You find out you are pregnant. You begin planning. You plan not only how the nursery will look, what outfit they will wear home from the hospital, you also have an image of how it will all go in your mind. You probably even let your mind drift off to the future, what they may become, what they may look like. It seems like a logical way of thinking.
And Then
You get a diagnosis of Down syndrome. Now what? That logical way of thinking becomes a distant memory. You fret and you research and you torment yourself. You think about what could I have done differently. You wonder if your child will ever live up to that expectation you had planned in your head. You grieve the loss of this child you thought you would have and look to the future in fear.
And Then
Your baby is born. Your new love is placed in your arms and everything seems so right. She is just
like any other baby. She has a cute button nose, she squirms and coos and sucks a little. Her beautiful almond shaped eyes complete this masterpiece that you are holding. Any fears or insecurities melt away. You are completely in love with your child, the one you fretted about, the one you questioned. The one that seemed to stir so much controversy over an extra chromosome. Perfect. Love. Cuddles. Life is good.
As you continue to walk your journey there are different things that come up. Her peers are all starting to roll, sit up, crawl, walk. Your precious baby seems to be so far behind.
And Then
You realize that it doesn't really matter. You realize that it is okay to slow down and enjoy the moment. You don't have to baby proof the house just let, you get to enjoy that baby stage just a little longer. After all, everyone says they grow up too fast and you have been given the precious gift of extra time. While your baby maybe needs a little extra help to accomplish some of these "common" tasks, you begin to learn just what we all take for granted. You understand how all of the muscles have to work together, how motor planning has to happen, and how much strength it takes to roll over.
Your character and understanding starts to build. You start to learn and become a different person. This little gift you were given opens your eyes and changes you. You look at your other kids differently, you parent differently, you look at the world in a whole new way. This fear that seemed to strangle you at the beginning is now turning into the greatest love story ever. You feel like you want to shout from the mountain tops about what a blessing that extra chromosome is. You begin to wonder why there is so much doom and gloom around a Down syndrome diagnosis.
You realize that there are more ways to do things than how you always have been. Communication seems to be the next milestone. While your little one is scooting and just starting to get into things, their peers are running and talking and sassing back to their parents. You start to feel lonely because you seem to think your child is so delayed.
And Then
Your child looks into your eyes and communicates a thousand things with you, in just one look. A look that maybe one of your other children have given to you, but you ignored. Because you don't have the luxury of them sassing back to you, you think out of the box and find a different way. Sing language becomes second nature to you. You break down words to hear every syllable. You call and go on when they utter a sound. You get wrapped up in the excitement of every little step they make. You realize you communicate more with your non-verbal child than you do with your verbal children.
You become an expert in finding other ways, looking outside the box, turning every opportunity into
a learning experience for your child. You find the joy of being an active parent. While it is hard and exhausting. Sometimes lonely and isolating, your child walks up to you and gives you a hug. That low tone allows your child to wrap their entire body around you giving you the hardest most loving hug. And the they pull away for just a second and they smile. Their smile is so big and so bright it melts your heart. You feel like you are going to explode with love.
And Then
Someone says an ignorant comment to you. Someone reminds you what society says about your child. Uneducated and inexperience is talking. The fear, remember the one that you felt before you knew what Down syndrome felt like? The research and the statistics try and the label, try to describe my child, but Down syndrome is not something you describe it is something that must be experienced and felt. Down syndrome has some stereotypes that just aren't true. And what if they are slow or can't keep the pace of a National Honor society student? That means that they have something different,
something that couldn't be measured by a test, but something that must be experienced.
You understand that we all have something different to give. Some give their smarts while others give their smile. Both are important, both have a place. One is not more important than the other, they are just different. One does not have more to offer and one does not have less, just something different.
And Then
You realize just how special the gift of Down syndrome is. Different, yes. Slow, yes. Smart, yes. Beautiful, yes. Stubborn, yes. Capable, yes. Determined, yes. Loving, yes. Emotional, yes.
The journey is filled with many different And Then moments. We work ourselves up, we compare to others, we set false expectations, we sometimes forget that not everyone has the privilege to experience Down syndrome. But often times when we can find the And Then moment we realize we are right where we are suppose to be. Down syndrome is only a label, it does not describe anything and it is an unique as the individual.
Loving Lydibug
Love is a choice not a feeling.
Wednesday, February 24, 2016
Sunday, January 31, 2016
Don't Take That Away
A typical day for me requires me to get up extra early in order to get a couple of minutes for myself. I stumble down the stairs, take a deep breath as I hop on my bike. I usually get about 20 minutes before I hear the pitter patter of tiny feet waking up for the day. Otherwise, I have to watch the time to make sure that my husband gets up in time to leave for work. But for that 20 minutes I prepare myself for whatever may come my way during the day.
I walk up the stairs feeling refreshed and ready to start the day. I usually am greeted at the top of the stairs by tiny eyes, a thumbs up and a request for milk. I swoop her up and turn on the coffee machine. I begin to help my husband get ready for the day as another sleepy set of eyes walk down the stairs. The littlest one is whining that she wants to be rocked. This is a special time for us and I want to make that happen as I want to serve my husband by helping him get ready too.
I sit down in the chair and rock her and rock her. Sometimes we read, sometimes we play the I Pad. Sometimes we just watch the fire and rock. Sometimes she falls back asleep. Sometimes she is sick and just wants mom. The other girl is now awake and she wants to snuggle too. The day has started and mom still feels like she can tackle any problem that may come.
Once we say bye to dad, we have to start our morning routine. Usually, within several minutes, I feel defeated. I struggle to get Lydia to use her shake vest. As soon as I have wrestled her to the ground and I manage to get her locked into her vest, we start treatment. Like clockwork she immediately says she has to go potty. I grumble, but I unhook her and she runs.
I chase. She does not like her vest, she does not like the treatment. She is smart and knows that she can get out of the vest when she says that she has to go potty. I make her go. She fights me. I am trying to keep the other girls on track getting ready for school. I am exhausted. It is only 6:00 AM.
This is just the morning. The day is long and we haven't reached more than two hours of awake time. What else do I have to look forward to today? I get to do another treatment for her, I get to give her medicine, I get to talk to the insurance company, I get to drive her to another doctor's appointment, I get to write more goals for school, I get to complete a packet for continuing her insurance. This is what I get to look forward to for the day.
My mind drifts back to days before Lydia. I was busy with just about everything. I had the schedule to volunteer, meet a friend for lunch, go shopping. I had a chance to do more of what I pleased. I did not have a constant worry on my hands. My life did not seem to change near as much as it does today. My friends and family seemed to understand me better. My relationships seemed to be meaningful and I had more conversations with people and not just medical and insurance folks.
I understand that you may think that you are helping me by not "burdening me" with including me in planning this or volunteering for that, but you really are taking away the one thing that I am looking forward to. I understand that my life seems busy and it seems like I am preoccupied, but I seemed to have buried myself in my child's issues because I have slowly been removed from committees and other opportunities as a way of helping me. I seem to have become isolated because people feel I am too busy. The problem is, no one has asked me.
This is my life. This is my daughter. She has medical issues. She has Down syndrome. Sometimes it is very consuming and sometimes it may interrupt me from completing something I signed up for. But I promise you, these opportunities are very important to me. I promise you that I will give it my all because it will be the one thing that I can look forward to, the one thing that can take my mind off of something other than her medical issues, insurance, and appointments.
I also know that there are ways to do things unconventionally. I mean that instead of having the meeting at school, can we meet at our home. Instead of running errands by myself, can you come with me so I can just run in by myself and you stay in the car with Lydia? Can you come and sit and rock her while I make the phone calls? Will you be able to watch her while I work on something? Would you be willing to let Lydia come with and I will give you all of my time?
If there is one thing that I have learned about raising Lydia, is that there is always a way. We as a society love to do things in a cookie cutter manner. However, she has taught me how to reach outside of that box and to do things in another way. And if you allow yourself to do that, you too will be blessed in a whole new way.
Please don't take that task away from me because you think it is a burden to me. The truth is, that task allows me to feel like I belong somewhere. That task allows me to look forward to something other than what I do every day. That task allows me to push through the routine of each day to know that I get included in something else.
You don't have to understand the path I am walking, you don't have to know what I am going through. But support me as I say I need to do this, I need to volunteer, I need to be involved. Please don't be scared of what I am going through, please don't think these things are a burden. This is my path and I need this. I have realized her health is not going to change so I must adjust to our situation. Please don't take this away from me.
I walk up the stairs feeling refreshed and ready to start the day. I usually am greeted at the top of the stairs by tiny eyes, a thumbs up and a request for milk. I swoop her up and turn on the coffee machine. I begin to help my husband get ready for the day as another sleepy set of eyes walk down the stairs. The littlest one is whining that she wants to be rocked. This is a special time for us and I want to make that happen as I want to serve my husband by helping him get ready too.
I sit down in the chair and rock her and rock her. Sometimes we read, sometimes we play the I Pad. Sometimes we just watch the fire and rock. Sometimes she falls back asleep. Sometimes she is sick and just wants mom. The other girl is now awake and she wants to snuggle too. The day has started and mom still feels like she can tackle any problem that may come.
Once we say bye to dad, we have to start our morning routine. Usually, within several minutes, I feel defeated. I struggle to get Lydia to use her shake vest. As soon as I have wrestled her to the ground and I manage to get her locked into her vest, we start treatment. Like clockwork she immediately says she has to go potty. I grumble, but I unhook her and she runs.
I chase. She does not like her vest, she does not like the treatment. She is smart and knows that she can get out of the vest when she says that she has to go potty. I make her go. She fights me. I am trying to keep the other girls on track getting ready for school. I am exhausted. It is only 6:00 AM.
This is just the morning. The day is long and we haven't reached more than two hours of awake time. What else do I have to look forward to today? I get to do another treatment for her, I get to give her medicine, I get to talk to the insurance company, I get to drive her to another doctor's appointment, I get to write more goals for school, I get to complete a packet for continuing her insurance. This is what I get to look forward to for the day.
My mind drifts back to days before Lydia. I was busy with just about everything. I had the schedule to volunteer, meet a friend for lunch, go shopping. I had a chance to do more of what I pleased. I did not have a constant worry on my hands. My life did not seem to change near as much as it does today. My friends and family seemed to understand me better. My relationships seemed to be meaningful and I had more conversations with people and not just medical and insurance folks.
I understand that you may think that you are helping me by not "burdening me" with including me in planning this or volunteering for that, but you really are taking away the one thing that I am looking forward to. I understand that my life seems busy and it seems like I am preoccupied, but I seemed to have buried myself in my child's issues because I have slowly been removed from committees and other opportunities as a way of helping me. I seem to have become isolated because people feel I am too busy. The problem is, no one has asked me.
This is my life. This is my daughter. She has medical issues. She has Down syndrome. Sometimes it is very consuming and sometimes it may interrupt me from completing something I signed up for. But I promise you, these opportunities are very important to me. I promise you that I will give it my all because it will be the one thing that I can look forward to, the one thing that can take my mind off of something other than her medical issues, insurance, and appointments.
I also know that there are ways to do things unconventionally. I mean that instead of having the meeting at school, can we meet at our home. Instead of running errands by myself, can you come with me so I can just run in by myself and you stay in the car with Lydia? Can you come and sit and rock her while I make the phone calls? Will you be able to watch her while I work on something? Would you be willing to let Lydia come with and I will give you all of my time?
If there is one thing that I have learned about raising Lydia, is that there is always a way. We as a society love to do things in a cookie cutter manner. However, she has taught me how to reach outside of that box and to do things in another way. And if you allow yourself to do that, you too will be blessed in a whole new way.
Please don't take that task away from me because you think it is a burden to me. The truth is, that task allows me to feel like I belong somewhere. That task allows me to look forward to something other than what I do every day. That task allows me to push through the routine of each day to know that I get included in something else.
You don't have to understand the path I am walking, you don't have to know what I am going through. But support me as I say I need to do this, I need to volunteer, I need to be involved. Please don't be scared of what I am going through, please don't think these things are a burden. This is my path and I need this. I have realized her health is not going to change so I must adjust to our situation. Please don't take this away from me.
Monday, December 14, 2015
Thanks for saying that's retarded
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!
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, 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.
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.
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!
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