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I Am Allowed

I am allowed. I am allowed to have bad days. Terrible days even!

Sometimes it’s a spilled cereal, lost my favorite shoe, dog ate my stuffed animal, I don’t want peanut butter and jelly for lunch, don’t make me wear my coat in twenty below freezing weather, six year old girl nuclear equivalent melt down kind of morning. 


Sometimes it’s a stubbed toe, dog puked on the carpet, flat tire, traffic jam, coffee stain on my new shirt, scuffed new boots, forgot my wallet, long lines full of annoying people kind of day.


Sometimes it’s a forgot to take the trash to the curb because I work nightshift and can’t remember what day it is, mountains of laundry, neglected dishes, overstimulated hopped up on McDonalds children, piles of homework, too much on my plate kind of night. 

Sometimes it’s all of those things and more. Let’s face it, life isn’t always sunshiny days and happy rainbow pooping unicorns. Things happen. Horrible, no good, terrible, very bad days will come. Sometimes it’s not even something that happened we just wake up on the wrong side of the bed! It’s just part of it. 

I am allowed to have bad days. I am allowed to have days where I don’t smile all the time. Where I can sigh and roll my eyes when I want to. I am allowed to have the kind of day that you know was awful just by looking at me. I am allowed to have those kind of days and it not be because my child has Down syndrome. 


I shouldn’t have to kill myself trying to pretend like I live in a world where blue birds always sing and pancakes don’t make my thighs get fat. A world where I’m afraid that if someone sees so much as a chink in my mommy armor they’re going to think that I’m losing my crap because of the number of chromosomes my son has in each of his cells.
Because you know what? On those bad days, the little extra dose of joy and laughter that I find in my son, the little extra understanding and compassion that he shows to those around him, the little extra tolerance and patience that he allows me, the unabashed silliness that spreads like wildfire from him, can make those bad days all better.

Sometimes, it is my child with Down syndrome, who makes the bad days good. Not visa versa. So guess what, I’m allowed to have bad days, and it not be his fault. Got it?

 

Don’t let fear stop you from celebrating 

“What if something happens?” I remember thinking the day of the photo shoot. I turned that thought over and over in my head as I watch my husband and two children playing in the grass in front of our vehicle while waiting for the photographer. “Please don’t let them get dirty” I called, Spouse nodded and waved at me in response. I chewed on the inside of my cheek, my heart racing as I walked around to the back of the Jeep to get our stuff ready. I glanced up at my husband, he was busy monitoring the kids. I pulled the digital pregnancy test out of my purse and peaked at it. I felt butterflies in my stomach every time I saw those words: “Pregnant”. They sat there in dark bold letters on the oval screen. I smiled to myself, I was going to surprise him with the news during our photo shoot. 

After deciding to add a third child to our family we had began calling our potential third child “Pancake”. This was after an incredibly hysterical conversation between Glenn and Abraham from The Walking Dead regarding Glenn and Maggie’s pregnancy and “trying to make pancakes when pouring the Bisquick”. We talked a lot about Pancake. What it would be like to have three, how our oldest would react and how our youngest would handle not being the youngest anymore. We were excited and hopeful, patiently awaiting our Pancake. 
I got a positive pregnancy test on May 22nd. I took probably ten more just to make sure and was only finally convinced when the digital test gave me a clear “pregnant” reading. I called my OB and they did serial blood work to see that my HCG was climbing like it should. Everything looked great. I kept the little secret for about a week while I prepared the special announcement. I was going to surprise my husband during our family pictures, I wanted to capture his reaction to the news about Pancake. After all this was going to be our last baby, I wanted it to be special. 

The photographer arrived and smiled at me conspiratorially, she was as excited as I was. I carried a container of Bisquick and the pregnancy test hidden away in my purse. Spouse toted the chalk boards to the center of the park where we planned to snap the photos. We distracted the kids with a video on the phone and stood back to back, we were to write something sweet to one another on our chalk boards. Of course I already knew what mind would say: “Pancake, due January 2017”.  


We faced the camera and then one another. I saw his eyes slide across the words once and then again. I saw them widen with realization and then the giant smile lit up his face. That ear to ear grin of an excited dad to be. The camera clicked furiously capturing those first moments. Each snap ensuring that these memories would last forever. He wrapped me up in a big hug and asked how long I had known and a handful of other pertinent expectant father questions. I showed him the test and handed him the container of Bisquick, we laughed together at our inside joke and held each other tight. 


Today I would have been 24 weeks. I would have been over half way through my pregnancy. The kids and their dad would have been able to feel baby moving inside my swollen belly. I would have outgrown my jeans and moved into maternity clothes. We would have been trying out names, pulling out bags of clothes that had been saved from brother and sister. We would have been so much nearer a family if 5. But something did happen, we lost Pancake at 8 weeks. It was by far one of the hardest and worst moments in our lives. 

My answer the day of the photo shoot to the question of, ‘what if something happens’ had been, ‘Then I will have wanted to celebrate while we could. I would have wanted to cherish this baby while we could. I would have wanted memories and treasures. I would have wanted everyone to know how happy we were and how much we wanted our Pancake. I would have wanted Pancake to know how much he or she was loved. I would have wanted something tangible so in the moments when I feel that joy has left me, I would be able to hold tight and see what a gift I had to be able to have those special moments with my husband and children, all three of them”.  

Miscarriage is not uncommon, it effects roughly 3 million women per year in the US alone. It’s emotionally and physically painful. It’s something that almost every woman worries about when she first finds out that she is pregnant. It is a fear that robs many women of the joy of celebrating their pregnancies from the earliest possible moment. And it’s not fair. 

It’s just not fair that the fear of loss should prevent us from sharing the wonderful news that we are expecting. That It should stop us from telling those we’re close to that we are carrying something amazing within us. It’s not fair that the fear should prevent us from celebrating and savoring those moments that for far too many end way too soon. It’s unfair that in the midst of a loss, that fear we had, prevented us from sharing with those who could support us the most through it. 

Don’t let it. Don’t let the fear of loss, or societies recommendation of cautious optimism stop you from celebrating, from sharing, from cheering and shouting your joy. Own it. Savor it. Cherish the moments from the earliest possible second that you are able! Had I considered that ‘what if’ question and chosen to act on the side of caution, I would have missed out, the fear would have stolen the blessed memories that I do have of our Pancake. You may have days, weeks, months or years, but don’t let the fear of “what if” stop you from enjoying the moments you do have.  I’m so very glad I didn’t. 

Hands 


I went to bed tonight holding my daughters hand. She was snuggled up next to me, fingers interlaced in mine. I can remember when those fingers were just barely big enough to wrap around my extended index finger. They were so small and appeared so fragile, but they gripped my finger and my heart with such fierceness that it surprised me. I can remember when those fingers spread out across my palm, barely taking up a fourth of it. She would wiggle those chubby little things, pat my open hand and grin gleefully. 
I can remember when those little fingers would reach up and stroke my cheek as she nursed. Soft and feather like, they would linger just for a moment before reaching out for my own hand, to curl hers contentedly around. I can remember when those little fingers would wrap around the first two fingers on each of my hands. She would hold on as tight as possible for pulling from me strength and support, while standing triumphantly on skinny wobbly legs. 

I can remember when those little fingers let go of mine for the first time; leaving a feeling of coldness in their absence. I held my breath as she took her first few independent steps. I can remember those same fingers pushing me away when I rushed to scoop her up and help her stand again. I can remember her hand in mine palm to palm, fingers stretched as far as they could to match mine; growing. I can remember when those fingers became long enough to reach the end of my palm; I could still just barely bend my fingers and capture her wiggling hand, making her giggle.


I can remember when those hands began to spend more time holding toys and dollies than they did holding my hand. I can remember when those fingers, longer and stronger, yet still so small wrapped around a pencil, and drew out her name in long shaky letters. I can remember when those fingers reached for mine, warm and sweaty, now almost half the size of my own hand. She squeezed mine tightly, and whispered, “Will you remember to pick me up?” I smiled and nodded reassuringly, and watched her walk into her first day of school.

I can remember the moment that I realized that there will come a day when I can’t remember the last time I got to hold her hand. She will have grown; her hand as big if not bigger than mine. That day looms ahead of me, so near and so far, filling me with hope and sadness. There will still be those occasional moments, where as an adult, she may reach for my hand, holding tightly, drawing strength and support, just as they did when she was learning to stand on her own. 

There will be a day when she will have other hands to hold. Hands that are her equal, her match, her mate. Hands that are smaller than hers and that will capture her finger and heart in one single squeeze, as hers did mine. And there will be a day, when my hand will no longer be there for her to hold. 

But for now, I can remember last night, and how her fingers, growing longer and stronger by the day, twisted into mine. Relaxing ever so slightly as she drifted off to dream land. For now I can make the most of every opportunity to take her hand into mine, and savor those moments; so when the days come that her hand is too busy for mine, I will have plenty to remember.

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What It Should Have Said 

I was cleaning out my closet today; sorting through old clothes, photographs, boxes of odds-n-ends. The kids were happily running around the house playing with each other and being about as loud as a herd of elephants wearing microphones. They came running into the closet, scampered around the mess for a moment or two and then turned to run out. Gabe bumped into the chair that I was perched upon on his way by I had to let go of the box I was holding to steady myself. I reached down to pick up the papers that had been scattered and stopped.  
I recognized it instantly. It was creased and wrinkled. There was a spaghetti sauce stain on the corner of it and ink smears where my tears had fallen onto the paper. I opened it up, smoothed it out and took a deep breath. I knew what it said, I had read it enough times that I practically had it memorized. It was given to me tucked inside a manila folder and placed in a binder alongside pamphlets and informational flyers. It was a life changing paper, one that altered the course of my family’s lives.  


It said, 47, XY, +21, abnormal karyotype. Analysis shows three copies of chromosome 21 (Trisomy 21) in each metaphase cell examined consistent with the clinical diagnosis of Down syndrome. 
It said, common manifestations include mental retardation, cardiac abnormalities, small stature, gastrointestinal complications, hearing and/or visual disorders and hypotonia. Social development is typically more advanced than intellectual development.
It said, there is a greater than 30% risk for fetal loss in the second half of pregnancy.
It said that there is an increased risk for chromosomal abnormalities in subsequent conceptions.
It said to me that my child, my son, was abnormal on a cellular level. That he would face physical and intellectual challenges. That there was a chance that I would not get to meet him. And it said that it could happen again. 

 It said to me that life as I knew it was over, the child I had dreamed of was gone.  
It said things that made me not just cry, but sob uncontrollably. Things that made me go through the next several weeks worrying about the safety and well being of the baby growing within. Things that painted a drab and dreary future of abnormalities and complications. Oh how wrong was that paper.  
What it should have said was; we have completed your testing. You are having a baby boy. His cells are more unique than most of the ones we see. Inside of each and every one of those microscopic discs is an extra twenty first chromosome. While the addition of this extra chromosome may make it more difficult for him to do all the things that children without Down syndrome do, it does not mean that he can’t. It does mean that he will find his own way to do them and he may do them at different times than children lacking this extra chromosome.  


What it should have said was; While this little extra piece may seem daunting and overwhelming, included within it are some amazing things! There is a laugh that is contagious, it can fill a room and make even the most somber smile and chuckle. There is a determination that will sometimes test the limits of even the most steadfast parents. But that determination will be used to accomplish many things! There is an infectious joy that passes from this one little person to all those around them. There are hugs and cuddles and kisses and snuggles that are absolutely unbeatable.
What is should have said was: There are lessons tucked away inside that additional twenty first chromosome. These lessons are best taught by the little one who carry them. Lessons on acceptance, unconditional love, empathy, compassion and selflessness. Lessons that makes us view the world around us in a completely different light. Lessons that makes us stronger as parents. Lessons that remind us not to rush and to take time to enjoy the little things in life. Lessons that accumulate to make those around this little being, just a little bit better.
What is should have said was: Inside of this chromosome there is an extra dose of resilience and drive, humor and personality, understanding and patience. There is strength, forgiveness, steadfastness and even temper! There is sweetness, fierceness, willfulness, and stubbornness. There is rhythm and dancing, silly songs and imagination. There is intelligence and brilliance, ability and accomplishments.
What it should have said was: This chromosome’s effects are not just isolated to the one whose cells contain it. It will impact and touch all those who encounter this child. Hearts will be softened, perceptions altered and lives changed by this sweet boy. It will change you. You will learn more about yourself than you knew before. You will be an advocate, a voice. You will find a strength that you didn’t know existed, a boldness that may even surprise you.  
What it should have said was: With this information may come a feeling of fear, worry, anger, disappointment, uncertainty or even guilt. Those feelings are normal, it can be challenging to imagine what life will be like caring for a little one with so much extra inside of them. Take some time and be patient with yourself. Remember that the baby you are carrying is still the same baby; you are just one of the lucky ones whose child contains a little extra amazing.


What it should have said was: Congratulations, it’s a boy!

 

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A Cup of Milk

Despite all of Gabes amazingness, he does struggle with speech. He is great at single syllable words but often leaves off the last sound; cat=cah, dog=doh. He is wonderful with frequently used words; Mommy, Daddy, sister, NO! and bad dog, are all clear as can be. He can put small words together to make requests; “milk please”. But unless you’re around Gabe as often as we are, or your familiar with the signs that he uses along with the words he says, it can be hard to understand him. Even I have trouble some days. 

But!  That doesn’t stop him from getting his point across.  He recently had a tonsillectomy and it made his voice and words even more muffled than usual.  I was experiencing a great deal of difficulty understanding him and he was pretty frustrated with me. Usually he will use sign along with his words to tell me what he is needing, but this specific day he was just too uncomfortable, tired and frustrated. After repeated failures of understanding what he needed, he turned around and huffed out of the room.  I didn’t go after him as he will usually return after a few moments and try again or change his mind and do something else. 

He was gone for maybe ten minutes. When he returned to sisters bedroom where we had previously been trying to figure out what he needed, his desire was VERY clear. He was dragging with him a jug of milk, and carrying not just a sippy cup, but a matching lid as well!  I was awestruck. Not just by him figuring out a way to communicate his needs but by everything that he had just accomplished. 

I’ve talked before about the challenges that Gabe faces and how that extra chromosome of his can make things harder for him. Motor planning (thinking about what your body needs to do and then doing it), problem solving and critical thinking are difficult. But Gabe continues to find ways to complete these tasks and surprise us! 

Aside from the strength it takes for a little 28 pound boy to yank open the fridge door and pull out a jug of milk. He then dragged it out of the kitchen and down the hall!  Before he did that though, he knew that he needed something to put it in!  Not just any something, but specifically a sippy cup WITH a lid. We have a variety of sippy cups in the kids’ drawer, they’re tossed in there with the lids mixed in.  Gabe had to sort through, pick out a cup AND a lid that matched each other. He did. He brought that matching cup with lid along with the jug of milk all the way into sisters room for me to pour him something to drink. 

When I took stock of what all he had returned with, I was shocked and overjoyed. Gabe had taken it upon himself to show mommy what he needed when I couldn’t understand. But it was so much more than that too!  It was critical thinking, problem solving, strength, motor planning, sorting, matching, and it was amazing.  This little guy doesn’t let others ability or inability to understand him stop him from expressing his needs!  He is determined and creative and I am once again in awe of this little guys resourcefulness and determination!  

I took a quick video of him in sisters room with his items before pouring his milk!  (Which he enjoyed!) 

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Deafening Silence 

It’s in the quiet moments that I hear it the most. The soft pop and hiss of tiny fractures spreading across my aching heart. It reminds me of that first step you take onto thin ice. You feel the millimeter of give beneath your boot, and hear the thick crack as the ice groans in protest under your weight. Your stomach plunges, your heart races, your breath rushes out in rapid steamy gasps. Frozen, you wait, knowing that at any minute you may plunge into the icy depths unsure if you will resurface. 

It’s in those quiet moments that I know it’s coming and right now there is nothing I can do to stop it. I know as time goes on I will be able to slowly ease back from the edge, creeping ever so lightly to a different and stronger path. But for now, I fall, over and over into that frigid painful water, struggling for breath, tears blurring my vision, fighting against myself while I attempt to gain my footing in flailing failure.


I know I’m not alone in this; a myriad of women have been exactly where I am. Many others are still here with me, picking up the pieces of their hearts, attempting to mend them. To put them back together as they were before. But, hearts can’t go back as seamless and as perfect as they were before a miscarriage. There will always be little chips, cracks and craters that remain. Little pieces of yourself that were lost along with your child. 

Miscarriage is never an easy word to say. It’s a word that brings nothing good with it. It’s a word that makes people uncomfortable. One that is spoken in hushed whispers and with solemn expressions. A word that carries pain and sorrow; a life changing word. It’s a word that steals away the innocence and bliss of pregnancy and leaves in its place fear and questions. It’s a word that thrusts you into an unfamiliar and scary new world; one you don’t want to be in. It’s a word that is often hard to say, even by those who have endured it.

Why is it so hard for us to speak freely about this? Not just for myself but for other women as well? Why is there such a hesitation to share our loss, our grief? Miscarriages are not uncommon, they’re not new and they’re not going away. So why do so many women feel like they have to suffer in silence, only sharing with a handful of family members and close friends? Why do we feel we can we only find solace within the secret groups of other mothers whose hearts are chipped and cracked like ours?


Maybe it’s because we’re subconsciously afraid that we will rub off on someone. That our bad luck can spread from person to person like a nasty unseen virus. Maybe it’s because we know how much it hurts. And we’re afraid that if we say the words out loud to someone who has been there as well that their heart, despite all the repairs, will begin to crack and creak as they are reminded again of their loss. 

Maybe it’s because hardly anyone knew that we were pregnant? Most women wait until it’s “safe” to share the news of the secret new life growing inside of them. Having been a Labor and Delivery nurse, I know that no one is safe. Ever. But if we haven’t told anyone about the baby, how do I tell them when its gone? Because that’s a really easy conversation to have. Do you say “So last week I was pregnant, and this week I am not” or “Please excuse my pallor and mascara runs, I lost my baby, the one you didn’t know about”. 


Maybe it’s because, right now we have near constant physical reminders of our loss that we can’t bear to see sad eyes, or hear “I’m so sorry” or “It wasn’t meant to be” or “there was probably something wrong with it anyway” or “you can always try again”. Maybe it’s because we want just one place where we can go and play pretend. Imagine that we are not shattered, pretend that we’re whole and perfect; that we’re not holding ourselves together with sheer will and Oreo cookies.

Maybe it’s because in a society that is so centered around choice that a determination of actual “life” has yet to have been made and that we are afraid our baby “doesn’t count”. That our loss is no real loss, our heartbreak is just our own making. Or maybe it’s the fear of being blamed. That somewhere deep inside that person who we have just told, is thinking it must be our fault someway or somehow. We had to have done something wrong, or definitely didn’t do everything right to be where we are. 

Maybe it’s none of those things. Maybe it’s just fear. That saying the words out loud will send us plunging through that thin ice again to drown again in our tears. Or a fear that talking about will make it easier and that easiness will mean we are forgetting. Not forgetting the hurt or sorrow, but forgetting the baby that flew away from this earth before we did.  

Maybe it’s because it really just sucks. And it hurts. And because we can’t say the words without crying. And because maybe we’re tired of crying, but feel guilty if we aren’t. It’s a crummy roller coaster ride full of ups and downs, that leave us feeling dizzy and disoriented.


It’s in the quiet moments that I know, regardless if I talk about it or not, say the words aloud or not, that I will slowly pick up the pieces of my heart and fit them back together. They won’t be seamless, it may be hard to get them to stick together, and there will always be gaps, but it’s in those places that I will tuck the little life that was a part of me for too short a time. It’s in those places that I will place the lifetimes of hopes and dreams formed during the too few moments we were together.  

It’s in the quiet moments, that I hear it the most. That soft hiss and pop of breaking hearts. It’s because of those moments that I know the silence must be broken. I have had a miscarriage and it hurts. I am slowly putting the pieces back together and while I do I remind myself that “He consoles us as we endure the pain and hardship of life so that we may draw from His comfort and share it with others in their own struggles”. You don’t have to be alone in those quiet moments, I am here if you need me. We can heal together. 

He Speaks My Language

Gabe got hurt. More specifically he got a splinter. It was a fairly good size splinter too! It was in the outside crease of his hand and it was red and irritated looking. I wouldn’t have known that it was there, because it was cleverly hidden in the lines of his chubby little hand, but he told me about it. He told me about it. My sweet little boy came up to me, held up his little fist to show me and said, “Ow, tiss”.  
I stared at him. My face was blank and my mouth was open. I apparently sat like that for a moment too long because he then repeated the request, shoving the little fist even closer to my face, “OW, tiss” he said again. The insistence in his tone and repeat of his request snapped me out of my amazed stupor. I took him over to the couch, flipped on the light and removed the splinter using my master splinter removing tools (tweezers). I gave it another kiss, he murmured ‘kyoo’, his version of thank you, and ran off to play with his ‘scoobus’.  

I stared after him for a long time; I didn’t realize that I was crying until I felt the tear drop onto my arm. I know what you’re thinking, “no big deal, he had a booboo, mommy kissed it, all better, so what?” but it IS a big deal. It’s a really freaking enormous jumbo large deal. It’s not just a request from an injured toddler. This is an entire new world of realization and understanding we’re talking about. Gabe recognized that he had an injury, he knew that mommy could fix it, how mommy could fix it and then he told me about it. He didn’t just speak, he used language!

  
Speech and language are two different things. Speech is the physical production of sound. It is the articulation, voice and fluency of words. Gabe can speak, he repeats words that are said to him in the best way he can. He uses approximations of words, for example, dog is ‘dah’, thank you is ‘kyoo’, see you is ‘syou’. He also uses signs to speak along with his word approximations; he will say ‘mil’ and sign milk, he will sign grandma and say ‘mama’. He also speaks “Gabeinese”; a combination of babble and word approximations that he puts together and uses to chat with anyone who is breathing within a ten mile radius.  

But language is a method of human communication. Language is a rule based set of processes. Language represents much more than just words, it represents thoughts and ideas. Language is social, it’s communicative, it’s a skill and it is difficult. It’s receptive, understanding others and it’s expressive, sharing thoughts or ideas.

  

Let’s think about it like this; you see a cat. You recognize that the animal you are seeing is a cat. You think of the word cat in your mind and you want to say the word cat. So your brain puts the word cat in a car (motor impulse) and sends it down the highway (neurons) to your mouth (oral motor system). Your lungs have to fill up to produce the air to flow through the vocal cords to produce the sound that will turn into cat. The back of your tongue moves to the roof of your mouth in anticipation of the ‘c’ sound, your lips widen and your tongue drops down away from the roof of your mouth for the ‘aaa’ sound and then the tip of your tongue presses against the roof of your mouth, just behind your front teeth, to produce the “tuh” sound.

Imagine a bicycle instead of a car, a clogged up highway, a mouth with muscles that aren’t as strong, feeling that isn’t as sensitive and TWO words to make! It doesn’t sound like such an easy process now does it? Speech is really freaking hard! Language is even harder! That’s why this is such a big deal. Gabe recognized that his hand hurt and he was able to name that feeling. He was able to problem solve, what will make this feel better? Mommy! He was able to put a name to his feeling and establish a request in two seemingly simple words, “ow, tiss”. He used language to express his pain and his desire for me to help him. And it was beautiful. It was heartwarming, it made me want to jump up and down and it made me cry.  

I have cried a lot in the four years since we received Gabe’s diagnosis, it should be noted that I am kind of an emotional person anyway. In the beginning I had mostly sad and angry tears; those disappeared the moment I held my sweet boy for the first time. I do still have rare moments, where I stare too far down into the future and I begin to shed some worry filled tears, but those are few and far between. Mostly the tears that fall now are ones of joy, happiness and laughter, or when I step on one of the kids’ toys in my bare feet. Now I guess when I do step on a toy, instead of crying, I can just look at Gabe, hold out my foot and say “ow, tiss”.