So, over on instagram we're doing some fun and different stuff for the month of October - which happens to be Down Syndrome Awareness month!
One of the things we're doing is a Q&A. I asked for questions and now I'm answering them! Today's answer got too long for Instagram - and rather than cut it down I decided to just go ahead and blog my full answer.
Here goes.
Q: "What is the biggest misconception about Down syndrome, in your opinion?"
What first comes to mind is the idea that all people with Down syndrome require a lot of extra support. When Zoey was denied the right to attend enrichment classes it hit me hard! These people knew only that she has Down syndrome, they didn't ask any questions, they simply said "we aren't equipped for Down syndrome"! So for us, not being "equipped" is like saying: we can't keep a close eye on your daughter, help her here and there with fine motor skills, be patient when she wants to observe rather than join in, or take the time to listen closely to distinguish what she's saying to us. I don't know about you, but when I think of places that provide classes for children I feel like those are all things that should be a given! Any child could require the same "extra" help as mine, but because of a diagnosis my child was denied - and that needs to stop!
•••
I think the biggest misconception is the idea that people with Down syndrome are somehow incapable (in any way, shape, or form). People with Down syndrome are accomplishing BIG things! But ya know what, it's not even about that. It's about assuming competence and giving people a chance to show you who they are (not what they can or can't do)!
•••
Finally ... I fear that there is a misconception that people with Down syndrome must accomplish big things to be seen as equals in this fast paced society we live in. Those of us parenting children with Down syndrome are doing so at a pretty incredible time! We are seeing people with Down syndrome accomplish great things, it's exciting and it absolutely gives us a lot of hope! but, after how far we've progressed in the last fifty or so years, I'd hate to see the scales begin to tip a different direction - to a new level of "comparison". I've actually had people write to me regarding this and it breaks my heart! Our kids are amazing guys, AMAZING! ... it's not about reading or doing math equations, it's not about knowing all the dance moves or hitting a home run, it's not about awards or fame - they're amazing because they are exactly who they were meant to be!
Tuesday, October 18, 2016
Friday, January 1, 2016
Happy New Year!
2016.
It's 2016, officially.
I've decided to have a theme song this year, it's a song I've been singing for months. The more I heard it & sang it, the more I found my own meaning within it.
I came to realize that Zoey is my "fight song".
Many people don't understand and I get it. I have four children. Three beautiful and amazing humans came into my life before Zoey. Three little heart throbs called me mama and depended on me before Zoey did. Annicka, Jericho, & Liam are very much loved. I treasure each of my children, please don't ever doubt that. That said, life is different with Zoey.
If life is an ocean, Zoey is my "small boat ... making big waves". Because of this little girl, my life -our lives- are forever changed. She set "into motion" a life none of us could have ever dreamed. She is that "single word" that can "make a heart open". I've seen this happen. People who have only just met Zoey have been overcome with emotion, in tears ... not tears of sadness or of pity, but tears of love because there's just that something about her that goes straight to your heart.
She's just a little girl, but she is my "one match" allowing me, us, to "make an explosion".
Explosions of love and adoration - toward her, toward others, and also from her. She adores us in ways that can't be explained. She can be a stinker and she's not afraid to be sassy to us, but if we tell her she's hurt our feelings you can bet you're gonna see her face fall, get an I'm so sorry, and receive a big hug! Explosions of pride. We are proud to have Zoey and proud to raise awareness of Down Syndrome. Explosions of thought. A million thoughts a day run through my mind. Sometimes I write here on this blog, sometimes I take photos or make videos, sometimes I wonder what more could I do in the down syndrome community - so many thoughts. Explosions of fear and then calm. Explosions of worry and then peace. Explosions of happiness, laughter, learning, growing, progress, milestones, skills, appointments, development, friends, and the purest joy I've ever known.
Over the years, there have been many "things I didn't say" and those things are absolutely "wrecking balls inside my brain". I'm ready to "scream them loud". As for the things I've been saying for all these years, feeling so unheard, well I'm going to keep saying those things ... "can you hear my voice this time?"!
Zoey is my fight song.
She makes me constantly want to be better. To "take back my life" and not let it be full of things that aren't important. To "prove I'm alright" by showing everyone that she is such a blessing. Not once has she ever been a burden. "My power's turned on" because of her and for her. I can't just let others tell me how things should be for her, I am her mother and I have to know that I have the power to say no. I have the power to stand up for what is right. Always. "I'll be strong" because she needs me to be and because I am teaching her to be. I have to make the choice to stand strong for what I believe, even when "nobody else believes". Some people think I'm a pushover, I've even come to believe this ... others think they've seen all the fight I have, but "I've still got a lot of fight left in me".
So here's to you, 2016. A new year. New goals. New hopes. New dreams.
It shall be a year of strength. A year of new thinking. A year of standing up and standing strong. The year of my fight song.
*lyrics quoted from "Fight Song", by Rachel Platten.*
It's 2016, officially.
I've decided to have a theme song this year, it's a song I've been singing for months. The more I heard it & sang it, the more I found my own meaning within it.
I came to realize that Zoey is my "fight song".
Many people don't understand and I get it. I have four children. Three beautiful and amazing humans came into my life before Zoey. Three little heart throbs called me mama and depended on me before Zoey did. Annicka, Jericho, & Liam are very much loved. I treasure each of my children, please don't ever doubt that. That said, life is different with Zoey.
If life is an ocean, Zoey is my "small boat ... making big waves". Because of this little girl, my life -our lives- are forever changed. She set "into motion" a life none of us could have ever dreamed. She is that "single word" that can "make a heart open". I've seen this happen. People who have only just met Zoey have been overcome with emotion, in tears ... not tears of sadness or of pity, but tears of love because there's just that something about her that goes straight to your heart.
She's just a little girl, but she is my "one match" allowing me, us, to "make an explosion".
Explosions of love and adoration - toward her, toward others, and also from her. She adores us in ways that can't be explained. She can be a stinker and she's not afraid to be sassy to us, but if we tell her she's hurt our feelings you can bet you're gonna see her face fall, get an I'm so sorry, and receive a big hug! Explosions of pride. We are proud to have Zoey and proud to raise awareness of Down Syndrome. Explosions of thought. A million thoughts a day run through my mind. Sometimes I write here on this blog, sometimes I take photos or make videos, sometimes I wonder what more could I do in the down syndrome community - so many thoughts. Explosions of fear and then calm. Explosions of worry and then peace. Explosions of happiness, laughter, learning, growing, progress, milestones, skills, appointments, development, friends, and the purest joy I've ever known.
Over the years, there have been many "things I didn't say" and those things are absolutely "wrecking balls inside my brain". I'm ready to "scream them loud". As for the things I've been saying for all these years, feeling so unheard, well I'm going to keep saying those things ... "can you hear my voice this time?"!
Zoey is my fight song.
She makes me constantly want to be better. To "take back my life" and not let it be full of things that aren't important. To "prove I'm alright" by showing everyone that she is such a blessing. Not once has she ever been a burden. "My power's turned on" because of her and for her. I can't just let others tell me how things should be for her, I am her mother and I have to know that I have the power to say no. I have the power to stand up for what is right. Always. "I'll be strong" because she needs me to be and because I am teaching her to be. I have to make the choice to stand strong for what I believe, even when "nobody else believes". Some people think I'm a pushover, I've even come to believe this ... others think they've seen all the fight I have, but "I've still got a lot of fight left in me".
So here's to you, 2016. A new year. New goals. New hopes. New dreams.
It shall be a year of strength. A year of new thinking. A year of standing up and standing strong. The year of my fight song.
*lyrics quoted from "Fight Song", by Rachel Platten.*
Tuesday, December 1, 2015
Embrace It
Happy December!
By now, most of us who celebrate a holiday this season have begun the traditions of decorating! We got started this past weekend! So this morning as I sat here, admiring our tree, the words "embrace it" came to mind!
I've already lost track of how many posts across social media I've read in the past week regarding the decorating of a Christmas tree, but the message each time seemed to be: it must be perfect. There was also a common theme of children helping and parents "fixing" later.
We decorated our tree as a family. There was a certain teenager who, for whatever reason of the moment, refused to join in; but apart from that it was a family activity! It was a time of fun & togetherness - with a mama requested group hug at the conclusion!
So, this morning as I sat quietly and gave it a good overview, I noticed things. Our ornaments must get lonely easily, because they seem to be inclumps groups! Some of them don't seem to know which way to face. There's quite a few that are way down on the lowest branches, dangling into the blank under tree space. Ninety-nine percent of the ornaments are on the "front" of the tree. We've yet to put anything on top of the tree and, oh look, a random ornament (bought as a toy because it looks like Angelina ballerina) seems to be catching a nap on a branch under the twinkling lights.
Do you think my tree looks "perfect"? Would it make it into a magazine? Or be featured on a blog or Instagram page? Nope. I know it wouldn't, but I say it is perfect.
It's perfect because it was done in love - with all the excitement and anticipation of this most special season. What joy my children had, after begging me and continually asking if it was yet "time to do the tree?"! It's also perfect because it's a memory. There may come a time where I stand in front of a Christmas tree alone, recalling memories with each ornament hung. I can imagine myself wishing my children were still small, helping me make what many might call, a messy tree!
So I will continue as I have for a few years now. I will not "fix" our Christmas tree. I will embrace it for all that it is and all it represents.
By now, most of us who celebrate a holiday this season have begun the traditions of decorating! We got started this past weekend! So this morning as I sat here, admiring our tree, the words "embrace it" came to mind!
I've already lost track of how many posts across social media I've read in the past week regarding the decorating of a Christmas tree, but the message each time seemed to be: it must be perfect. There was also a common theme of children helping and parents "fixing" later.
We decorated our tree as a family. There was a certain teenager who, for whatever reason of the moment, refused to join in; but apart from that it was a family activity! It was a time of fun & togetherness - with a mama requested group hug at the conclusion!
So, this morning as I sat quietly and gave it a good overview, I noticed things. Our ornaments must get lonely easily, because they seem to be in
Do you think my tree looks "perfect"? Would it make it into a magazine? Or be featured on a blog or Instagram page? Nope. I know it wouldn't, but I say it is perfect.
It's perfect because it was done in love - with all the excitement and anticipation of this most special season. What joy my children had, after begging me and continually asking if it was yet "time to do the tree?"! It's also perfect because it's a memory. There may come a time where I stand in front of a Christmas tree alone, recalling memories with each ornament hung. I can imagine myself wishing my children were still small, helping me make what many might call, a messy tree!
So I will continue as I have for a few years now. I will not "fix" our Christmas tree. I will embrace it for all that it is and all it represents.
Wednesday, November 25, 2015
Thanksgiving.
Thanksgiving.
As we approach this holiday each year, we make the effort to pay attention to all we have to be thankful for! There have been years where I joined in with doing daily Facebook posts, sharing something I'm thankful for. Some years I've even copied that over to the blog. As we know this blog has been seriously neglected for years now ... I really do want to get back to blogging, but I just never seem to find the time!
I'll be honest, lately I find myself a little less ... shall we say, content?! On the one hand, this year has brought me so many people ... on the other hand, I feel so lonely sometimes. So in all these thoughts of feeling a little left out and way too far away from family and close friends ... I decided to stop it.
STOP.
Stop the whining. Stop the moping. Stop the pity party.
just. stop.
... and, as my five year old says, open my eyes!
Open my eyes and not only recognize but acknowledge at least a few of the endless blessings I have to be thankful for. So that brings me here, to share. I have a feeling this post might get a little long and it may end being a bit of a wrap up of our year ... and that's just fine with me!!
I am abundantly thankful to have four healthy children! We've had a few moments this year where we didn't know if health might be an issue ... but each time we received reassurance from a specialist or test results that were all normal. This is not something I ever take for granted. I pray for many parents & children that are fighting big fights. I also know of many families who have seen their way through the darkest days of illness ... coming through as warriors, some with their sweet ones still by their side and some with their sweet ones gaining angel wings. I know that health is a priceless gift.
I am thankful for friends and community. I've talked before about the honor we've had to meet some incredible people this year. I may have "fought" moving here (you can't truly fight it, so denial is a better word I suppose) but now I wish I never had to leave. There is an incredible down syndrome community in the area and I have been able to join in more this year, that makes my heart SO happy! Zoey has some little buddies, too, and that is an answer to this mama's prayers! Whether face to face or via social media, knowing and sharing with others who "get it" is an incredible thing!
I am thankful for family that have been able to visit us! This summer all our travel plans came to a halt when the hubby had to have surgery. The thought of not seeing his family was hard, but then they came to us and it was so good!!! I am also thankful that my parents are able to travel and see us a few times a year - and this year my mom & I got to go on a trip of a lifetime! How incredible to travel to Australia and see family for only my second time ...and meet brand new family (more on that in a second), too!!! Family is precious. I wish we weren't so far from our family, but I am thankful for the times we do get to spend together.
As for the new family, how grateful I am to have met my aunt. The sister my mom never knew she had. I got to be witness to a side of adoption I never dreamed I'd be a part of and my mom "got" the sister she always dreamed of. It was a treasure to meet Dawn and her husband, daughter in law, and granddaughter!
and finally, I will wrap it all up with being thankful for life.
every day I wake up, I breathe in a new day, I hug my children & say "I love you" & kiss their cheeks! I wish I always remembered to stop and take in the abundance to be grateful for. I wish I never complained or felt sorry for myself. I am a work in progress and I am eternally thankful for the Lord who knows my heart ... His grace is sufficient for me. So, I will always get up and brush off the dust and say:
As we approach this holiday each year, we make the effort to pay attention to all we have to be thankful for! There have been years where I joined in with doing daily Facebook posts, sharing something I'm thankful for. Some years I've even copied that over to the blog. As we know this blog has been seriously neglected for years now ... I really do want to get back to blogging, but I just never seem to find the time!
I'll be honest, lately I find myself a little less ... shall we say, content?! On the one hand, this year has brought me so many people ... on the other hand, I feel so lonely sometimes. So in all these thoughts of feeling a little left out and way too far away from family and close friends ... I decided to stop it.
STOP.
Stop the whining. Stop the moping. Stop the pity party.
just. stop.
... and, as my five year old says, open my eyes!
Open my eyes and not only recognize but acknowledge at least a few of the endless blessings I have to be thankful for. So that brings me here, to share. I have a feeling this post might get a little long and it may end being a bit of a wrap up of our year ... and that's just fine with me!!
(all photos from our Thanksgiving "shoot"! felt food from Nene's Numnums!)
I am thankful to have my husband home to enjoy this holiday season with us. Last year he was gone and missed all of it. It's not easy adjusting to him being gone, then adjusting to him being back - we all have our challenges with that ... but this year, he is home!
Along those same lines, I am always thankful for my husband's hard work & dedication to provide for us. His job may take him away from us at times, but he has a job. We have health insurance. We have dental insurance. These are things that deserve thankfulness!
I am abundantly thankful to have four healthy children! We've had a few moments this year where we didn't know if health might be an issue ... but each time we received reassurance from a specialist or test results that were all normal. This is not something I ever take for granted. I pray for many parents & children that are fighting big fights. I also know of many families who have seen their way through the darkest days of illness ... coming through as warriors, some with their sweet ones still by their side and some with their sweet ones gaining angel wings. I know that health is a priceless gift.
I am thankful for friends and community. I've talked before about the honor we've had to meet some incredible people this year. I may have "fought" moving here (you can't truly fight it, so denial is a better word I suppose) but now I wish I never had to leave. There is an incredible down syndrome community in the area and I have been able to join in more this year, that makes my heart SO happy! Zoey has some little buddies, too, and that is an answer to this mama's prayers! Whether face to face or via social media, knowing and sharing with others who "get it" is an incredible thing!
I am thankful for family that have been able to visit us! This summer all our travel plans came to a halt when the hubby had to have surgery. The thought of not seeing his family was hard, but then they came to us and it was so good!!! I am also thankful that my parents are able to travel and see us a few times a year - and this year my mom & I got to go on a trip of a lifetime! How incredible to travel to Australia and see family for only my second time ...and meet brand new family (more on that in a second), too!!! Family is precious. I wish we weren't so far from our family, but I am thankful for the times we do get to spend together.
As for the new family, how grateful I am to have met my aunt. The sister my mom never knew she had. I got to be witness to a side of adoption I never dreamed I'd be a part of and my mom "got" the sister she always dreamed of. It was a treasure to meet Dawn and her husband, daughter in law, and granddaughter!
and finally, I will wrap it all up with being thankful for life.
every day I wake up, I breathe in a new day, I hug my children & say "I love you" & kiss their cheeks! I wish I always remembered to stop and take in the abundance to be grateful for. I wish I never complained or felt sorry for myself. I am a work in progress and I am eternally thankful for the Lord who knows my heart ... His grace is sufficient for me. So, I will always get up and brush off the dust and say:
I am thankful.
now, let's feast!!!
Saturday, June 13, 2015
down syndrome is a beautiful thing ...
so, you can read how this all started in the description of the video!
but, I had to share it over here on the blog ...
I am just so blown away by all the support and people willing to be a part of my little idea!!!
Thursday, May 28, 2015
walk for wishes ...
this is Coco, an amazing little girl who battled and BEAT cancer!!!
she was able to be the recipient of a very special wish and now she wants to give back!!!
we're in, are you???
ZoeyGrace has joined Coco's Crew for a Twilight Walk for Wishes in Sacramento
and we are thrilled to be a part of this! if you can't join us in person, please consider donating ...
we have set a goal of $100 - can you help us reach that?
visit this page to donate:
here's some information from the page:
Join me as in support Make-A-Wish Northeastern California and Northern
Nevada as we "Walk for Wishes"! What a better way to spend a Saturday
evening than to walk with friends, family and co-workers to benefit some
very courageous children in our community.
This event benefits the local chapter of Make-A-Wish to help grant wishes to children with life-threatening medical conditions in the 37 counties the Foundation serves. Your participation will bring Hope, Strength and Joy to children enduring the burdens that a life-threatening medical condition brings.
A wish brings joy, laughter and a reason to keep fighting a very grown up battle.
This event benefits the local chapter of Make-A-Wish to help grant wishes to children with life-threatening medical conditions in the 37 counties the Foundation serves. Your participation will bring Hope, Strength and Joy to children enduring the burdens that a life-threatening medical condition brings.
A wish brings joy, laughter and a reason to keep fighting a very grown up battle.
Monday, May 25, 2015
happy Memorial Day ...
today we reflect on the many men and women who have given everything for our right to freedom.
thank you.
we are so blessed to have the freedoms we do.
proud to be an American!
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