us that some mysterious "stranger" must have put mittens on me after Mom was upset that no one would cut my nails. I had been clawing and scratching my face to pieces. (Miss Tracy, I saw you do it when you thought I was sleeping). . Miss Tracy was the one who whispered "don't let them do that to him" to my parents when the doctors wanted to repeatedly stick me with needles because the lab wasn't doing their job correctly. She knew my parents were the only ones who could stop that nonsense, and they did. And Miss Tracy was the one who agreed with Mom that the one thing good about the old days was that you could have a baby who was different, but you could go on living life and maybe never even know it. That sometimes the truth doesn't just hurt, it hurts so very much. And finally, Miss Tracy was the first person who reminded Mom that I was a miracle and not a statistic. Thank you Miss Tracy for being my first advocate. And yes Miss Tracy I did "just look at you like I remembered you", because I did.

Never again

Dear Diary,
Occasionally around the office water cooler, I have heard my peers talk about their "hour long" therapy sessions. I have only ever participated in 30 minute sessions myself, and have always found their retelling of tired muscles and sore baby bodies to be all a bit overly dramatic. A standard session is thirty minutes. How could just an additional half hour wreak such havoc on toddler morale? Well today, due to a scheduling error, I found out. What transpired over the course of the next hour can only be described quite simply as torture. I was forced to ride on a swing, play on squishy stairs, bang on a baby piano, and roll around on a yoga ball. All without any breaks for snacks, bottles, or to slobber on my favorite Mardi Gras beads. As if all that playing wasn't cruel enough, I was then subjected to hugs, adoring faces, and cuddles. I screamed and pouted in defeat and drooled all over both therapists, but alas, my cries of protest and exhaustion went unnoticed. It wasn't until I became silly with fatigue, pushing out my belly, blowing bubbles at all who would listen, and passing gas, that I was granted respite. I was huffing and puffing and even attempted to fall asleep face down on my yoga mat. My brothers and sisters in arms were telling the truth and I was wrong to ever have doubted. An hour is just too horrific for any baby to endure when it comes to therapy.
Thoroughly winded,
Mr. Baby

A day with friends

Dear Diary,
Today was grand! I woke up late after a wonderful night with MoMo. She came to stay with me while my parents were at some silly function. I don't know where they were and I certainly don't care because I had my MoMo ALL to myself. My wish was her command, and I rewarded her with smiles and cuddles. Momo even let me PLAY in the bath! Mother's time management skills are so horrendous that I only ever get a quick dip. Water thrown in my face, my nether regions handled in a less than delicate fashion, and often shampoo left in my hair. It was so wonderful. We even watched late night T.V. together as I have decided, as of late, that sleep is overrated. The next day,I spent the afternoon with all my friends, faunts, & funcles. (Those are friends who are like Aunts and Uncles)
We sat on blankets outside. My friend Jack showed me his earthworm collection, Cohen made sure I had toys, and Aiden and Evie made sure I was wrapped up under the blanket, and well fed. I loved sitting in Aidens lap. I only cried when I decided I had played too much and realized I really should have taken that nap I chose to skip. The day was so wonderful being around friends, that I overheard Father telling Mother that, "with friends like ours, I know Henry will always be safe, loved, and looked after."

Guaca-mall-e

Dear Diary,
Mother took me to the mall today for our first mall date. I was so happy to be going to J.c. Penneys, because oh how I love Ellen, so it just makes sense. I got so overwhelmed with excitement that I screamed and then passed out as we were walking through the parking garage. I made it 5 feet from the entrance.
When I awoke, we were in the food court. Sweet Heaven. I ate some prunes, wore some banana, and made love eyes at the skylights.
As we were leaving, a very strange man kept peering into my stroller and waving. I felt like telling him that if I was going to smile I would have done so by now. I finally caved and gave him a grin. He was satisfied and wandered off to harass a young sales clerk. He was quite old and unsteady on his feet. Mother mentioned something about him trying to steal me and my lifeforce. All I could think of was how the ever present element of danger in a mall food court is invigorating to the soul. We had one last errand to run at Dilliards. All the sights and smells of the old women at the perfume counters rose to an intolerable level for me. I proceeded to have a proper meltdown. As Mother hurriedly paid the clerk, another elderly clerk, (is everyone over 85 years of age in malls on a weekday?) leaned over and inspected my carriage. "You know, a family took their stroller on the escalator today, and the baby fell out. There was blood everywhere." Mother recoiled in horror and practically ran out of the establishment. I wanted to grab that woman by her saggy jowls! Does she not know to whom she was retelling this tale?My mother needs only a hint of a cautionary tale to send her into a paranoid fit. I imagine we will only be shopping at ground level stores for the remainder of the season!
I can't say I remember much about the rest of the trip. I did in fact get to see Penneys. Unfortunately it was through half lidded eyes as I was screaming at the top of my lungs for no apparent reason. It's been 24 hours since our date, and I haven't stopped screaming since. Except of course to eat, or sleep for 4 hours last night.
Until our next adventure,
H.W.H