I Am Allowed

December 2, 2016December 2, 2016 HandMeDownsLeave a comment

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?

What It Should Have Said

July 22, 2016July 22, 2016 HandMeDowns6 Comments

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!

Down syndrome

A Cup of Milk

July 19, 2016July 19, 2016 HandMeDowns3 Comments

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!)

Down syndrome

He Speaks My Language

April 15, 2016April 15, 2016 HandMeDowns1 Comment

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”.

Down syndrome · Uncategorized

After Down Syndrome

March 20, 2015March 21, 2015 HandMeDowns4 Comments

Everyone has at least one day in their lives that they could call “life changing”. When applied to my life there are a few moments that come to mind; high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again. I can tell you the month date and year that all of those things occurred, they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life. One thing that they all have in common is the joy that came with these special moments and the tears shed by me or others that were looking on with love and pride.

But there is another moment, one that will be with me until the end of my days. It’s a moment that I’m not proud of, a moment full of anger and hate and tears. Three years ago today, I was blissfully unaware that I was about to add another “life changing” moment to my list. I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings, and leave me shaken, ashamed and confused.

When I think about it, I don’t really remember much about March 20^th, 2012; it wasn’t anymore special to me than any other day. I couldn’t tell you what I had for breakfast, lunch or dinner. I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter. I’m sure I was happy, or as happy as a pregnant lady chasing a toddler could be. We had some scary news earlier in the pregnancy, that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

And then the next day came. I remember going to work and having a fairly pleasant day in Triage, I chatted with friends, very few knew that we had an amnio, so it wasn’t on the forefront of my mind. As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in. So I did just that. I called him back, and then March 21^stwas added to my list of life changing days. It wasn’t a happy occasion; the tears that were shed were not ones of pride, joy, or love.

I can sometimes still feel fear and confusion that I felt after hearing the Doctor utter two little words “Down syndrome”. I can still feel the tears that rushed down, soaking my steering wheel and t-shirt. I can still picture the confused look on the old man’s face, who tapped on my window to check on me. I can still hear the three words I shouted in anger at God as I pulled out of the parking lot “I Hate You”. And I can still hear the thoughts echoing in my head about my unborn son, “I Don’t Want You”.

As I said, it wasn’t a moment that I remember proudly. My initial reactions left me feeling guilty and angry at myself. I went home that night, kissed my sleeping daughter and changed into my pajamas. My in-laws came over to discuss our results. I ate cold Ramen noodles. I had told my mother in law, “I like them cold”, when she urged me to eat them, I didn’t want to tell her that I had no desire to eat anything. I cried some more and then went to sleep. And then it wasn’t the 21^st anymore.

Over the following weeks and months I learned as much as I could about life with a child with Down syndrome. I prayed. A lot. I forgave myself. My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further. Then Gabe came and slipped seamlessly into our lives; Mommy, Daddy, Daughter and Son; our perfect family. I like to think of the days before Gabe as the days “Before Down Syndrome”.

Those were the days before words like chromosomes, trisomy, Down syndrome, low tone, therapy, advocacy or acceptance were part of my every day vocabulary. The days before I understood what it meant to use people first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends, that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a time line, throw it out the window and be okay with it. Those were the days before I fell in love with a blue eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome.

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

Down syndrome

Use Your Words

January 20, 2015January 20, 2015 HandMeDowns1 Comment

Before I began my career as a nurse, I worked as a preschool teacher (and I still wanted children!). I said things like “use your walking feet“, “teeth are for smiling and eating apples but not biting our friends” and my personal favorite “use your words“. I find myself using similar sayings even now when speaking to my children and sometimes even with my patients. However, I never thought twice about requesting a child to use their words, until I realized that my son might have difficulties forming and using his own words.

The idea that I may not hear the word “mama” uttered from his sweet little mouth until he was quite a bit older made my heart ache a bit. I could remember vividly when my daughter, still small enough to be in her pack-n-play, woke up in the middle of the night to nurse. She requested in a small but almost desperate tone for “Mama”. My husband looked startled, and asked me if I had heard that.

I had heard it, and was almost in tears, because I had heard much more than those two little syllables. I had heard, “I love you, I need you, I know who you are and you have earned the right to be called my mama”. Okay, so most of that was probably the sleep deprivation that our daughter imposed on us with her insistence on not sleeping. EVER. But there is something so special about BEING mama for your child for the first time.

Fast forward a couple of years and I found myself with a different little one in the same pack-n-play in our room. One particular night I sat staring at his little swaddled form and wondering, when will I be “Mama” to him. What I found over the next few months is that “Mama” sounded different when said from Gabe. To him “Mama” was outstretched hands and a giant soggy grin. It was a speed crawl with head tucked under for maximum efficiency directly to my ankles. It was a wobbly walk along the furniture to be wherever I was, just so he could place his chubby hand softly on my knee and look up at me with such adoration in his eyes that it could make my stomach flip flop. Currently, it’s a blonde hair, blue eyed toddler, pulling at my tshirt hem, and saying “Ah-Mee” in his tiny toddler voice.

You see sometimes communication looks or sounds different that what we expect. For most, communication consists of the words that we can hear. The understandable things that are spoken from ones mouth to another’s ear. For some it could be their hands that communicate for them, allowing them to share their desires and appreciation. For others, it could be written word, or touch to speak apps, or taking you by the hand and showing you what they mean. The important thing to know is that communication can take on a variety of forms. It’s imperitive that we take the time to recognize that despite what you might or might not hear uttered from someone’s mouth, what they have to say is just as important to them as what you have to say is to you.

I challenge you to just take a moment the next time that you have the opportunity to meet someone who’s style of communication seems different than yours, to stop and HEAR what they’re trying to say. It may take a little extra time for them to share it with you, but I’m almost certain that it will be worth it.

Down syndrome · Uncategorized

Are You Ready?

January 3, 2015January 5, 2015 HandMeDowns10 Comments

I’m a baby blogger. I don’t mean that I neccessarily blog about babies, I just mean that I’m fairly new to the world of blogs, blogging and everything that comes with it. So I am going to blame my lack of posts on my newness. It has nothing to do with the holiday craziness, working, nursing a flu ridden husband back to health, trying and failing to prevent my children from catching the flu and pink eye, nursing them back to health and organizing, reorganizing and giving up at organizing the christmas gifts that my children were blessed with throughout the entire month of December.

However, I CANNOT let another moment go by without sharing this challenge for change that has been thrown down by an incredible woman. Katie at Changing the Face of Beauty has worked tirelessly since 2012 to change the perceptions of society. It started as a website highlighting children of all abilities through photography. The mission was simple; encouraged mainstream media and companies across the globe to include individuals of all ability in their advertisements and promotions. Katie’s intiiative has certainly changed perceptions and is continuing to gain momentum. And why shouldnt it? Why shouldn’t children and adults with disabilities have an opportunity to promote the brands that they know and love?

Recently Katie issued a challenge; #15in2015. The goal is to convince at LEAST 15 retailers to feature individuals representing a variety of abilities in their advertisements during 2015. Using the #IMREADY individuals across the globe have began calling out their favorite retailers, businesses, brands, and the like, challenging them to step up and join in! To be one of the first (of many I’m sure) to come along side this community and show their support for inclusion.

Changing the Face of Beauty has already made it super simple to join in and challenge whatever retailer you love the most. Take your choice of social media outlet and tag the business (or bussinesses) of your choosing. Add in a few hashtags including #IMREADY, #15in2015, #changingthefaceofbeauty and garnish with a photo! There you go, thats it. It wont take too long, and the resulting change will be monumental.

It can be easy to miss a few little voices, but the public cannot ignore the crowd chant “I AM READY!”. So go on, get to it! And remember “The power of one, if fearless and focused, is formidable, but the power of MANY working together is better” Gloria Macapagal Arroyo.
　

Gabe has called out #thechildrensplace, #oldnavy, #gymboree, #jellybeans, #thekidscourt, #melissa&doug, #walmart, #mobywrap, #medela, #brightstarts, #target, #carters, #mattel, #toysrus, and #playskool

Do you think they’re ready to represent?

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Down syndrome · Mommy Lessons · Uncategorized

Sibling Love

December 11, 2014December 25, 2014 HandMeDowns5 Comments

So the holidays are a pretty crazy time of year for everyone. Add in therapy, volunteering at my kids schools, a sick grandma, work and a blog and something is bound to get left out. Hence the lack of posts lately….I am sorry.

When I was pregnant with Gabe I thought over and over about how Abi would treat her brother. An irrational part of me thought that she would see that he was “different” and not want him. I was worried that she would feel neglected and left out. I had no idea that those things would really happen, but not because Gabe was born with Down syndrome, but because he was born in general!

The first few days we brought brother home from the hospital, Abi was clingy and unhappy. Baby was getting way more time than she was with mommy and she didn’t like that! But after the newness wore off and I perfected the mommy juggle Abi began to tolerate her brother, even going so far as to snuggle him, share with him and cram his pacifier into his mouth every now and then.

Then Gabe began to move. He started first by grabbing and pulling her hair. Then he began rolling front to back and back to front across the floor to get to her. Then he mastered the belly creep and before long he was chasing her down on his hands and knees. Little by little her tolerance of him taking her toys was exhausted and a love hate relationship was formed. He loved her and she hated the fact that he did!

Anywhere Abi was Gabe wanted to be there, watching and staring at her with adoration. Attempting to do the things that she was doing, even if that meant using the specific toy that she had to do so. As a mom, I began to grow concerned when Abi began to tell me that she didn’t like brother, because he took her toys and smelled like cheese, which apparently made her gag. I began to watch, hoping that I would see a glimmer of love somewhere, and that their bond wasn’t really just one sided.

And then it happened. Gabe was playing with another child, who promptly bopped him on the head, twice and made him cry. Out of nowhere came hero big sister, crouching behind poor beaten baby brother, guarding him as if she were a mama grizzly. She glared and snapped her fingers at the little offender and comforted her “Baby Chubs”. Despite what she says at home, when we are out in public, she is his protector and he is her comfort. The two of them always aware of where the other is and often looking up to check on one another.

I know that siblings don’t always get along, but that’s just part of sibling love. It’s a special kind of love, formed out of necessity and tolerance, but grown over time to be an unshakeable bond. I can’t say I always like my brother (sorry ky 😉 ), but if you mess with him, you better watch out for sister! I know that as the years go by we will act as referees in a variety of battles, but deep down I know that Abi loves her brother and that he absolutely adores her.

Check out the Gabe Logan Production, “Sibling Love“!

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Down syndrome

For The Days You Remember

October 23, 2014 HandMeDowns2 Comments

In Sometimes I Forget I wrote about how easy it to forget sometimes, that our son has Down syndrome. There are some days that the fact he has Down syndrome is no different than the fact that he has blue eyes, or blonde hair. It’s there, but no big deal. It is such a small part of him, that it’s easy to forget, until I remember.

Sometime I remember and am in awe at all he has overcome. I am inspired by his determination and will. I am proud if his accomplishments and achievements. I am confident that he can conquer anything that this world has for him. I am entranced by his laughing eyes and goofy antics. I am captivated by the unconditional love that he and his sister show towards each other. Somedays I remember that I am the mom of a child with Down syndrome and I am completely okay with that.

Then some days I’m not. The realization of it grips my heart with such a fierceness that it seems to take my breath away. There is a heaviness that overcomes me as I look upon my son wishing that I could take away the extra chromosome. The one that reveals itself in his eyes, his walk, his speech. The one that forces him to work ten times harder than his “typical” peers to achieve. The one that makes him a target for glances that linger seconds too long and conversations uttered in hushed tones. The fear of the unknown coupled with worries for his future leave me paralyzed. Have I done enough? Can I do enough? To ensure that the world is changed enough for him to not just live and coexist in, but to thrive and excel and inspire.

There isn’t much that can be done to prevent those days. But for the days that you remember, and begin to feel overwhelmed, remember that you’re not alone. I have those days too. I find comfort from others who have beaten down the path before me. I find safety in walking neatly in their footsteps. Their words give me encouragement and hope that those days will become less and less as my child grows. I find security in holding my boy close and accepting the hugs and kisses he so freely give. To hold his hand in mine reassures me that together we will conquer all.

On the days that you remember, also remember how far you’ve come. Allow yourself to be reminded of the incredibleness that is your child. A being that was fearfully and wonderfully made. A son or daughter who has overcome insurmountable odds to even be here. Take a moment to remember the other days, the ones that occur more often, the days when you’re okay.

Because, you are. Even on the days you remember and you feel like you’re crumbling, just know that you’re okay. You’re not wrong in how you feel, you’re a mom, who wants what every other mom wants. This day will pass, you’ll go on and weeks will pass before another one. Then months and then years and eventually you will look back and wish you had known on those days that you remembered, that will be okay.

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Down syndrome

Proposition to Disney…

October 16, 2014October 23, 2014 HandMeDowns3 Comments

When faced with situations that are unfamiliar or uncomfortable we often reach out to others for their support, encouragement or guidance. When a baby or toddler isn’t sure how to respond in a situation, you can often see them looking to their parents to gauge their reaction. It’s innate, we are not meant to face life’s challenges alone.

After receiving the news that our son would be born with Down syndrome, I sought out other parents who had walked the path I was now walking.
I found comfort in their congratulations, encouragement in their photos and hope in their stories. I gained friends from across the globe, friends who spoke the same language as I. We said things like Trisomy 21, early intervention, low tone and spoke in letters like OT, PT, and ST. I know that at any point, I can share my deepest darkest feelings with them and they GET it. The don’t judge, they get it, they’ve been there too.

I have had the opportunity to connected with many, even flying across the US to spend a week with an amazing friend, who wouldn’t be I’m my life had it not been for our sons. I am blessed to call many of them friends and confidantes. With Gabe came an entire tight knit community that spans continents. I am honored to be in a place where I can now, offer congratulations, encouragement and hope to new and expectant parents.

It is through this community that I happened upon a request to sign a petition. The parents of a sweet toddler named, Delaney Skye have made a simple request to Disney. They’re asking for Disney to offer role models that children with Down syndrome can relate to; role models that children of any ability can relate to.

Keston Ott-Dahl, Delaney’s mom and author, had this to say, “Disney has done such a great job inspiring children, generation after generation, to be good people. They are in a unique position to directly change the way future generations and societies view people with Down syndrome”.

Remember when I said that when in unfamiliar or uncomfortable situations we often look to others for guidance? This is a perfect example! Ott-Dahl continues “Disney can teach future generations to be more compassionate and more accepting and in judgmental of kids who are not like them.”

This is the chance for the children of this and future generations to see their childhood role models supporting individuals with Down syndrome and maybe even having their own Trisomy 21 hero. Allowing children to see kids with Down syndrome as the hero or heroine is a perfect opportunity for Disney to assist in moving from awareness to acceptance. How inspiring it would be for a child with Down syndrome to see a child just like him or her save the world and be appreciated for their abilities?

I have seen this community move mountains, change lives and alter the perceptions of those around them. Here is a chance for you to help continue the forward progression towards acceptance by altering the views of a generation. I hope that you will take time to sign this petition and to eagerly wait with me for a hero or heroine who’s chromosomes don’t matter.

Click to sign Delayney’s petition

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