Monday, October 24, 2016

The Treat Bags of Life

Years ago, after we got home from Clark's very first 9th grade football game, he casually mentioned that he didn't get a "treat bag" that day. I had just spent 3 years helping with the Mom Squad for the Varsity boys, and we made sure every player, manager and coach got a treat bag for every game. 

The kids at the elementary schools would decorate the bags, and then we would fill the bags with peanut butter crackers, granola bars, cookies, candy, roll-ups, etc...things they could have for a quick snack after the game. 

Clark said there were a few others who didn't get a bag that day, but that didn't make it okay with me. He said, "Mom, CHILL...don't make a thing about it." 

Like I would

Enter: Joshua

He had overheard the conversation, and quietly slipped upstairs. Later, he came down with a big grin on his face. He was holding a white lunch bag that he had decorated for Clark. He whispered, "for his next game." Because, y'all...his brother was NOT going without a treat bag. No, ma'am. 

Not on his watch. 

So, for the rest of the season, Joshua would get a lunch bag out of our pantry, and he would go up to his room to decorate it. He started out writing things like, "we love you," or "go for a win." But, as time went on, he got more creative. He'd use quotes from football movies, like, "you blitz all night," "make sure they remember the night they played the Hornets," and "Stonewall defense" (whatever that is). 

There was also our personal favorite, "spank them like a 4 year old at K-Mart."


Later, he'd bring the bag downstairs, I'd fill it with goodies...and we'd "hide" it in Clark's football bag. Every.single.week. Clark always knew it was in there

I love that Joshua loves his brother...both of his brothers, and his sister. He's their biggest fan. 

You know, people throw words around like "burden" and "quality of life" and they have NO IDEA about our lives...of the JOY this brown-eyed man-child has brought to our family...and how much our lives have been BLESSED (yep, I said it) by Down Syndrome, and the community of FRIENDS who support and encourage us on this walk. 

I think that we, our family, have always thought that WE were the ones encouraging Joshua through life...but then he shows up, and encourages us right back. 

You know, we all want a cheerleader in our lives. Someone who will tell us to keep going...who will pray for us, who will hold us up when we think we can't go on...who says, "hang in can do it...I'm here for you." 

Who cheers for you? Who do YOU cheer for? 

I love the "faith" chapter of Hebrews. In Chapter 11, the author lists some men and women of the Bible, who lived out their faith during trying times in their lives. Abel, Enoch, Noah, Abraham...Isaac, Jacob, Moses...Joshua, Rahab, Gideon, David...and more. If you're a Christian, this is your heritage of faith, too! 

I can just picture them standing in Heaven, along with Jesus, God, the angels...and our family and friends who have gone before us...cheering us on. Isn't that awesome? It's like our very own treat bag from God! 

And guess what? 

No one is overlooked! 

"Therefore encourage one another and build up one another." 1 Thessalonians 5:11

Sunday, October 23, 2016

Joshua and the Sticky Notes

Joshua was kind of a little stinker during his elementary school years. He was just trying to learn the "rooahs" (rules).

I think it's Dr. Phil who says that every kid has their own "currency..." that one thing that really matters to them and motivates them to do/not do something...or to work harder; that one thing they would not want taken away.

Joshua's currency was recess.

If he did well in his "regular" class in the morning, then he would get an afternoon recess in his "Special Fred" class. And if he didn't behave well in his regular class, he had to stay inside with the special-ed teacher and do class work.

Which, I totally see the reason and point to this, but you just try containing him all morning...and then keeping him inside all afternoon.

Pick your poison,'re only hurting yourselves!


So, the idea was that his "regular" teacher would use a sticky-note to write whether Joshua behaved well enough to get an afternoon recess, or not, and then Joshua was supposed to take this note to his Special Fred teacher.

Now, Joshua might "just have a touch" of Down Syndrome, but mama didn't raise no fool.

He figured out pretty quickly that 8.5 times out of 10...what was on that note meant he wasn't getting an afternoon recess. So, Joshua took matters into his own hands. On the way to his Special Fred class, he would just stick the notes on the walls, metal poles, trash cans, windows, etc. And I guess they'd just assume that no note meant "good day..." and they would let him go out and play.

This system worked out GREAT for Joshua until one day, his "regular" teacher saw him outside, having a big, ol' time on the playground...when clearly he wasn't supposed to be there. I mean, she had written a note and everything! She took off to have a word with his Special Ed teacher...and, on her way, she found all of the notes! 



We are so thankful for everyone who kept a close eye on Joshua when he was in school, and for everyone who had his best interests at heart.

He's a pretty cool young man, so y'all did a pretty cool job. :)

"Obey your leaders and submit to them, for they keep watch over your souls and will give an account for their work..." Hebrews 13:17

Thursday, October 20, 2016

On Tolerance

People say there is more awareness in our society today, more tolerance for those who are different. 

I hate the word "tolerance." 


Allow me to define the word, "tolerate:" "accept or endure (someone or something unpleasant or disliked) with forbearance (self-control); to put up with, bear, stomach, deal with." 

Tolerate and tolerance are not good words when used for people. Tolerance...tolerating my opinion, should not be something we try to practice in the body of Christ. 

I'm just sayin'...would YOU like feeling that other people have to "stomach" being around you? That they are enduring the time they have to spend with you? Not me. 

Last year, I talked to a mom of a young child who has Down Syndrome. She shared some of the things they are going through with school, and y'all...the school days are just hard days. Or they were for us. Home-work, therapies, doctor appointments, IEPs, teacher conferences and WHY DOES EVERYTHING HAVE TO BE SO HARD? 

It's hard enough already. 

The school work was hard. The social situations were hard. Wondering if we were doing any of it right was hard. Wondering why everything seemed like a fight. Hard. I remember those days...when I would pray all the way to school...and pray during the day, and wonder how things were going...was he safe...was he sad...was he liked...was he keeping up? Was he lonely? Kept me on my knees. 

And, at the end of the day, I would sit in my car and breathe a prayer. I hoped there would be "good notes," and that I would hear positive things. And then I would take a biiiig breath, and walk into his classroom to get the re-cap. 


Because a society...spend a whole lotta time trying to get these kids (and adults) to fit into the molds we have...because that is what we think is best. For them, and for all of us. And maybe it is. Because it seems wrong to let them maybe take a different path...because we want to bring them along with the rest of us, and help them to fit in...with us. 

When maybe they weren't met to fit in. 

Maybe none of us were. 

I don't know. 

Maybe...we should try to fit in...WITH THEM. Hmmmm...think on THAT a while. 

Because Joshua and his friends? They are so precious and unique. They are interesting. They are compassionate, thoughtful and creative. They love big. They are pure in heart...innocent, trusting, and vulnerable. 

I am very thankful for the teachers, therapists and other professionals in Joshua's life, who knew what to do and how to do it. They thought clearly for him, when my mind was clouded by emotion. Most of them did not "tolerate" Joshua, but, instead, loved him, cared for him, respected him, expected the best from him, pushed him, prayed for him, coached him, encouraged him, listened to him, invested in him. I can never thank them enough for their part in making Joshua into the fine, young man he is today. 

Today we are living what I call the Years of Blessing. Joshua is happy. He is healthy. He is caring and kind (usually). He sees the good in others. He speaks his mind no matter who is around to hear it! He is funny! In fact, over the past few years, he has turned into our resident Jay Leno. He is sensitive and insightful. He is excited with the little things. He is wise. 

God has been so gracious to allow us these fun years with Joshua...sandwiched in between the hard times he had in school...and the hard times that are sure to come. 

I love writing about the funny stuff, but there are difficult days, too. You have to know that. I just want people to feel know that Down Syndrome is not a death sentence for your life, your child's life, or for your family. 

It's a different path for sure. Difficult for sure. Uncertain, scary, frustrating, sad...blessed, joyful, rewarding and happy. 

And, guess what? 

All of those same things can be said about parenting our other 3 kids. 

I am so very thankful for this man-child. 

"For this boy I prayed, and He has granted my request. So I have dedicated him to the LORD; as long as he lives he is dedicated to the LORD..." 1 Samuel 1:27-2

Wednesday, October 19, 2016

Building Bridges: We Are All Different

One Sunday, way back in 2013, our former pastor, Bro. Mark, preached a sermon on "Making New Friends..." building bridges between us and people we would normally, for one reason or another, avoid. 

He used the story of the Woman at the Well" (John 4:1-42) as an example. He talked about reaching across racial lines and economic barriers, overcoming fears and stereotypes, being open to learning about other cultures...and reaching out to people who are different from us socially...people who are considered social outcasts. He encouraged us to look at others through the eyes of Jesus. 

His points were that, when the disciples saw a woman...Jesus saw a PERSON; when the disciples saw a Samaritan...Jesus saw a FRIEND; and when the disciples saw an outcast...Jesus saw an EVANGELIST. Bro. Mark talked to us about the people we tend to avoid...because they are different. 

WELL. I was LOVING this message. 

I spent the first part of the sermon climbing up on my high mountain. ALLLLLL up on it. Because being a mom of a son with special needs sometimes clouds (influences) my judgment...and so I was thinking, "all of YOU PEOPLE need to LISTEN UP." I'm with the different and the overlooked every day. I've seen the pointing and staring. I've had people ask me questions that should be addressed to Joshua, like, "would he like a cookie?" Or, "does he need a children's menu?" 

(ummmm...he's 30 years old, sooo...) 


But God...was so kind to help me down from my high place, and hold me tight. He reminded me that He loves Joshua more than I ever can. And that I'm no better than the woman at the well; no better than the ones who judge, stare, ignore and avoid people who are different. 

Because what I want for my child, and his friends..what I expect...I often fail to give to others. And I'm ashamed to admit it, because I know how it feels. 

And I know better. 

He also showed me that the annoying questions, and the odd things people have said to me, CAN...depending on how I react...sometimes be the beginning of building a "bridge" between people who see each other as different. 

I mean, we're all different...right? 

I'm so thankful that, once upon a time, as a young girl...Jesus met me where I was, and drew me to Him. And loved me. And all those times as a teenager, and then as a young wife and mom...and, even now, TODAY, when I mess up...Jesus comes to me where I am...and He draws me back to Himself. And He loves me. How can I do any less for someone else? 

"In as much as you have done it unto the least of these brothers and sisters of Mine, you have done it unto Me." (Matthew 25:40)

Monday, October 17, 2016

Most People (Still) Mean Well

Warning: this is a super-long post. I totally understand if you don't have the time. But, if you decide to stick it out, I'm gonna teach you the power of 4 words that will change your life. Not just with my situation with Joshua. They can also help you with other situations in your life. Learn from my mistakes, and save yourself a lot of grief. The four words are: MOST PEOPLE MEAN WELL.

After I had Joshua, I cannot even TELL you the comments that came my way. The people who made them were completely innocent of any malice (usually), but that doesn't mean their words didn't hurt.

There was the older family member who, after Joshua was born, told us that he remembered a family around where he lived who "had one of THOSE," and how they "KEPT HIM IN A BACK ROOM" at their house.

ARE you kidding me?

There was the older woman at my local Wal-Marks who came up to me and said, "he's not RIGHT, is he?" Joshua was about 6 weeks old at the time. I was IN.LOVE.WITH.HIM. I had dressed him up in a cute outfit. I remember he was wearing the cutest little cloth sandals. I think I still have them somewhere. And he had this full head of hair that stuck straight up in the air. But, at this time, Joshua's skin color was very gray. This was before he was strong enough to have his heart surgery. He was thin and weak...and gray. But I loved him with all my heart. I was already extremely concerned about his upcoming heart surgery, and so with this woman's question, I felt all of my protective mama bear reactions coming to a boil. Instead, I took a deep breath and looked into the concerned eyes of the little old woman. And I bit my lip to keep the tears from falling. And I said, "no ma'am...he's not right.'"

Because she was old school. And because she was genuinely concerned. And because if it's my desire to educate others about people like Joshua...and if I feel it's a ministry God has given me, to show that "God don't make no junk," then I need to be careful in my response. It might have given me some righteous vindication to tell this lady off, but really...what would it accomplish?

We have had great medical care for Joshua during his life. I just cannot say enough good things about the nurses, technicians, therapists and physicians who have watched over and monitored him. And our own Arkansas' Children's Hospital is the BEST! In Joshua's early days and weeks, he was hospitalized several times. When he was finally able to have his heart surgery, he was 3 months old. And so he was admitted to ACH two days before for pre-op procedures, and he was assigned a "team" who would follow him throughout the process. We had a head physician, a resident or two, and several medical students. Because ACH is a teaching hospital, we were asked the same questions over and over by different people...and had many med students come in to talk to us, and to meet and examine Joshua. It was during one of these sessions when I was one-on-one with a resident on Joshua's team. She was asking me about my prenatal care, my family history, and what prenatal testing I'd had. When I told her that because of my age (26), and the fact that it was my first pregnancy, I hadn't really had any type of testing done. I hadn't asked for them, and, at that time, they weren't routinely prescribed. Then she said this: "I guess if you had known [that Joshua had Down Syndrome] in advance, you COULD'VE DONE SOMETHING ABOUT IT." About IT. About HIM.

I don't remember what exactly I said, but this is a situation that...for me...did require a response. I just remember afterwards, I was so upset that I was shaking. I had her removed from Joshua's case immediately. This was a situation I could not file in my "most people mean well" box. Sometimes you DO have to speak up. Regardless of her personal beliefs, or if she was maybe trying to put herself in my situation, she should not have said it. My child was fixin' to have a very serious surgery. I had to know that everyone on his team was ON HIS TEAM; that they were seeing him as a child, not just as a child with a disability; that they ALL thought he was worth it.

There have been some funny comments along the way, too. Like the elderly nursery worker who told me Joshua "wasn't half bad." (Jim and I joked on the way home...wondering what "half" of him she was talking about!) And the other lady who told me that Joshua was so cute and smart, he must "just have a touch of it [Down Syndrome]." Isn't that funny?!

And there were some comments that, even tho they hurt my feelings...and I obviously remember them to this day...were too ridiculous to even bother to respond. Like the lady from church who told me that Joshua "ruined" her video of her daughter during the Children's Christmas Program. Joshua was pretty young...6-8 years old, maybe? He was standing near or beside this lady's daughter, and apparently was "incapable of standing completely still." Seems his animated facial expressions distracted her from filming her child. You would think that CHURCH would be the last place where you'd hear stuff like this,

There was the lady at WM (again with the Wal-Marks...I'm sensing a pattern!) who randomly came up to me and told me all about her brother who had DS, and asked if we had considered putting Joshua in a "home." And while I do not judge what anyone does when it comes to long-term care of their own family members, because who knows what the future holds for any of us, not gonna lie...this one rubbed me the wrong way. I told her I was very sorry about her brother, but Joshua already had a home...OURS. Argh. And did I mention that Joshua was standing there with me the whole time?

Oh, I've got TONS more, but somewhere along the line, God reminded me of GRACE...and He gave me this mantra: MOST PEOPLE MEAN WELL.

And they really do.

And they want to help.

They just get nervous and feel like they need to fill the air with...something.

And faced with a tragedy, or a loss, or in an unfamiliar situation...people are gonna say the wrong things. They just are. Haven't you?

I have.

How about "well, you can always try again," to someone who has just lost a baby by miscarriage? Or, "there was probably something wrong with that baby, wouldn't want that." Or, "God must've needed another angel up in Heaven?" Seriously?

When my Mom died unexpectedly of a heart attack, I heard: "well, she's in a better place." What I WANTED to say was, "how 'bout I send you to join her?" (just kidding) (no, really) And I heard, "God must've needed her beautiful voice up in Heaven." Really? God made her, and He gave her that beautiful voice to begin with...and if He needed a beautiful voice, He could've made himself another person with a beautiful voice right then and there. And then there are the Scripture references and all the "churchy" things we all like to say: "God has ordained our days, so her job on earth was done!" "God's ways are perfect!" "Precious in the sight of the Lord is the death of His godly ones."


I've heard all of these...and more. I've even SAID some of them, and I know from experience they aren't what you want to hear at the time.

Or maybe that's just me.

They are all good and right things, and things I already knew in my heart. But I was not ready to hear them. I KNOW my Mom is in a better place, but I miss her here...and oh, how I wish I could hear her sing I wish my children could know what a beautiful voice she had. I am thankful she did not suffer here on earth, but her death was so sudden. I was not prepared to be without her. And I know God is in control. I know He has ordered our days and that nothing comes as a surprise to Him. I know this world is not our home, and that she is in her Heavenly home, forever, with Jesus.

But I miss her.

So then...what to say?

God bless the friends who held me and simply said, "I'm sorry." Or, "this is so hard." Or, "I know you miss her." And the friends who still remember my loss with a card or a call, or who still ask about her 18 years later; who tell me how much she would've loved this or proud she would've been of her much she loved us all.

Most people mean well. Show them GRACE. Relax. They are trying to reach out out to you in their own way. If you snap back, you may lost an opportunity to show God's love to them...or to accept God's love FROM them. And day you might be the one who says the wrong thing at the wrong time, or the right thing at the wrong time...because you are just trying to help...or because you are trying to make things better. And you hope that they get that message, even if you bungle up the words. And you hope they know that you mean well.

Most people do.

"Let your speech always be with grace, as though seasoned with salt, so that you will know how you should respond to each person." Colossians 4:6