I don't think anything I post tonight is gonna matter after y'all read Joshua's words, which I am sharing in this post.
BUT, this is what I posted tonight on my Facebook:
I don't think I can adequately express my appreciation to the awesome teachers we've had on this journey. After a rocky start at one school, we moved to another school in town. We walked into that first meeting feeling beaten-down and discouraged...but God had gone before us, and He had prepared the way. We met Mrs. Diane Thomas, and she literally changed all of our lives...for the better...right then and there.
One person, y'all...ONE PERSON.
Never doubt the impact you can have on the lives of others.
Mrs. Thomas was passionate, knowledgeable, creative and empathetic. I cannot tell you how good it felt to have support...at school. Since Joshua's first year of Kindergarten was kind of a hot mess for all involved, we all decided to run him thru Kindergarten again the next year...just so he'd really have the hang of it. I will never forget the day when Mrs. Thomas told me, "I've got the PERFECT teacher for Joshua next year. And she can't wait to have him in her class!" Enter Ms. Rupard. Joshua liked her immediately. She was firm...but she was also fun and gentle and sweet.
As the days went on that year, I slowly began to relax a little. Even when there were issues, Ms. Rupard treated me with respect and understanding, and we worked together to find a solution. ONE PERSON, y'all. ONE teacher...enriched the life of ONE child, and gave hope to ONE discouraged mom. TEACHERS ROCK!
Annnnd...just when I was feeling all warm and fuzzy, remembering some of the good people God placed in our lives during Joshua's first years of school...I got a text from a friend who said, "Joshua's post...amazing."
And, not gonna lie. I thought, "UH OH." Because we never know WHAT he is going to say.
Here are my Joshua's words:
When sometimes I think back on my younger days. I understand how many times. I was probably put down all, for the way I was. From being born with downs. Is something I wanted to have. I accept that. I have downs and I understand that. The Lord has made us according to his purpose. I think back. On my childhood. And I didn't understand why The Lord made me have downs. Because of that. That is why. I cover it up. By teaching myself material arts. Shaolin because it build's how I am. As a person. It has taught me to overcome through kind of insecurities that I have. I like doing martial arts. Because it takes it all I got to give it my best. It help's to clear my head. So I can rise above my insecurities and inadequacies that. I have. With the martial arts. That I do. Makes me a stronger person. And I can focus much better on the spiritual aspects that is main, thing. Because it has developed me into what The Lord want's me to be. I know I can face what challenge that may come my way. As long I make short goals and stick with them. Can make a much better way of life. That I understand that. I must put a way childish things. And focus on being a man. I will not run away. From the things. That has made me the way. I am. To all glory to The Lord. And not me. Because I am second and a alpha male. I will do whatever The Lord want's me to do.
And now we are all cryin' up in herrrrr...
It made me so sad to read his words. We have worked really hard to try and make thing "okay" with Joshua. We haven't focused on him having Down Syndrome. We've celebrated his accomplishments, just like with our other kids. We have tried to show all of them that we are ALL different...and that it's "okay."
We thought we were making it "okay" with Joshua that he has Down Syndrome, and "okay" that he is different and "okay" that he can't do certain things. But then, when he writes stuff like that, I feel like a complete failure...because he is apparently more aware of everything than we all thought.
AND IT IS BREAKING MY HEART.
I know that, as people, we all feel hurt and disappointment and sadness and rejection. I never wanted any of my kids to feel these things, but they have. That's part of life...I know this.
I just never wanted JOSHUA to feel any of these things...but he has. As a mom, I've always wanted to protect my children's hearts...and I know I can't always, and I know I SHOULDN'T always and I haven't always. I have, I think, taught them coping skills...the main one being RUN TO JESUS FIRST, because His ways are always the best ways.
But, I especially wanted to protect the heart of one who is so innocent and pure.
ACK!
I'm dying a little on the inside.
"The Lord is near the brokenhearted; he delivers those who are discouraged." Psalm 34:18
...finding joy in the UPside of DOWN...
Monday, October 5, 2015
Sunday, October 4, 2015
On Saying the Wrong Thing
Tonight, I am recycling some of a post I wrote in 2013.
I have been sharing, on my Facebook, some of our thoughts and experiences on Down Syndrome Acceptance/Awareness Month.
Or, as I like to say, "The Month of Joshua's People."
My post yesterday was not to beat down on the church-lady who made the unkind comment to me. She was a sad lady, who was blunt like that to EVERYONE. Plus, if I was going to point a finger at her, I'd have 3 fingers pointed right back at me. Did your momma teach you that, too?
After I had Joshua, I can't even tell you the comments that came my way. The people who made them were (usually) completely innocent of any malice.
Like the time I was at the store with Joshua, before his heart surgery. He had his surgery at 3 months of age, so if this was before that...he was young. He was very skinny, and his skin was a grayish color...because he was very sick. HENCE THE NEEDED SURGERY. He was so pale, but he had this cute, stickin' up hair and these big, dark eyes. I had dressed him in the cutest outfit. I was clearly smitten with him.
This older lady came up to me, when I was in the check-out line. She looked at Joshua, and said, "he's not right, is he?"
I thought about getting all up in my feels, but honestly...who has the energy for that all the time? Plus, this lady was old-school, I could tell...and she seemed genuinely concerned for Joshua.
If it's my desire to educate others about Down Syndrome, and show off the awesomeness that is Joshua, and it is, I need to be careful in my responses to people. Because I welcome questions...most of us do.
So, I took a deep breath and told her, "no, he is not."
I'd like to say that I have always responded to everyone with grace, but that would not be true. I believe there ARE times to be bold and speak up. Before Joshua's open-heart surgery, I asked for a Resident to be removed from his team. She did not share the same value of LIFE that we had. I found this out when she was questioning me about my pregnancy...did we know about Joshua's diagnosis before birth (no, we did not)?
She said, "that's too bad, because if you had known beforehand, you could've done something about it."
Which, she meant, that we could've done something about HIM.
Oh, no ma'am.
I was sending Joshua back for a very serious surgery, and I had to know that everyone on his team was ON HIS TEAM...that they realized the worth and value of every child...that they would fight for him...that they would do their best by him...and that they would see him as a CHILD, and not as a disability.
It was one of the bravest things I've ever done in my life, because she was a doctor...but I was a mom.
We've also heard some funny comments along the way, too. Like the nursery worker who told me about Joshua, "he's not half bad!" Jim and I got tickled over it, and wondered which half she was talking about!
Another lady said that if Joshua had Down Syndrome, he must just have a "touch of it."
Somewhere along the way, God reminded me of GRACE...and gave me this mantra: MOST PEOPLE MEAN WELL.
They really do. Show them GRACE. Try to relax. They are trying to reach out to you in their own way. They just get nervous in the face of tragedy or loss, or things they don't know about...and they'll say the wrong thing, when all they really want to do is to make things better. If you snap back at them, you may lose an opportunity to show God's love to them...or to accept God's love FROM them.
Sometimes, I'm the one who says the wrong thing at the wrong time, because I'm just trying to help...and I hope they get that message, even if I bungle up the words.
And I hope they know that I mean well.
"I will give thanks to You for I am fearfully and wonderfully made..." Psalm 139:14
I have been sharing, on my Facebook, some of our thoughts and experiences on Down Syndrome Acceptance/Awareness Month.
Or, as I like to say, "The Month of Joshua's People."
My post yesterday was not to beat down on the church-lady who made the unkind comment to me. She was a sad lady, who was blunt like that to EVERYONE. Plus, if I was going to point a finger at her, I'd have 3 fingers pointed right back at me. Did your momma teach you that, too?
After I had Joshua, I can't even tell you the comments that came my way. The people who made them were (usually) completely innocent of any malice.
Like the time I was at the store with Joshua, before his heart surgery. He had his surgery at 3 months of age, so if this was before that...he was young. He was very skinny, and his skin was a grayish color...because he was very sick. HENCE THE NEEDED SURGERY. He was so pale, but he had this cute, stickin' up hair and these big, dark eyes. I had dressed him in the cutest outfit. I was clearly smitten with him.
This older lady came up to me, when I was in the check-out line. She looked at Joshua, and said, "he's not right, is he?"
I thought about getting all up in my feels, but honestly...who has the energy for that all the time? Plus, this lady was old-school, I could tell...and she seemed genuinely concerned for Joshua.
If it's my desire to educate others about Down Syndrome, and show off the awesomeness that is Joshua, and it is, I need to be careful in my responses to people. Because I welcome questions...most of us do.
So, I took a deep breath and told her, "no, he is not."
I'd like to say that I have always responded to everyone with grace, but that would not be true. I believe there ARE times to be bold and speak up. Before Joshua's open-heart surgery, I asked for a Resident to be removed from his team. She did not share the same value of LIFE that we had. I found this out when she was questioning me about my pregnancy...did we know about Joshua's diagnosis before birth (no, we did not)?
She said, "that's too bad, because if you had known beforehand, you could've done something about it."
Which, she meant, that we could've done something about HIM.
Oh, no ma'am.
I was sending Joshua back for a very serious surgery, and I had to know that everyone on his team was ON HIS TEAM...that they realized the worth and value of every child...that they would fight for him...that they would do their best by him...and that they would see him as a CHILD, and not as a disability.
It was one of the bravest things I've ever done in my life, because she was a doctor...but I was a mom.
We've also heard some funny comments along the way, too. Like the nursery worker who told me about Joshua, "he's not half bad!" Jim and I got tickled over it, and wondered which half she was talking about!
Another lady said that if Joshua had Down Syndrome, he must just have a "touch of it."
Somewhere along the way, God reminded me of GRACE...and gave me this mantra: MOST PEOPLE MEAN WELL.
They really do. Show them GRACE. Try to relax. They are trying to reach out to you in their own way. They just get nervous in the face of tragedy or loss, or things they don't know about...and they'll say the wrong thing, when all they really want to do is to make things better. If you snap back at them, you may lose an opportunity to show God's love to them...or to accept God's love FROM them.
Sometimes, I'm the one who says the wrong thing at the wrong time, because I'm just trying to help...and I hope they get that message, even if I bungle up the words.
And I hope they know that I mean well.
"I will give thanks to You for I am fearfully and wonderfully made..." Psalm 139:14
Saturday, October 3, 2015
Speak Life
Sometimes, we see people when we're out-and-about, and we might be tempted to think, "why can't they control their child?"
Maybe you've thought that same thing, too
And while there are a few who just don't care, I believe that most are doing the best they can. And, we don't know, but they may be walking a road in their lives, or with their child...that we can't even imagine. They may have had words spoken to them that made them want to give up. And so we should maybe respond with grace.
No, we should DEFINITELY respond with grace.
Because that whole "sticks and stones" thing? It was wrong. Words can speak life...or words can hurt.
I've written about this before, but over 20 years ago, Joshua sang with his peers in a Christmas program at our church. He was so happy and he knew all the words. He may have been a tad off-beat, and he may have sung a tad off-key, and he may have not stood as still as a statue while he sang...BUT IT WAS CHURCH...and IT WAS CHRISTMAS...and COME ON, PEOPLE.
As cute as he was, and as proud of him as we were, the thing I remember most from that day is the woman who grabbed me after the performance and said, LOUDLY, "I hope you know your son ruined my video."
You see, Joshua was standing next to her daughter...and this mom had apparently been fuming the entire program about Joshua's performance.
There, in the one place where we teach "Jesus loves the little children of the world," where all children should find unconditional love, and all parents should receive support and encouragement, I heard...unwanted...unloved...unaccepted.
And as a Mom who sometimes felt a little down (no pun intended!) with all the therapies, IEPs, and wonderfing if we were doing any of this "right," her words weighed like a heaviness on my heart.
Since when is a video more important than a person...than a life?
We had many, many friends who loved and encouraged our family in this town our big kids call "home," and we never would've made it without them. But this one lady, and her hurtful words, have stayed with me all these years.
Speak life.
"...Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me." Matthew 25:40
Maybe you've thought that same thing, too
And while there are a few who just don't care, I believe that most are doing the best they can. And, we don't know, but they may be walking a road in their lives, or with their child...that we can't even imagine. They may have had words spoken to them that made them want to give up. And so we should maybe respond with grace.
No, we should DEFINITELY respond with grace.
Because that whole "sticks and stones" thing? It was wrong. Words can speak life...or words can hurt.
I've written about this before, but over 20 years ago, Joshua sang with his peers in a Christmas program at our church. He was so happy and he knew all the words. He may have been a tad off-beat, and he may have sung a tad off-key, and he may have not stood as still as a statue while he sang...BUT IT WAS CHURCH...and IT WAS CHRISTMAS...and COME ON, PEOPLE.
As cute as he was, and as proud of him as we were, the thing I remember most from that day is the woman who grabbed me after the performance and said, LOUDLY, "I hope you know your son ruined my video."
You see, Joshua was standing next to her daughter...and this mom had apparently been fuming the entire program about Joshua's performance.
There, in the one place where we teach "Jesus loves the little children of the world," where all children should find unconditional love, and all parents should receive support and encouragement, I heard...unwanted...unloved...unaccepted.
And as a Mom who sometimes felt a little down (no pun intended!) with all the therapies, IEPs, and wonderfing if we were doing any of this "right," her words weighed like a heaviness on my heart.
Since when is a video more important than a person...than a life?
We had many, many friends who loved and encouraged our family in this town our big kids call "home," and we never would've made it without them. But this one lady, and her hurtful words, have stayed with me all these years.
Speak life.
"...Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me." Matthew 25:40
Friday, October 2, 2015
Just Love Him
This post is kind of gonna be a repeat of some I've written before, but I think I'm going to try and write a post that relates to Joshua and Down Syndrome and our lives with him/it...every day during the month of October for DS Awareness/Acceptance Month.
Or, like I said, "The Month of Joshua's People."
I don't know how this will all work on Facebook. It used to be that I could write whatever I wanted about him, and it was fine...but then he got Facebook.
So then, I would write some things on IG...but then he got IG. THANK YOU, HOLLY.
No, really, social media gives Joshua so much joy, for the most part. But, it keeps the rest of us on our toes, because you just never know what he's going to say.
So, I've taken to using hashtags to say what I want to say on Facebook. I know you're not supposed to use hashtags on Facebook. If you are using hashtags on Facebook, then you probably don't have older kids telling you, "MOM. STOP."
And also saying things like, "I don't use Facebook anymore. It's no fun now that the OLD PEOPLE have taken over."
(sigh)
Anyway, I've been using hashtags because I don't think Joshua has figured them out yet. I mean, just last month, he posted something on Facebook and said it was the "hash-tag-high-light of his whole day." And he wrote it out just like that.
Today, I wrote about Joshua's birth. How I had to have an emergency c-section, and so I was put-to-sleep. I not only missed Joshua's birth...I missed when the doctor told us that Joshua had Down Syndrome. Actually, he said something about Joshua being a "mongoloid."
I know.
Everything was hazy as I was waking up...I remember hushed voices and people all around, and my friend, Carolyn, kissing me on the head. I instinctively knew something was wrong, and kept fighting to wake up. When Jim finally told me, I still didn't understand. I've written before about how I knew NOTHING about Down Syndrome. AT ALL. And, honestly, I didn't care. I was just so thrilled to be a mom.
Jim had the task of calling everyone to tell them we'd had the baby...and that he had Down Syndrome. I sat in the bed and cried. Not because I was sad about Joshua...because I didn't have enough sense, or mental function at the time, to figure out what all it meant. Thank you, anesthesia. It was just listening to Jim tell everyone. It was really hard. Not as hard as what Jim had to do...but I knew that whatever we had to face, we'd do it together.
And when they brought Joshua to me, I would just stare at him. There couldn't be anything "wrong" with him. What did they see? I thought he was beautiful.
I heard Jim on the phone with our friends, Billy and Sherri. Jim was saying, "don't come...we're fine." It seemed like just a minute had passed when they came walking through my door. Because OF COURSE they came. That's what friends do...they show up. Even when it's hard.
It was a blessing that Joshua was born first. We had no clue about parenting, and no clue about Down Syndrome...so I think that made for a good combination. We were pretty much smitten with him. I mean, cutest baby ever.
When we got home from the hospital, our friend, Karen Alexander (Doyel), came by to see us. Her first husband, Doug, was a minister at our church. After several days of information and testing and doctor's appointments and no sleep, my head was about to explode. Karen was holding Joshua on her lap...I can see it in my mind like it was yesterday. In the midst of all the noise of what we should/should not be doing, her quiet words were like a balm for my heart: "JUST.LOVE.HIM."
Well, I can do that!
"Whatever is good and perfect is a gift coming down to us from God our Father..." James 1:17
Or, like I said, "The Month of Joshua's People."
I don't know how this will all work on Facebook. It used to be that I could write whatever I wanted about him, and it was fine...but then he got Facebook.
So then, I would write some things on IG...but then he got IG. THANK YOU, HOLLY.
No, really, social media gives Joshua so much joy, for the most part. But, it keeps the rest of us on our toes, because you just never know what he's going to say.
So, I've taken to using hashtags to say what I want to say on Facebook. I know you're not supposed to use hashtags on Facebook. If you are using hashtags on Facebook, then you probably don't have older kids telling you, "MOM. STOP."
And also saying things like, "I don't use Facebook anymore. It's no fun now that the OLD PEOPLE have taken over."
(sigh)
Anyway, I've been using hashtags because I don't think Joshua has figured them out yet. I mean, just last month, he posted something on Facebook and said it was the "hash-tag-high-light of his whole day." And he wrote it out just like that.
Today, I wrote about Joshua's birth. How I had to have an emergency c-section, and so I was put-to-sleep. I not only missed Joshua's birth...I missed when the doctor told us that Joshua had Down Syndrome. Actually, he said something about Joshua being a "mongoloid."
I know.
Everything was hazy as I was waking up...I remember hushed voices and people all around, and my friend, Carolyn, kissing me on the head. I instinctively knew something was wrong, and kept fighting to wake up. When Jim finally told me, I still didn't understand. I've written before about how I knew NOTHING about Down Syndrome. AT ALL. And, honestly, I didn't care. I was just so thrilled to be a mom.
Jim had the task of calling everyone to tell them we'd had the baby...and that he had Down Syndrome. I sat in the bed and cried. Not because I was sad about Joshua...because I didn't have enough sense, or mental function at the time, to figure out what all it meant. Thank you, anesthesia. It was just listening to Jim tell everyone. It was really hard. Not as hard as what Jim had to do...but I knew that whatever we had to face, we'd do it together.
And when they brought Joshua to me, I would just stare at him. There couldn't be anything "wrong" with him. What did they see? I thought he was beautiful.
I heard Jim on the phone with our friends, Billy and Sherri. Jim was saying, "don't come...we're fine." It seemed like just a minute had passed when they came walking through my door. Because OF COURSE they came. That's what friends do...they show up. Even when it's hard.
It was a blessing that Joshua was born first. We had no clue about parenting, and no clue about Down Syndrome...so I think that made for a good combination. We were pretty much smitten with him. I mean, cutest baby ever.
When we got home from the hospital, our friend, Karen Alexander (Doyel), came by to see us. Her first husband, Doug, was a minister at our church. After several days of information and testing and doctor's appointments and no sleep, my head was about to explode. Karen was holding Joshua on her lap...I can see it in my mind like it was yesterday. In the midst of all the noise of what we should/should not be doing, her quiet words were like a balm for my heart: "JUST.LOVE.HIM."
Well, I can do that!
"Whatever is good and perfect is a gift coming down to us from God our Father..." James 1:17
Thursday, October 1, 2015
October: The Month of Joshua's People
Joshua had a good day today at his Therapeutic Recreation. They went to fitness first thing, which Joshua LOVES...and then they came back to their Center for lunch. The City is having a big fishing derby out there on Saturday, and so they did quite a bit of cleaning up to get ready for that.
I went to lunch with my friend, Amy, and we had a great time catching up...she had just gotten back from a 16 day trip to Europe.
Every day, I try to post a picture of Joshua on my Facebook. I don't do it every day, but I try. Since Joshua's nickname is "Fred," I call these posts, "Our Daily Fred."
I decided to share part of that post here on the blog:
October is mostly known for pink, and breast cancer, and when we are the most intentional about checking ourselves and encouraging others who are fighting this awful disease.
October is also Down Syndrome Awareness month. Or, as we like to call it around here: "The Month of Joshua's People..." where we maybe slowww dowwwn, and look around for the beauty in the little things, and we celebrate how God made us all different and unique.
I post "Our Daily Fred" for several reasons:
*I hope that sharing our lives with Joshua brings glory to God, because He has blessed us far and above what we deserve.
*I hope it maybe encourages others in some small way.
*It lets our out-of-town family an friends keep up with him.
*And, finally, I hope it raises awareness of the fact that we are all #morealikethandifferent.
Y'all, life is hard for many people, and sometimes we make it even harder for them when we make judgments based on our own preconceived ideas, or because of how they look or talk or walk.
Could we maybe #changethefaceofbeauty by looking at people in a different way? Could we maybe see others through the eyes of Christ?
Because, seriously...look at the face of my child...or your child...or a child that you know. And then look past that face...to see a person who has a heart and a soul and dreams...a person who was fearfully and wonderfully made by a wise and compassionate Father.
"...God does not view things the way men do. People look on the outward appearance, but the Lord looks at the heart." 1 Samuel 16:7
I went to lunch with my friend, Amy, and we had a great time catching up...she had just gotten back from a 16 day trip to Europe.
Every day, I try to post a picture of Joshua on my Facebook. I don't do it every day, but I try. Since Joshua's nickname is "Fred," I call these posts, "Our Daily Fred."
I decided to share part of that post here on the blog:
October is mostly known for pink, and breast cancer, and when we are the most intentional about checking ourselves and encouraging others who are fighting this awful disease.
October is also Down Syndrome Awareness month. Or, as we like to call it around here: "The Month of Joshua's People..." where we maybe slowww dowwwn, and look around for the beauty in the little things, and we celebrate how God made us all different and unique.
I post "Our Daily Fred" for several reasons:
*I hope that sharing our lives with Joshua brings glory to God, because He has blessed us far and above what we deserve.
*I hope it maybe encourages others in some small way.
*It lets our out-of-town family an friends keep up with him.
*And, finally, I hope it raises awareness of the fact that we are all #morealikethandifferent.
Y'all, life is hard for many people, and sometimes we make it even harder for them when we make judgments based on our own preconceived ideas, or because of how they look or talk or walk.
Could we maybe #changethefaceofbeauty by looking at people in a different way? Could we maybe see others through the eyes of Christ?
Because, seriously...look at the face of my child...or your child...or a child that you know. And then look past that face...to see a person who has a heart and a soul and dreams...a person who was fearfully and wonderfully made by a wise and compassionate Father.
"...God does not view things the way men do. People look on the outward appearance, but the Lord looks at the heart." 1 Samuel 16:7
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