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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After Down Syndrome

  

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 20th, 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 21stwas 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 21st 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.

   


Use Your Words

imageBefore 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.

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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.

Are You Ready?

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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.
 

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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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You don’t have like it to be thankful

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It’s Thanksgiving, the one day of the year that we are specifically challenged to show our appreciation for the blessings in our lives. While I’m sure that we are all thankful throughout the year, this holiday is an excellent reminder to celebrate and promote thankfulness. All month long I’ve seen people posting about what they’re thankful for; their families, their jobs, their friends, their children, their satisfaction. Each person taking time to recount the blessings in their lives and saying “thank you” for them. My children have brought home hand made projects that express their gratitude for their mommy, daddy, sibling, suckers and even water.

Reading through everything through this month got me thinking; almost everything that everyone is thankful for are things they like. It’s easy to be thankful for those things; suckers are delicious, how can we not be thankful for them?! But, what about the things we don’t like? What about the things that happen throughout the year that aren’t delicious, aren’t so fun, aren’t so wonderful. What about the things that happen that may make you feel frustrated, or disappointed, or even angry? The events that occur that may leave you shaking your head and throwing your hands up in mock surrender; “I just can’t do it anymore, I give up”?

Why do we have to be thankful for those things? 1 Thessalonians 5:8 says; “In everything give thanks”. IN everything, it doesn’t say you have to be thankful FOR everything. I mean, if you stub your toe you don’t have to do a happy dance and shout, why thank you stupid couch! It friggin’ hurts! But, this verse challenges us to be thankful IN everything, in every moment of our lives, whatever season we happen to be in, the good and the bad, in the happy and sad places; give thanks.

How are we supposed to do that? It’s really easy to be thankful when we’re happy, when things are pleasant, when things are easy. But when things aren’t, it can be difficult to be appreciative. Just like it can be hard to see the sun through the clouds, you’ve still gotta try. Try to find the “silver lining”, if you wanna call it that, try to find the things you CAN be thankful for IN your current situation, or season.

I am not an eternal optimist, it’s hard to be thankful when things are tough, but I know what it’s like to not be thankful. To seek out and focus on all of the bad stuff, to only be concerned with what isn’t and what might not be. It’s a sad, frustrating and lonely place. When your focus is solely on those things, it can be hard to see the positive and to find anything to be thankful for. It’s hard, I get it, but here’s the deal: “if you see no reason for giving thanks, the fault lies only in yourself” (Techumise).

I’m not always thankful for Gabe’s extra chromosome. I don’t like how it makes him have to work even harder to accomplish tasks that other children seem to breeze through. I don’t like seeing him frustrated because he cannot convince his mouth to make the words he wants to say. I don’t like that he lives in a world with others who may overlook his incredibleness because their focus solely on his lack of ability.

But I am thankful for what has come with it. The community that we have been able to become a part of and the friendships that have blossomed because of it! The understanding that milestones don’t need to occur on a time line. The ability to slow down in life and appreciate the accomplishments of each of my children in a new way. I am thankful for that extra chromosome for showing me a whole new side of ability and with it a different way to view to world. It has taught me about unconditional love and how to be an advocate for both of my children.

You don’t have to like the bee sting to appreciate the honey. I can’t guarantee that I will always be thankful in the moments that are hard and that I don’t understand, but I till always try to find the things I can thankful for. If I ever feel like there is nothing around me that I can appreciate then I’ll look into the past and be thankful for where I’ve been and I’ll look to the future and be thankful for where I’m going. I hope you can do the same.

Happy Thanksgiving!

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For The Days You Remember

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.

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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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Proposition to Disney…

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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