A teacher's at the copier, in a hurry. She is trying her best but time is not on her side. She is rushed because how could she have forgotten about Veteran's day. Embarrassed as another teacher looks on, she quickly says "I know it looks retarded, but I had to have something for my kids to do."
I over hear this comment and that growing knot in my stomach grows, my hands clinch, and I feel anger burn deeply in my soul. I HATE that word. I repeat to myself, over and over, do you even know what you are saying? I start to contiplate in my mind if I should politely go and correct what she said. After all, I realize she was to being harmful, I understand what she was saying. But if another student walks by and hears, does that validate for that student that it's ok to use that word?
I pause for a second. Lydia's sweet face appears in my head. She is not ugly or unfit. Her beautiful almond eyes twinkle with joy, her ever so larger bridge of heroes hold her beautiful purple glasses just so. She tongue quickly pops out of her cute mouth to make you smile. Her blonde hair curls gently at the end of her fine hair. Her smile captures your heart and you are hooked. She beautiful.
Thank you to the teacher in the copier room that reminded me exactly how beautiful my child is. That rushed book that'd you were putting together was not retrarded at all. That boom did not have a delay and was not held back in progress, development, or accomplishment (Websters definition of retard). That book may have been sloppy or not what you intended, but then again I am sure that you did not intend to use the word retard.
Thank you because you reminded me that I don't need to get angry with that word. While retard may be the diagnosis of my child, it certainly does not describe her. Actually, you allowed me to be reminded again of how beautiful my daughter is. Retard cannot describe something ugly or rushed, something unintended. It simply means delayed.
To the kid in the hallway who looked at his friend and said that was retarded. Your friend was acting inappropriately. He was not delayed or being held back in his process, he was just making bad choices. I am sure you did not mean to slow him down or set him back.
However, you reminded me just how proud I am of Lydia. You reminded me that she often makes good decisions. You reminded me that she is kind to most people. You reminded me how much fun she is to be around. You also reminded me, even though she is a retard (she is slow and has developmental delays) she does not act like you or your friend. She is not obnoxious and she does have respect for others.
I am sure you did not mean to use the word retard. I am sure that you would have liked to use a word that would better explain how your friend was acting. Maybe he was obnoxious or rude or disrespectful. Our words are very important and I am sure if you would understood what you were saying, you would have chose a word that more accurately described your friend.
See when we understand the words we use and how to use them, we don't tend to offend as many people. Even the word dumb means a person that is unable to speak (the North American meaning is unintelligent). I get that these days we often use the North American definition of that word. But it is important to really educate yourself and know what you are saying.
Not only have these people reminded me that the "common day" use of retard does not define my daughter. The Webster's definition of retard tells you something about her, she is slow or delayed; but agai does not define her. I realize that sometimes the word retard is used in a very offensive way, but usually it is not.
And that word retard does not always have to make my blood boil when it is used. It can remind me of all of the great things Lydia is. It can remind me that she does not live up to the stereotypes of that word. It reminds me how capable she is. It reminds me how when I expose her to others, they are learning. She breaks down stereotypes because she shows people how very capable she is.
I am not promoting use of the word by any means, but I am trying to take one of those situations that adds unnecessary stress to me, into a positive. I don't have to explain her to anyone and I don't have to worry about everyone liking her. And usually when someone else is using that word it is not to describe my child, it is usually just a poor choice in words.
Thank you though for using that word, for making my blood boil, and for showing me that it doesn't have to ruin my day. That word can be a reminder to me of how wonderful she is!
Monday, December 14, 2015
Monday, October 12, 2015
Lessons Learned from the Passenger Seat of a 1978 GMC RV
My husband has become a bit obsessed with RVs. So much so, that he decided to take his parents RV and make it road worthy for our family. I support and love my husband, so I went along with this knowing it would bring memories for our family. When my husband asked if I wanted to ride with him on the first ride out to get gas, I just laughed. But I went. I wanted to support him. I laughed as I watched people look at us because I could only imagine how silly we looked. They were not as impressed with the outside appearance or the loud noise or the constant smell of gas, I don't think I was either!
Here is a picture of THE 1978 GMC RV!
We took it home, only getting stranded along the road once; a blown tire and smoking coming from the under part of the hood. No big deal. We had two sleeping children and one that could not pull her eyes away from the I-Pad. A quick trip back to the local gas station with some needed supplies and we were up and rolling again.
We had to clean the inside of the RV and it was a family affair. Our oldest girl was so excited about the manual roll down windows. She even thought others were "jealous" about "our sweet ride." I listened to the girls talk about the memories that we would make in this 1978 GMC RV.
Ellen wasn't kidding, this is "One SWEET Ride!"
We recently packed up that 1978 GMC RV for an extended weekend on the road. We loaded it and had no place in particular as to where we were going. The girls were giggly with excitement. I believe my husband and I were just as excited. We gave our two oldest girls a map and they were navigating our trip. They picked the roads we were driving on and the places we would stop.
Ellen found there was a Lake Ellen on the map, so we had to go check it out!
I realized then, it was the unplanned things in life that cause us to experience the most beauty. It was the things in life that we never expected that give us the best blessing and the most joy. It is the things that everyone overlooks that can be the vehicle for the best experiences.
I never thought that I wanted a child with Down syndrome, I never thought that I was strong enough to parent a child with complex medical needs. I am pretty sure I would have never stood in that line and signed up. However, I am glad that God knew that is what I needed. I am glad that I have gotten the opportunity to experience it.
A family experiencing life to the fullest, not allowing snickers or stares to get in the way!
Just like the 1978 GMC RV, it was overlooked for what it truly is. You can snarl and you can stare, you can make jokes and comment, but until you really experience the 1978 GMC RV, you don't know what you are missing. Judging it from the outside simply is not fair. You will rob yourself from some of the best times. Thinking you are better than the people who ride in the 1978 GMC RV is a disadvantage for you, because they may be the best friend you ever experience.
If I allowed myself to say that I was too good to sit shot gun in the passenger seat of that 1978 GMC RV, I would have robbed myself of the beauty that I was about to experience. That 1978 GMC RV took me and my family to some of the most picturesque places I have seen. It allowed my family to cook and laugh over a campfire. It allowed us to have memories of sitting inside of it playing games, eating food, and sleeping in confined spaces. It allowed us to experience the love of a family as it was intended to be.
The 3 girls having an amazing time on our adventure in the 1978 GMC RV!
See, you can laugh and make jokes about it, or you can jump feet first and experience things that will bring you joy and laughter, make memories, and allow you to grow closer as a family. I believe Down syndrome is no different than that 1978 GMC RV. Down syndrome is not something that you expect or hope your child has when you are expecting a baby. Down syndrome may not look pretty or inviting from the outside. Down syndrome may seem ugly and scary and like a path you may not want to travel.
However, when you open yourself up to the unexpected, when you put aside those mean comments and nasty stares, you will experience beauty as you have never seen before. You will experience love that words fail to describe. You will find yourself on a path less traveled and it is OK. You will realize that you are stronger than you ever thought possible.
I have come to realize that it is a mean cruel world in many respects and sometimes you really have to search for the good. Some people may never come to fully understand, respect, or accept the beauty that lies in that 1978 GMC RV. And that is OK. It is their loss. They are the ones missing out. And I understand that I may never change opinions or minds or attitudes about how wonderful Down syndrome is. And that is OK too. I need to live out my life in confidence that this is the path that was meant for me. I need not to be ashamed of what Down syndrome is in fear of a negative comment. Reality is, there will always be a negative comment, but Lydia is so much more than Down syndrome just as that 1978 GMC RV is so much more than its ugliness.
If I never got into the passenger seat of the 1978 GMC RV, I would have missed out on this beauty!
I am so glad that I did not let those stares and negative comments, those snickers and snarls keep me from experiencing the beauty that that 1978 GMC RV lead me to. I am also glad that I did not let my fear of the unknown of Down syndrome and the many false perceptions of what Down syndrome is to miss out on one of the greatest blessings my life has ever known; Lydibug. I'm so thankful for the lessons I learned in the passenger seat of that 1978 GMC RV and how wonderfully they have affected my life.
We took it home, only getting stranded along the road once; a blown tire and smoking coming from the under part of the hood. No big deal. We had two sleeping children and one that could not pull her eyes away from the I-Pad. A quick trip back to the local gas station with some needed supplies and we were up and rolling again.
We had to clean the inside of the RV and it was a family affair. Our oldest girl was so excited about the manual roll down windows. She even thought others were "jealous" about "our sweet ride." I listened to the girls talk about the memories that we would make in this 1978 GMC RV.
We recently packed up that 1978 GMC RV for an extended weekend on the road. We loaded it and had no place in particular as to where we were going. The girls were giggly with excitement. I believe my husband and I were just as excited. We gave our two oldest girls a map and they were navigating our trip. They picked the roads we were driving on and the places we would stop.
I realized then, it was the unplanned things in life that cause us to experience the most beauty. It was the things in life that we never expected that give us the best blessing and the most joy. It is the things that everyone overlooks that can be the vehicle for the best experiences.
I never thought that I wanted a child with Down syndrome, I never thought that I was strong enough to parent a child with complex medical needs. I am pretty sure I would have never stood in that line and signed up. However, I am glad that God knew that is what I needed. I am glad that I have gotten the opportunity to experience it.
Just like the 1978 GMC RV, it was overlooked for what it truly is. You can snarl and you can stare, you can make jokes and comment, but until you really experience the 1978 GMC RV, you don't know what you are missing. Judging it from the outside simply is not fair. You will rob yourself from some of the best times. Thinking you are better than the people who ride in the 1978 GMC RV is a disadvantage for you, because they may be the best friend you ever experience.
If I allowed myself to say that I was too good to sit shot gun in the passenger seat of that 1978 GMC RV, I would have robbed myself of the beauty that I was about to experience. That 1978 GMC RV took me and my family to some of the most picturesque places I have seen. It allowed my family to cook and laugh over a campfire. It allowed us to have memories of sitting inside of it playing games, eating food, and sleeping in confined spaces. It allowed us to experience the love of a family as it was intended to be.
See, you can laugh and make jokes about it, or you can jump feet first and experience things that will bring you joy and laughter, make memories, and allow you to grow closer as a family. I believe Down syndrome is no different than that 1978 GMC RV. Down syndrome is not something that you expect or hope your child has when you are expecting a baby. Down syndrome may not look pretty or inviting from the outside. Down syndrome may seem ugly and scary and like a path you may not want to travel.
However, when you open yourself up to the unexpected, when you put aside those mean comments and nasty stares, you will experience beauty as you have never seen before. You will experience love that words fail to describe. You will find yourself on a path less traveled and it is OK. You will realize that you are stronger than you ever thought possible.
I have come to realize that it is a mean cruel world in many respects and sometimes you really have to search for the good. Some people may never come to fully understand, respect, or accept the beauty that lies in that 1978 GMC RV. And that is OK. It is their loss. They are the ones missing out. And I understand that I may never change opinions or minds or attitudes about how wonderful Down syndrome is. And that is OK too. I need to live out my life in confidence that this is the path that was meant for me. I need not to be ashamed of what Down syndrome is in fear of a negative comment. Reality is, there will always be a negative comment, but Lydia is so much more than Down syndrome just as that 1978 GMC RV is so much more than its ugliness.
I am so glad that I did not let those stares and negative comments, those snickers and snarls keep me from experiencing the beauty that that 1978 GMC RV lead me to. I am also glad that I did not let my fear of the unknown of Down syndrome and the many false perceptions of what Down syndrome is to miss out on one of the greatest blessings my life has ever known; Lydibug. I'm so thankful for the lessons I learned in the passenger seat of that 1978 GMC RV and how wonderfully they have affected my life.
Monday, September 21, 2015
She's Always Happy
One word that is often used to describe a person with Down syndrome is that they are always happy. I have taken some time to observe Lydia and see how accurate that statement is. Honestly it drives me nuts because my mind is taken to all of the times she disobeys, yells and screams, throws a tantrum. To me, she has every emotion and really there is no difference with her than my other children. However, there is a difference!
Lydia is attracted to people as people are attracted to her. I find that no matter what she is going through she is more concerned about the stranger standing in line. She has a genuine interest in people and she has a genuine kindness in her heart. It is something that is unfamiliar to this world. When she sees someone hurting, sad, looking at her, she wants them to be happy. She doesn't see them staring at her because she's different, she just wants to see them smile.
When we are at the clinic and she's giving blood, even though it hurts her, she's often more concerned about the person drawing blood. She will start to smile until she sees the tech smiles. It is almost as if she does not succeed until she sees that person smile. Often times I find myself thinking that her mission is to bring a smile to other people's faces no matter what.
When she is eating and she's choking, I ask if she is ok. She immediately looks up in the middle of coughing to give me a thumbs up. She does not want me to worry. When she is able, you will see her beautiful smile that makes the room light up. She's not necessarily ok, but she smiles. Sometimes my heart is full and other times it aches knowing that despite her pain, other people's happiness brings her great joy.
She goes to school and gives it her all for the couple hours she is there. She is determined, she is smiling, and she is helping others. She is quick to run to someone to give them a hug, kiss and make it better or just cheer someone on with a high five. That's just who she is. However, when we get home I see her struggle. She coughs and is tired. She sits on my lap sucking her bottom lip, twirling
my hair in her tiny hands, fighting to keep her eyes open. I look at her and tell her I love her and she manages a half smile from the corner of her mouth.
She throws a tantrum because I cannot understand what she needs. She gets frustrated and angry. It is not her fault, nor is it mine, but sometimes there is no good way to change the situation. She throws her body on the ground and hits the floor, screaming. She yells and looks at me like what is wrong with you mom, why can't you understand. I do my best but there is frustration. As she comes out of the tantrum she easily forgets, gives me a hug and tries to make me smile. It is forgotten and left behind with not an utterance of it again. Her smile is still there through the frustration and she always makes sure that I have a hug or I am ok.
I watch her in the hospital when she is feeling crumby, is in pain, and just wants to be left alone.n as soon as the nurse or doctor walks in, she has a smile and is ready to give a high five or a hug. She loves people and it does not matter how she feels, she will reach out to anyone and make them smile.
She interacts with the hospital staff and lights up when they smile back. She waits for them to give
her a little bit of attention and then she turns on her LYDIBUG charm!
I guess what I am saying is she does smile a lot. But her smile is for your good and not because she is always happy. She looks for ways to make others smile, that is one of her gifts. She has the full range of emotions, she feels just like you and me. But she is built with an inner smile to make the hardest of faces smile back at her. Her smile says she cares about you, her smile says to have a great day, her smile tells you you are loved. It doesn't mean she is always happy, it only means that she thinks of others before herself!
Lydia is attracted to people as people are attracted to her. I find that no matter what she is going through she is more concerned about the stranger standing in line. She has a genuine interest in people and she has a genuine kindness in her heart. It is something that is unfamiliar to this world. When she sees someone hurting, sad, looking at her, she wants them to be happy. She doesn't see them staring at her because she's different, she just wants to see them smile.
When we are at the clinic and she's giving blood, even though it hurts her, she's often more concerned about the person drawing blood. She will start to smile until she sees the tech smiles. It is almost as if she does not succeed until she sees that person smile. Often times I find myself thinking that her mission is to bring a smile to other people's faces no matter what.
When she is eating and she's choking, I ask if she is ok. She immediately looks up in the middle of coughing to give me a thumbs up. She does not want me to worry. When she is able, you will see her beautiful smile that makes the room light up. She's not necessarily ok, but she smiles. Sometimes my heart is full and other times it aches knowing that despite her pain, other people's happiness brings her great joy.
She goes to school and gives it her all for the couple hours she is there. She is determined, she is smiling, and she is helping others. She is quick to run to someone to give them a hug, kiss and make it better or just cheer someone on with a high five. That's just who she is. However, when we get home I see her struggle. She coughs and is tired. She sits on my lap sucking her bottom lip, twirling
my hair in her tiny hands, fighting to keep her eyes open. I look at her and tell her I love her and she manages a half smile from the corner of her mouth.
She throws a tantrum because I cannot understand what she needs. She gets frustrated and angry. It is not her fault, nor is it mine, but sometimes there is no good way to change the situation. She throws her body on the ground and hits the floor, screaming. She yells and looks at me like what is wrong with you mom, why can't you understand. I do my best but there is frustration. As she comes out of the tantrum she easily forgets, gives me a hug and tries to make me smile. It is forgotten and left behind with not an utterance of it again. Her smile is still there through the frustration and she always makes sure that I have a hug or I am ok.
I watch her in the hospital when she is feeling crumby, is in pain, and just wants to be left alone.n as soon as the nurse or doctor walks in, she has a smile and is ready to give a high five or a hug. She loves people and it does not matter how she feels, she will reach out to anyone and make them smile.
She interacts with the hospital staff and lights up when they smile back. She waits for them to give
her a little bit of attention and then she turns on her LYDIBUG charm!
I guess what I am saying is she does smile a lot. But her smile is for your good and not because she is always happy. She looks for ways to make others smile, that is one of her gifts. She has the full range of emotions, she feels just like you and me. But she is built with an inner smile to make the hardest of faces smile back at her. Her smile says she cares about you, her smile says to have a great day, her smile tells you you are loved. It doesn't mean she is always happy, it only means that she thinks of others before herself!
Wednesday, July 15, 2015
Simple
I watch you sitting on the floor playing with a toy. You are so determined and there is something amazing watching you try to slide every colored wooden piece to the other side of the toy. You understand what is suppose to happen and then you try and try to accomplish it. You don't give up, not even once. You keep going despite your growing frustration. I love watching you play. I love watching you try and try and I love watching you celebrate as you accomplish what you want.
Tears start rolling down my face. There was a time when I thought that this toy should only be for babies. A time when I would have had that toy packed away long before now. I would have expected that you should be on to something new, learning and exploring things at a different age group. I may have convinced myself that you should be something more than what you are, I may have even regretted moments like this.
As I watch you and I continue to cry, you quickly glance at me. Without hesitation you get up, climb on my lap and embrace me. You say nothing, but as I look into your eyes you tell me everything. Your eyes tell great stories. You grab my face and look deep into my eyes. Then you use your elbows and wipe away my tears. You don't say anything but smile. We have exchanged thousands of words in this short while, but we haven't uttered one single word. You hug me again.
In the background music starts playing. You instantly start directing the music. You are perfectly timed with they rhythm of the song. You do it as though you were meant to direct the most beautiful music in the world. You continue directing and keeping with the rhythm until the next thing catches your eye and you are off.
I heard someone say that love is about sacrificing and giving someone else what they want, even if it means sacrificing what you really want. It is about focusing on what you have, not regretting, not longing for what you don't have. In these moments this morning, you reminded me of that once again.
You are exactly what I need, and God knew that. Sometimes I have a hard time realizing that. Too often I am caught up more in what I want and what I thought that should have been. It is sad because I miss these simple moments, I miss what was given to me, what I should be focusing on. When I spend too long in that state of regret, longing, that place of discontentment, it robs me of everything that you are and every blessing that was meant for my life.
I would ever change you, but when the moments are hard, when the months are long; I find myself wishing, dreaming of more of something else. Those moments of comparing take my eyes off of these moments. That discontentment robs me of the simple moments of love. It takes me to a place that I should not be and miss what I do have.
I realize this journey is hard, it is long but when I am not present where God has placed me, I miss out on so many blessings. This morning was a great reminder of the simple joy that you bring. The simple joy that we all miss because we are not content or we are busy comparing what that person has and trying to achieve something that is not meant for our life. If we want to find true and pure love it is focusing on what we do have and not longing for something we don't have.
In that moment, I found that I have a fortune. You told me so in our conversation this morning when we exchanged stares.
Tears start rolling down my face. There was a time when I thought that this toy should only be for babies. A time when I would have had that toy packed away long before now. I would have expected that you should be on to something new, learning and exploring things at a different age group. I may have convinced myself that you should be something more than what you are, I may have even regretted moments like this.
As I watch you and I continue to cry, you quickly glance at me. Without hesitation you get up, climb on my lap and embrace me. You say nothing, but as I look into your eyes you tell me everything. Your eyes tell great stories. You grab my face and look deep into my eyes. Then you use your elbows and wipe away my tears. You don't say anything but smile. We have exchanged thousands of words in this short while, but we haven't uttered one single word. You hug me again.
In the background music starts playing. You instantly start directing the music. You are perfectly timed with they rhythm of the song. You do it as though you were meant to direct the most beautiful music in the world. You continue directing and keeping with the rhythm until the next thing catches your eye and you are off.
I heard someone say that love is about sacrificing and giving someone else what they want, even if it means sacrificing what you really want. It is about focusing on what you have, not regretting, not longing for what you don't have. In these moments this morning, you reminded me of that once again.
You are exactly what I need, and God knew that. Sometimes I have a hard time realizing that. Too often I am caught up more in what I want and what I thought that should have been. It is sad because I miss these simple moments, I miss what was given to me, what I should be focusing on. When I spend too long in that state of regret, longing, that place of discontentment, it robs me of everything that you are and every blessing that was meant for my life.
I would ever change you, but when the moments are hard, when the months are long; I find myself wishing, dreaming of more of something else. Those moments of comparing take my eyes off of these moments. That discontentment robs me of the simple moments of love. It takes me to a place that I should not be and miss what I do have.
I realize this journey is hard, it is long but when I am not present where God has placed me, I miss out on so many blessings. This morning was a great reminder of the simple joy that you bring. The simple joy that we all miss because we are not content or we are busy comparing what that person has and trying to achieve something that is not meant for our life. If we want to find true and pure love it is focusing on what we do have and not longing for something we don't have.
In that moment, I found that I have a fortune. You told me so in our conversation this morning when we exchanged stares.
Tuesday, May 5, 2015
Chickens N Down Syndrome
For many of you, who know about my recent obsession; this title should come as no surprise. To you that don't know, a month or so ago we purchased chickens. And since then, it has become an obsession. We are up to almost 50 chickens. It is very addicting and so much fun!
One day I was out in the coop and I was shoveling the poop into the bucket. A smile came across my face and I felt extremely happy. I was brought back to a place, when I was younger, playing on the farm. Many summers I spent extended time with my grandparents and my cousin and I would get into a lot of trouble on the farm. I remember that I was happy when I was outside working, doing physical labor.
But, farming, I was told, did not provide a living. Farming was hard work, lots of hours, and often little benefits. But I was happy with who I was when I was out in the field, when I was milking the cows, when I was covered in head to toe with poop and smelled. I felt as though I was accomplishing something. I felt like I had a purpose.
As the years passed, the farm was farther and farther from my world. Once married, we moved to a city. I hated it. I hated that when I ate breakfast I could see our neighbor showering. I hated when I showered I could see our other neighbors. I felt suffocated and was not happy. My husband was not either. After just a couple of years, we found ourselves ready to move out of the city into the country.
While we did not get the amount of land, the isolation that we originally wanted; we did get a couple of acres a barn and a typical farm house. It was perfect, still some neighbors, relatively close to town, but room to run. The night sky is amazing, the sunsets and sunrises are breath taking and the air smells amazing.
Then kids came. We always seemed to be running and doing this and that. Everything that attracted us to the country seemed like a distant memory. There were very few times we enjoyed that land, it became a burden to mow and take care of. While the girls enjoy being outside it seemed like life was just so busy.
When Lydia came along, our life slowed. Many things were focused on her because of her many medical issues. The older girls kept pressing for an animal. Knowing that I could not properly care for a dog (our house is too small and I am just a little OCD about dog hair), that was not an option. We had a cat that we now have shared custody with our neighbors (long story, but when we stayed at the RMH they cared for him and fell in love with him).
I've always wanted animals to care for. But what? After many discussions, chickens were decided on. We purchased four to start with. Lydia loved them. She has never been keen on dogs and the cats are OK, but the chickens. She could chase and scream with them and she loves collecting the eggs. The other girls love them too.
Soon, like the next day the four chickens grew to nine chickens. Then the nine grew to who knows how many. And in two short months, we have 36 hens, 3 roosters, and 10 chicks. It has been so much fun. It brings us together as a family. We have built the coops together, we have had fun naming the chickens, we sit and laugh as they fight over food. We enjoy selling our eggs, but we also enjoy giving them away as a blessing to others.
As I was shoveling I felt like I had purpose and meaning. I felt like I had been ignoring who I really was (a crazy chicken farmer :)) for too long. It made me question and wonder who I was. It made many days harder because I lost who I was. I lost focus of the simple stuff to chase things that were never meant to be. I allowed outside influences to consume me and ignore who God created me to be.
This is what I love about Lydia, she is who she is. She does not try to pretend to be someone she is not. She is who God created her to be. She is loving and no rules, no colors, no boundaries will stop her. She is silly and she does not hide it. She doesn't pretend, what you see is who she is. She has a smile that draws you in, she has a personality that is unwavering. She does not let outside influences influence who she is. She is determined and nothing will stand in her way. Some may call the stubborn, but I think that is one of her very best qualities!
She slows life down for us and puts into perspective the really important things. As we walk through the store and she wants me to stop 100 times to kiss her, I will. Because that is important than anything else. She takes time to give a hug to that homely-looking person and we all should be more like that. She has a twinkle in her eye that others cannot ignore.
She has a confidence about her that is contagious, if you allow it to be. When you break down the outside influences, the perceptions, and allow the moment to happen, you will be blessed beyond what you think. See, when we are who we are created to be, God has so much more in store for us.
I think the confidence in who she is, is very intimidating to many. It was to me. But now, she has shown me a life that I could have never fathomed before. I am blessed because I have found that confidence that God gives to us. I have found that strength to be exactly as God created me to be. If that is just a big silly chicken farmer, than so be it. I am successful because I am loved beyond words, I am happy and isn't that really what almost everyone is seeking these days.
Until you break down the walls and allow yourself to be who you were created to be, you are chasing something you can never be. Lydia may never be a doctor or a lawyer, but she will be happy and that is all that you can hope for for your children. She has it, the key...she is who she is and I am blessed. I don't want to stand in her way. For she holds the key that many are searching for. Look out world, you haven't seen anything yet!
Silly chickens that taught me a lesson that I have been looking for. Life just seems so complete when I am shoving that poop into the bucket. When I name our chickens and talk with them and they provide hours of entertainment. When my husband and I feel complete because of our flock of birds, our girls who are happy, and a life that seemed so distant but now seems so full, if that is odd or weird, if that is not "normal" I am OK with that.
Thanks Lydia for once again pushing mom and allowing mom to find that happiness by being me. I don't have to live up to any standards that I feel the world is telling me to be. I don't have to be something that I know I am not. I have to be me, who I was created to be. You are one amazing little girl and I am blessed that God chose me to be your mom!
One day I was out in the coop and I was shoveling the poop into the bucket. A smile came across my face and I felt extremely happy. I was brought back to a place, when I was younger, playing on the farm. Many summers I spent extended time with my grandparents and my cousin and I would get into a lot of trouble on the farm. I remember that I was happy when I was outside working, doing physical labor.
But, farming, I was told, did not provide a living. Farming was hard work, lots of hours, and often little benefits. But I was happy with who I was when I was out in the field, when I was milking the cows, when I was covered in head to toe with poop and smelled. I felt as though I was accomplishing something. I felt like I had a purpose.
As the years passed, the farm was farther and farther from my world. Once married, we moved to a city. I hated it. I hated that when I ate breakfast I could see our neighbor showering. I hated when I showered I could see our other neighbors. I felt suffocated and was not happy. My husband was not either. After just a couple of years, we found ourselves ready to move out of the city into the country.
While we did not get the amount of land, the isolation that we originally wanted; we did get a couple of acres a barn and a typical farm house. It was perfect, still some neighbors, relatively close to town, but room to run. The night sky is amazing, the sunsets and sunrises are breath taking and the air smells amazing.
Then kids came. We always seemed to be running and doing this and that. Everything that attracted us to the country seemed like a distant memory. There were very few times we enjoyed that land, it became a burden to mow and take care of. While the girls enjoy being outside it seemed like life was just so busy.
When Lydia came along, our life slowed. Many things were focused on her because of her many medical issues. The older girls kept pressing for an animal. Knowing that I could not properly care for a dog (our house is too small and I am just a little OCD about dog hair), that was not an option. We had a cat that we now have shared custody with our neighbors (long story, but when we stayed at the RMH they cared for him and fell in love with him).
I've always wanted animals to care for. But what? After many discussions, chickens were decided on. We purchased four to start with. Lydia loved them. She has never been keen on dogs and the cats are OK, but the chickens. She could chase and scream with them and she loves collecting the eggs. The other girls love them too.
Soon, like the next day the four chickens grew to nine chickens. Then the nine grew to who knows how many. And in two short months, we have 36 hens, 3 roosters, and 10 chicks. It has been so much fun. It brings us together as a family. We have built the coops together, we have had fun naming the chickens, we sit and laugh as they fight over food. We enjoy selling our eggs, but we also enjoy giving them away as a blessing to others.
As I was shoveling I felt like I had purpose and meaning. I felt like I had been ignoring who I really was (a crazy chicken farmer :)) for too long. It made me question and wonder who I was. It made many days harder because I lost who I was. I lost focus of the simple stuff to chase things that were never meant to be. I allowed outside influences to consume me and ignore who God created me to be.
This is what I love about Lydia, she is who she is. She does not try to pretend to be someone she is not. She is who God created her to be. She is loving and no rules, no colors, no boundaries will stop her. She is silly and she does not hide it. She doesn't pretend, what you see is who she is. She has a smile that draws you in, she has a personality that is unwavering. She does not let outside influences influence who she is. She is determined and nothing will stand in her way. Some may call the stubborn, but I think that is one of her very best qualities!
She slows life down for us and puts into perspective the really important things. As we walk through the store and she wants me to stop 100 times to kiss her, I will. Because that is important than anything else. She takes time to give a hug to that homely-looking person and we all should be more like that. She has a twinkle in her eye that others cannot ignore.
She has a confidence about her that is contagious, if you allow it to be. When you break down the outside influences, the perceptions, and allow the moment to happen, you will be blessed beyond what you think. See, when we are who we are created to be, God has so much more in store for us.
I think the confidence in who she is, is very intimidating to many. It was to me. But now, she has shown me a life that I could have never fathomed before. I am blessed because I have found that confidence that God gives to us. I have found that strength to be exactly as God created me to be. If that is just a big silly chicken farmer, than so be it. I am successful because I am loved beyond words, I am happy and isn't that really what almost everyone is seeking these days.
Until you break down the walls and allow yourself to be who you were created to be, you are chasing something you can never be. Lydia may never be a doctor or a lawyer, but she will be happy and that is all that you can hope for for your children. She has it, the key...she is who she is and I am blessed. I don't want to stand in her way. For she holds the key that many are searching for. Look out world, you haven't seen anything yet!
Silly chickens that taught me a lesson that I have been looking for. Life just seems so complete when I am shoving that poop into the bucket. When I name our chickens and talk with them and they provide hours of entertainment. When my husband and I feel complete because of our flock of birds, our girls who are happy, and a life that seemed so distant but now seems so full, if that is odd or weird, if that is not "normal" I am OK with that.
Thanks Lydia for once again pushing mom and allowing mom to find that happiness by being me. I don't have to live up to any standards that I feel the world is telling me to be. I don't have to be something that I know I am not. I have to be me, who I was created to be. You are one amazing little girl and I am blessed that God chose me to be your mom!
Wednesday, March 25, 2015
The Grass is Greener
I woke up, just like every other morning. Half asleep debating if I really wanted to go on the bike. I untangled myself from my daughter's oxygen cord, just another reminder that I am a parent of a special child. I stumble down the stairs and stub my toe on that huge concentrator that my daughter is hooked up to, providing the oxygen she needs to maintain healthy saturations.
I reluctantly hop on my bike, it has been several weeks since I have rode on it but know I need this. My life has been lived in a hospital room helping my daughter battle RSV. Since home I have tried to catch up on sleep that the hospital stole from me, make up time with my girls that was robbed by another sickness, and try to spend a little time on my marriage. Life has been busy.
I take a deep breathe and turn on the music. I am slow this morning. Many things running through my mind. I drift into a daydream. I dream about other people's lives and what it must be like to live their life. I think how green the grass looks on the other side. If only this, if only that. My daydreams quickly turns to anger and jealousy. Why can't I be like that? Why can't life be that simple for me? I have reminders all over my life of how difficult and isolating it is to raise a child with special needs and many medical complications.
Then I have reminders of how that green grass on the other side of the fence is tainted with their own thistles and weeds. I am reminded of the horrors of other people's lives all around me. The police officer that was just shot yesterday in our community, the family whose mom is battling cancer, the man who is watching his father die because of cancer, the family that is fostering the impossible child, the family who just experienced the tragic loss of a child, the family that battles in silence, the broken marriage. The list can go on and on of what the green grass covers up. What is behind the smile, what is really going on?
As I turned my phone to my daily devotion God gave me Philippians 2:3-5. I needed this. It says: "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus." I needed this today.
A little bit of daydreaming turns into jealousy and anger. None of that is healthy. The truth is, God has written a path for everyone's lives. Some are similar and some are completely different. There are struggles and trials in everyone's lives. I was encouraged to not daydream but to help others. I was encouraged to not wallow where God has me, but to help others in their place. And if I want to have my grass green, I need to put in the time, I need to pull the thistles, and I need to water it, mow it, and take care of it. Daydreaming of someone else's grass will not help mine.
There are reminders all around of the path God has written for me. Some are harder to accept than others. The conversation that I had the other day with my middle child. Mom, can you tell me what retard is. Mom, I don't want to put Lydia down, but I want to know what it means. As we talked and I got that deep burning feeling out, it felt good that I was teaching my child about what the meaning of words are and how she should use them. The word retard really gets to me, to think that Lydia is mentally retarded is really hard for me. She is my daughter, full of life and laughter. Whether she is slow, retarded, has Down syndrome or whatever is pointless because none of them describes who she is. I learned this is part of the pruning of my grass. I need to cut those things out and pull the roots. I need to remember whose child she is, she is the daughter of the King of Kings. I can't allow that word to take seed and root itself deep in my grass.
There are other reminders. The isolation of staying put inside a house all day. The isolation of monitoring a child and helping them navigate their environment while hooked on a tube. As I looked around the parking lot and saw other moms walking their children into school, looking as though there was not a care in this world, I felt that hot anger getting root again. I had to be thankful that I was able to get out of the house (I have not been able to take the kids to school in over a week). I had to be thankful that God has allowed me to provide a safe place for Lydia of healing and restoration. It's not what I want, where I want to be, but I need to continue to prune, mow, and tend to MY grass.
The grass will always look greener on the other side and that is because we have not been there to do the work. It is fun sometimes to admire how beautiful it looks and wish we were there, but that is a very dangerous place to be. Getting a diagnosis of Down syndrome can sometimes feel like that too, unfair and like your entire lawn was just killed. However, when you allow the seed to take over and pull the roots of all of the untrue information and stereotypes, your grass too can become beautiful and green. There is nothing in this life with God's help, that will destroy our lawn. Be happy right where God has planted you. Tend to your grass, mow it, prune it, and put the time in for it to be green and healthy.
I reluctantly hop on my bike, it has been several weeks since I have rode on it but know I need this. My life has been lived in a hospital room helping my daughter battle RSV. Since home I have tried to catch up on sleep that the hospital stole from me, make up time with my girls that was robbed by another sickness, and try to spend a little time on my marriage. Life has been busy.
I take a deep breathe and turn on the music. I am slow this morning. Many things running through my mind. I drift into a daydream. I dream about other people's lives and what it must be like to live their life. I think how green the grass looks on the other side. If only this, if only that. My daydreams quickly turns to anger and jealousy. Why can't I be like that? Why can't life be that simple for me? I have reminders all over my life of how difficult and isolating it is to raise a child with special needs and many medical complications.
Then I have reminders of how that green grass on the other side of the fence is tainted with their own thistles and weeds. I am reminded of the horrors of other people's lives all around me. The police officer that was just shot yesterday in our community, the family whose mom is battling cancer, the man who is watching his father die because of cancer, the family that is fostering the impossible child, the family who just experienced the tragic loss of a child, the family that battles in silence, the broken marriage. The list can go on and on of what the green grass covers up. What is behind the smile, what is really going on?
As I turned my phone to my daily devotion God gave me Philippians 2:3-5. I needed this. It says: "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves. Each of you should look not only to your own interests, but also to the interests of others. Your attitude should be the same as that of Christ Jesus." I needed this today.
A little bit of daydreaming turns into jealousy and anger. None of that is healthy. The truth is, God has written a path for everyone's lives. Some are similar and some are completely different. There are struggles and trials in everyone's lives. I was encouraged to not daydream but to help others. I was encouraged to not wallow where God has me, but to help others in their place. And if I want to have my grass green, I need to put in the time, I need to pull the thistles, and I need to water it, mow it, and take care of it. Daydreaming of someone else's grass will not help mine.
There are reminders all around of the path God has written for me. Some are harder to accept than others. The conversation that I had the other day with my middle child. Mom, can you tell me what retard is. Mom, I don't want to put Lydia down, but I want to know what it means. As we talked and I got that deep burning feeling out, it felt good that I was teaching my child about what the meaning of words are and how she should use them. The word retard really gets to me, to think that Lydia is mentally retarded is really hard for me. She is my daughter, full of life and laughter. Whether she is slow, retarded, has Down syndrome or whatever is pointless because none of them describes who she is. I learned this is part of the pruning of my grass. I need to cut those things out and pull the roots. I need to remember whose child she is, she is the daughter of the King of Kings. I can't allow that word to take seed and root itself deep in my grass.
There are other reminders. The isolation of staying put inside a house all day. The isolation of monitoring a child and helping them navigate their environment while hooked on a tube. As I looked around the parking lot and saw other moms walking their children into school, looking as though there was not a care in this world, I felt that hot anger getting root again. I had to be thankful that I was able to get out of the house (I have not been able to take the kids to school in over a week). I had to be thankful that God has allowed me to provide a safe place for Lydia of healing and restoration. It's not what I want, where I want to be, but I need to continue to prune, mow, and tend to MY grass.
The grass will always look greener on the other side and that is because we have not been there to do the work. It is fun sometimes to admire how beautiful it looks and wish we were there, but that is a very dangerous place to be. Getting a diagnosis of Down syndrome can sometimes feel like that too, unfair and like your entire lawn was just killed. However, when you allow the seed to take over and pull the roots of all of the untrue information and stereotypes, your grass too can become beautiful and green. There is nothing in this life with God's help, that will destroy our lawn. Be happy right where God has planted you. Tend to your grass, mow it, prune it, and put the time in for it to be green and healthy.
Thursday, March 12, 2015
Connecting Pieces
A couple of weekends ago I attended a workshop that was put on by our local Down Syndrome group (DSAW-Fox Cities). They brought in a presenter named Alice Belgrade. The title of the workshop was from defiance to compliance. I knew that I needed some of this with Lydia. It was a great workshop and I had a lot of fun being away from the kids with a good friend!
I know that parenting a child with special needs, specifically with many medical challenges, is different than my other kids. However, I have not been able to put my finger exactly on what is different. But there are many times my husband and I just shake our head and we are at a loss of what to do next.
One of the major take aways that I had from this day long conference was about the environment Lydia has. I work so hard on making it safe, and getting the toys that are accurate for her ability, and making sure that I work with her on her skills and what she is doing in therapy. However, I have been missing two huge key parts. One is "Is the environment functional for her?" Two is "She likes to have fun and is her environment fun?" No and no were my answers.
I remember with Ellen and Allison I enjoyed baking with them (we still make many memories cooking together). I remember that Ellen was great at pouring and really struggled with cracking eggs. I had to either pre-crack the eggs or have her sister do that. Allison was just the opposite in that she was great at cracking eggs but really struggled to pour. I had to either pour for her or pour the liquid into a smaller container so she could pour. I did this so they would have success and they could take pride in helping me bake. No where ever did it enter my mind that Ellen is three and she should be cracking an egg. No where ever did it enter my mind that Allison is two and she should be able to pour. Their environments were set up so both of them could feel success at their individual ability.
They are no different than Lydia. I need to create an environment where Lydia can be successful and she can complete tasks on her ability. I should not think that because she is three, she should be doing this. No, I should look at her abilities and create the environment to fit her abilities.
Sounds really simple, right? Yep, I agree too. But I have struggled with this. As I have thought and wondered why this was so difficult to me, I had to admit something that is really hard for me to. I had to admit that maybe, somewhere in my mind, I believed the negativity that was told to me at the beginning. Maybe I didn't really believe that she could do it because she has Down syndrome. Maybe I was passing her off and not giving her the opportunity that she needed. That sounds horrible. But I am slowly connecting those pieces.
I remember sitting at one of Lydia's very first IEP meetings. We wanted to set a goal of her being able to button and unbutton. Her OT said that was probably too high level and they would not expect Lydia to be doing that yet. Eric, my husband, firmly said that we want to keep pushing Lydia and allow her to tell us when too much is too much. We don't want to predetermine what she can do or cannot do. That is important to both Eric and myself, but I get caught in all of the negatives. I see the tests that say she is so far behind and this small, yet very powerful voice says she will be nothing. I get confused and I struggle with that.
Lydia deserves an environment where she can experience more success than failure. It is not based on age or disability or the color of her eyes. It is based on what Lydia can do and where Lydia is at. It's putting extra step stools in the kitchen so she can reach the plates, because she is capable. It is helping her to get the lid started on the water bottle so she can finish it and experience the same success as her sisters. It is taking my time to help her to hang her jacket on a hanger. It is that extra three minutes that I get frustrated with. But it is about helping her experience success and not failures.
I also forget how much she loves people. I forget that she loves to have fun and be a goofball. This motivates her, this helps her to want to do more when it is in a fun environment. Seems so simple again, yet I couldn't put those pieces together until now. Instead of thinking about it as playing games when she is eating, I think of it as creating a fun environment so she can be successful. It is hard sometimes because what I think should happen, doesn't. But it doesn't happen the way I think it should either. So really, if we are able to motivate her by allowing her to have fun, we have a win. No matter what I think!
It is hard to admit that I probably have been a huge stumbling block in a lot her learning because I could not simply let down my wants and do what is really best for her. I forgot to create an environment for her where she can excel. I did so well with my other girls, what happened? I think that I got so wrapped up in trying to create awareness, trying to manage medical issues, and trying to prove to someone (I am not sure who that would be) that she is worth something. She is worth everything simply because she is my daughter. It does not matter what others think and I need to remember that.
When we cooked the other day, Lydia was able to pull the butter from the paper, she was able to turn the cap to the vanilla, and lower the mixer and lock it into place. She was able to laugh and play with her sisters. I created three separate environments for each child, one where they could learn, be challenged and still experience success.
I think after writing my last blog post, I was able to easily connect the pieces. Awareness, to me, is not about proving Lydia's worth. It is about showing what she is capable of doing right where she is at. It is about changing who I am to be the very best mother and advocate for her (and this goes with my other girls as well). I think it is about changing attitudes towards Lydia. She is not less of a person because Downy syndrome. She may be different, but I am completely different from my sisters too!
I am glad that God has allowed me to connect these pieces. Things that seem to be right in front of me, but I was completely missing them. Creating an environment where she can feel successful is my ultimate goal. And it does not matter what she should be doing at what age, it is about her ability today! I have nothing to prove to anyone but share my sweet little girl with everyone!
I know that parenting a child with special needs, specifically with many medical challenges, is different than my other kids. However, I have not been able to put my finger exactly on what is different. But there are many times my husband and I just shake our head and we are at a loss of what to do next.
One of the major take aways that I had from this day long conference was about the environment Lydia has. I work so hard on making it safe, and getting the toys that are accurate for her ability, and making sure that I work with her on her skills and what she is doing in therapy. However, I have been missing two huge key parts. One is "Is the environment functional for her?" Two is "She likes to have fun and is her environment fun?" No and no were my answers.
I remember with Ellen and Allison I enjoyed baking with them (we still make many memories cooking together). I remember that Ellen was great at pouring and really struggled with cracking eggs. I had to either pre-crack the eggs or have her sister do that. Allison was just the opposite in that she was great at cracking eggs but really struggled to pour. I had to either pour for her or pour the liquid into a smaller container so she could pour. I did this so they would have success and they could take pride in helping me bake. No where ever did it enter my mind that Ellen is three and she should be cracking an egg. No where ever did it enter my mind that Allison is two and she should be able to pour. Their environments were set up so both of them could feel success at their individual ability.
They are no different than Lydia. I need to create an environment where Lydia can be successful and she can complete tasks on her ability. I should not think that because she is three, she should be doing this. No, I should look at her abilities and create the environment to fit her abilities.
Sounds really simple, right? Yep, I agree too. But I have struggled with this. As I have thought and wondered why this was so difficult to me, I had to admit something that is really hard for me to. I had to admit that maybe, somewhere in my mind, I believed the negativity that was told to me at the beginning. Maybe I didn't really believe that she could do it because she has Down syndrome. Maybe I was passing her off and not giving her the opportunity that she needed. That sounds horrible. But I am slowly connecting those pieces.
I remember sitting at one of Lydia's very first IEP meetings. We wanted to set a goal of her being able to button and unbutton. Her OT said that was probably too high level and they would not expect Lydia to be doing that yet. Eric, my husband, firmly said that we want to keep pushing Lydia and allow her to tell us when too much is too much. We don't want to predetermine what she can do or cannot do. That is important to both Eric and myself, but I get caught in all of the negatives. I see the tests that say she is so far behind and this small, yet very powerful voice says she will be nothing. I get confused and I struggle with that.
Lydia deserves an environment where she can experience more success than failure. It is not based on age or disability or the color of her eyes. It is based on what Lydia can do and where Lydia is at. It's putting extra step stools in the kitchen so she can reach the plates, because she is capable. It is helping her to get the lid started on the water bottle so she can finish it and experience the same success as her sisters. It is taking my time to help her to hang her jacket on a hanger. It is that extra three minutes that I get frustrated with. But it is about helping her experience success and not failures.
I also forget how much she loves people. I forget that she loves to have fun and be a goofball. This motivates her, this helps her to want to do more when it is in a fun environment. Seems so simple again, yet I couldn't put those pieces together until now. Instead of thinking about it as playing games when she is eating, I think of it as creating a fun environment so she can be successful. It is hard sometimes because what I think should happen, doesn't. But it doesn't happen the way I think it should either. So really, if we are able to motivate her by allowing her to have fun, we have a win. No matter what I think!
It is hard to admit that I probably have been a huge stumbling block in a lot her learning because I could not simply let down my wants and do what is really best for her. I forgot to create an environment for her where she can excel. I did so well with my other girls, what happened? I think that I got so wrapped up in trying to create awareness, trying to manage medical issues, and trying to prove to someone (I am not sure who that would be) that she is worth something. She is worth everything simply because she is my daughter. It does not matter what others think and I need to remember that.
When we cooked the other day, Lydia was able to pull the butter from the paper, she was able to turn the cap to the vanilla, and lower the mixer and lock it into place. She was able to laugh and play with her sisters. I created three separate environments for each child, one where they could learn, be challenged and still experience success.
I think after writing my last blog post, I was able to easily connect the pieces. Awareness, to me, is not about proving Lydia's worth. It is about showing what she is capable of doing right where she is at. It is about changing who I am to be the very best mother and advocate for her (and this goes with my other girls as well). I think it is about changing attitudes towards Lydia. She is not less of a person because Downy syndrome. She may be different, but I am completely different from my sisters too!
I am glad that God has allowed me to connect these pieces. Things that seem to be right in front of me, but I was completely missing them. Creating an environment where she can feel successful is my ultimate goal. And it does not matter what she should be doing at what age, it is about her ability today! I have nothing to prove to anyone but share my sweet little girl with everyone!
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