Sibling Love

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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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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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Sometimes I Forget….

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Sometimes I forget that our son has Down syndrome. It’s easy to be distracted by his two year old tantrums, his mischievous smile and go getter attitude. Gabe is kind hearted but stubborn. He immediately runs to check on sister when she is having a dramatic, I’m four and the world is over, meltdown. He will climb onto your lap randomly and stretch his little fingers up to stroke your cheek, just to say I love you.

He also destroys things. Opens drawers, pulls things out, throws them on floor. When you confront him, he ducks his head and looks up from under his eyebrows with a sort of sorry smirk. He helps pick up, sometimes, or wanders off to destroy something else. He loves music, he will start to dance the second he hears it. He absolutely cannot resist participating in a round of Itsy Bitsy, or Twinkle Twinkle, no matter how upset he may have been seconds before. Gabe can make music from anything, even the fireworks during the Fourth of July celebration.

Sometimes I forget, because Gabe is just that, Gabe. When I look at him I don’t see Down syndrome, I see my son, Abi’s brother, a sweet, willful, determined little boy.

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Sometimes I forget, and that makes it even harder when someone reminds me in a not so kind way….

Like the cashier that gave me sad eyes and spit poison in a whisper,

“I bet you wish you had known before he came out. You know they have a test for that now…”

Shock, horror, hurt and fury coursed through my body. I considered jerking her over the register and beating her senseless. I looked her up and down, I could take her….

Instead I used whit: I smiled a crazy lady smile “I know right?! It’s so much harder to get rid of them once they come out. Believe ME I’ve tried…” Jackpot! Her mouth dropped open and she stared at me in shock. I leaned over the register and whispered to her,

“What you’re saying is that it’s okay for me to kill him while he’s inside, but not outside? In my book there isn’t a difference. For the record, we knew EVERYTHING about him during my pregnancy. He is our son now and he was our son then. There is no way in hell that I would let any harm come to either of my children. Including during the time that they’re so ridiculously considered disposable.

I had forgotten, that sometimes other people don’t immediately see Gabe, they see a “downs kid”. They see poor parents and a burdened sister. I sometimes forget until I glance up and see the pity in their eye, or hear the ignorant comments in not so hushed whispers.

I sometimes forget that it’s not their fault. They just DONT KNOW.

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I sometimes forget that, that was me once too. What I knew about Down syndrome before we had Gabe, was what I’d learned from my nursing text books. It was only enough to leave me sobbing hysterically and envisioning a listless, immobile, incapable child.

Because I sometimes forget, is why months like October are so important to me. It gives our community a chance to spread awareness, to educate the public, to debunk the myths that are out there and show our children in a different light. It gives us a chance to move forward from just awareness to acceptance, so when were out in public and we are so taken by our children that we forget, that we aren’t reminded and shocked by the ignorance of others.

Sometimes Its easy to forget that our kids have Down syndrome. To us their just Gabe or AJ or Gavin or Max or Maddie. And that’s how it should be, and will be, if we continue to bring awareness and fight for acceptance; not just in October, but every day of the year.

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#BlueNYellow

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In “Down syndrome Isn’t ” I talked about how October is Down syndrome Awareness month. This year the Down syndrome community is celebrating its 30th year of bringing awareness. I’ve read through a variety of posts throughout the day, lots of great ones out there! But, what I began seeing more and more as I read through these is a sense of dissatisfaction.

It’s not just enough anymore that we bring awareness, that ship has been sailing for 30 years. It’s time that we bring about acceptance. Meriah Nichols could be described in two words, amazing and courageous. She offered up a very specific challenge today in the form of a blog post:

“Let’s try to put our awareness into action and actively accept people with Down syndrome. Let’s try and move two steps past our comfort zone, whatever that might be.”

Not only has she challenged the public to transform their perceptions of what were celebrating in October, but she offers ideas on how to personally show that acceptance. The final words on her post are “Move past the awareness. Open your arms to acceptance“.

So here I am, nodding my head in agreement. I think it’s a great idea. When I take my children out, I don’t want people around him to only be aware that my son has Down syndrome, I want them to accept him for the incredible individual that he is. I want society to accept that chromosomes don’t determine worth or ability.

If you’ve watched tv today, I’m sure that you have seen pink everywhere. Do not misunderstand me, this is an important month for Breast Cancer awareness and the thousands of warriors out there. However, I’d like to see some yellow and blue too. Our community is beyond just bringing awareness, we require acceptance and want to be celebrated this month too. We’ve come so far in just these few years, lets see how far we can get in just 30 more days. I’d like to encourage you to include #BlueNYellow in your comments, posts and status updates related and unrelated to down syndrome. You can #BlueNYellow anywhere that you deem fit. Let see if we can move past awareness to acceptance and even acknowledgement!

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Down syndrome isn’t….

 

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We all have our favorite time of year. Some of us even have our favorite months! While there are a few months that I’m pretty fond of, my favorite month just happens to be October. The leaves are usually turning colors and pumpkin flavored EVERYTHING begins to appear. There are fall festivals, pumpkin patches and of course those little pumpkin candies that I’m capable of eating my weight in. BUT all that pales in comparison to the fact that October is DOWN SYNDROME awareness month!

Something that you should know, is that October didn’t used to be my favorite month. I always used to be quite partial to June, because someone I know has a birthday that month (and she’s pretty awesome, if I do say so myself). It wasn’t until 2012 that I learned how amazing October could be! Our son Gabe was born in August and was not quite 2 months old when October rolled around that year and my family was transitioning from having one child at home to having two.

My husband and I were adjusting to feeding, clothing and keeping both children alive while our two year old was grudgingly accepting the the little thing her parents brought home was indeed staying, for good. Introducing baby number two into the family didn’t seem much different than welcoming baby number one, accept that this time around we actually felt like we knew what we were doing. The biggest difference was that Gabe brought with him and entire community. A community that I found, was celebrating during the entire month of October. The Down syndrome community celebrated anything and everything related to Down syndrome and worked hard at bringing awareness during the entire month.

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Awareness is the knowledge or perception of a situation or fact. All across the globe, people are working hard this month to bring awareness to those around them by sharing facts and information related to Down syndrome. Some post blogs, some transform their Facebook sites, and some participate in events; the options endless. Each person and their unique abilities, allow them to share about Down syndrome in their own way and all of it combined paint a picture of this incredible community and the individuals that make it up.

I want to start by sharing what Down syndrome isn’t.

Down syndrome isn’t a disease, it’s not contagious, it isn’t an illness and its not something to be afraid of. Individuals with Down syndrome do not have to institutionalized, placed in separate classrooms, ignored, excluded or treated differently. Down syndrome doesn’t destroy families, marriages, it isn’t a burden, or something that someone is suffering from. It’s a single extra chromosome in every cell. Ultimately, what that means, is that everyone person with Down syndrome is the same as everyone else, they just happen to have something extra inside of them.

Today is only the first of October, that means that there are 30 more days that I get to share all about Down syndrome. 30 more days to celebrate all of the amazing things that the little extra chromosomes contains! Be sure to check back for tomorrow’s post….

 

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You Don’t Have To Be Brave, You Just Have To Be Mommy

The word Down syndrome first came into our world a little over two and a half years ago. In “I Didn’t Want Him“, I shared my initial reaction at finding out that the baby boy I was carrying would be born with Down syndrome. I know that everyone copes in different ways; some do it better than others. I did the best I could but, despite my best attempts at appearing brave and nonchalant when it came to the number of my sons chromosomes, there were times that my facade failed. One particular event occurred while I was at work, during the last few weeks of my pregnancy.

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I had been caring for a wonderful family, who was welcoming a new baby into the world. The mom had shared with me her experiences with her young son who had Down syndrome. He was three, and she considered him to be the best thing that had ever happened to her. She eagerly introduced me to him when he arrived to meet his new sibling. I wanted to love her child as much as she did, but all I could see were his almond shaped eyes, his chubby fingers, wobbly walk and ungraceful attempts at signing “hi” and “baby”. I could feel my heart begin to pound and my breaths becoming shorter and more frantic. I excused myself and quickly made my way to the private bathroom on our unit. I murmured to my charge nurse that I would be back and asked her to keep an eye on my patient.

I barely made it to the bathroom before the dam broke and the tears flooded out. I sat on the floor, hyperventilating and sobbing. This was not a brave moment for me and my resolve was crumbling as every single fear and worry swirled through my head. The thoughts were unending, each one bringing with it an overwhelming sense of anxiety. Can I do this? Can I be the mom that he will need me to be? Will I ever get to the place where I can tell a stranger that he is the best thing that ever happened to me? Will there come a time that I only see my son and not Down syndrome? Will the bravery that I appear to have, ever be real?

I wish that I could travel back in time to huddle there in the floor with my past self. I would take her face in my hands, look her in the eyes and tell her that all the answers were YES. Tell her that as soon as she holds that little boy in her arms, all her worry and fear would fade away. That the only thing she would see when she looked at her son for the first time would the blue eyes that his daddy gave him and the button nose that she gave him. That she would be amazed at how much he looked like his sister. That in one short minute, she would know, without a shadow of a doubt that she didn’t need to be “brave”, she just needed to be Mommy.

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I wish most of all, that I could tell her, the way she would feel with each of his firsts. How she would have to hide the camera to catch him turning over. How his motivation to belly creep would be a Taco Bell taco. How she would cheer when he signed “eat” and “more”. How loud she would scream, on camera, when he stood and took his first unassisted steps. How the tears would stream down her face when he looked at her and called her mommy for the first time. I didn’t get a visit from my future self that day. I did, however, put myself back together and return to my patients room. I knelt down near that sweet boy and asked if I could give him a hug, he willingly obliged. Try as I might, his mom could see through my mask of serenity, she squeezed my hand and whispered, “You’ll get there”.

I cant tell you how, because the route is different for everyone. Its possible that it will take some longer than others. There might also be days, that feelings sneak in so quickly and fiercely that they cause you to question where you are and if you will make it. Maybe you’ve made it there already, then again, maybe you haven’t. Regardless of what point the path you’re on, I want to say, YOU will get there too.

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