On Wondering What Your Kid Would Be Like Without Special Needs

Ahh...read this and loved it.

The moments always take me by surprise. It happened the other week, when my daughter and I went to see Alexander and the Terrible, Horrible, No Good, Very Bad Day. The movie's pretty funny, and Sabrina and I both laughed a lot. At the end, Alexander has a birthday party and his parents wish him a happy 12th birthday. Suddenly, tears started rolling down my face. Because my son, Max, is going to be 12 in a couple of months, and it was one of those moments when I thought, I wonder what he'd be like at 12 if he hadn't had the stroke. As I wrote on Facebook, "It's that total disconnect between loving the kid you have -- the Wonderful, Awesome, All Good, Very Great Kid -- and wondering about the kid who never was."

Birthdays have a way of bringing out the sadness. Last year, before Max turned 11, I found an old video from his birth, wrestled with the residual grief over what happened to him and accepted that it will probably always be part of me. The trauma that I went through when he was born that I occasionally relive is no reflection of my love for him.

Max, he is no trauma. Just the opposite: He is excessively wonderful and delicious. He brings me a whole lot of happiness. Which is exactly why it throws me when my mind considers a different version of Max. I'm unhinged not only by the sadness, but by the mental torture. It seems incongruous to love a child so fiercely and still imagine what other child he could have been. Not once have I ever imagined having a different Sabrina.

Also disconcerting: I am so proud of the progress Max has made and what he has achieved. I have learned to not judge him against his peers' development because he is Max, a kid who does things on his own timeline. And yet, I end up comparing him to some apparition of a child he could have been.

It comes down to this: Like the upset that I get when I think back to the NICU, this also has to do with latent grief. A part of me still mourns the child I expected, even as I worship the child that I got. This isn't about him -- it's about me.

Mostly, I don't feel guilty, I just find this deeply unsettling. One minute, you're fine. And the next, a couple of kids walking home from school and laughing cross the street in front of your car and suddenly your heart feels like the wind has been knocked out of it and your brain is spiraling into that place where the what-ifs and the would-have-beens lurk. I'll wonder what Max would be like if he was a kid who could walk home from school with a friend. Or if his speech was clear. Or what activities or sports he might be into if he didn't have cerebral palsy. I have never actually heard that ghost child speak in my head, but I have envisioned him dunking basketballs into the hoop outside a neighbor's house.

It seems like a lot of special needs parents are haunted by these thoughts, as evidenced by the Facebook comments. "Out of nowhere they come. Moments that take you to the depth of your soul," wrote Joyce. Maria spoke of watching a niece, the same age as her 9-year-old son with special needs, buy some chapter books at a book fair. "I immediately thought of James," she said. "I had picked out a simple Lego leveled reader for him. Once again, I was in my car crying." For some moms, visions of the other children come to them at night: "I will dream Sebastian walks into my room or says 'I love you' with a speaking voice and words he doesn't have," said my friend Kara.

I take solace in the fact that the ghost never lingers long. It's there, it's gone within minutes, I feel a little drained but then I get it together. I know the drill.

Perhaps the passage of time will exorcise that ghost for good... or not. Maybe it will always be one of those special needs parenting things. Maybe having aired this will help. Maybe there will be an app for that. Maybe one day Max will see me having a moment, slap me upside the head and type out on his iPad, "Get over it, Mom!"

What I do know is that coming home, giving your child a hug and feeling the warmth and solidity of his body next to yours is just what you need to return your head and heart to reality.

From: http://www.huffingtonpost.com/ellen-seidman/on-wondering-what-your-kid-would-be-like-without-the-special-needs_b_6040960.html?ncid=fcbklnkushpmg00000037

Bittersweet

My friend wrote this on her blog and I really enjoyed it...wanted to share.

The idea of bittersweet is changing the way I live, unraveling and re-weaving the way I understand life. Bittersweet is the idea that in all things there is both something broken and something beautiful, that there is a moment of lightness on even the darkest of nights, a shadow of hope in every heartbreak, and that rejoicing is no less rich even when it contains a splinter of sadness.

Bittersweet is the practice of believing that we really do need both the bitter and the sweet, and that a life of nothing but sweetness rots both your teeth and your soul. Bitter is what makes us strong, what forces us to push through, what helps us earn the lines on our faces and the calluses on our hands. Sweet is nice enough, but bittersweet is beautiful, nuanced, full of depth and complexity. Bittersweet is courageous, gutsy, audacious, earthy.

So this is the work I’m doing now, and the work I invite you into: when life is sweet, say thank you and celebrate. And when life is bitter, say thank you and grow.

To my people who are here (for whatever reason): stay here for a minute. Feel it, feel the bittersweet. Keep celebrating. Keep ugly crying. You won’t always ugly cry, I promise. When life is bittersweet, call it that. Name it. There is freedom in naming things. Surround yourself with people who can handle the bittersweet. The people who can love you during the bittersweet, I believe they will get a special crown in heaven. I do. Drop the people who can’t (for now). They’re the worst. The people who offer pity, silver linings, and sentences about God’s will and timing for your life? Smile, say a cuss in your head (if you’re into that), and let them go in one ear and out the other. And then have a glass of wine. Because they don’t have a clue. Sometimes life is really bitter. Sometimes life is really sweet. But sometimes it’s both. And that’s totally okay

Living your life

Levi and I have been having some big discussions lately about how our lives are going, and what we want our lives to be like in the future. We have been SO blessed, filled to overflow from our Lord and know that none of the blessing in these past 3-4ish years would have been possible without him. We recognize that it is God blessing us, but at the same time...we are very passionate about the fact that God made us extremely money-wise, and we are obedient to him with our money.

It doesn't consume our lives, and because we give to him first and have centered our budget around being able to bless others. Then we get to use it for fun afterwards...we live VERY full lives. One thing that has been interesting is how these blessing affect other people. Those close to us that understand our way of thinking are generally very excited for us about trips and want to hear every detail and love to talk about their trips too (because they have the "travel bug" as well). This can be an extremely touchy, awkward subject but it's something that has been on my heart lately.

I have been helping families at work who are having to deal with family member's that have strokes, alzheimers and other awful things that they are dealing with after their retirement. It makes us think hard about how we want to live life now. Levi and I have been discussing this and thinking...why wait till we're old to do the things we want to do, help the people we want to help. Why not do them now?

Found this quote today by Shauna Niequist and loved it.

“The life you’ve been waiting for is happening all around you. This is it. This is life in all its glory, swirling and unfolding around us, disguised as pedantic, pedestrian non-events. But pull off the mask, and you will find your life, waiting to be made, chosen, woven, crafted.
Your life, right now, is exploding with energy and power and detail and dimension, better than the best movie you have ever seen. You and your family and your friends and your house and your dinner table and your garage have all the makings of a life of epic proportions, a story for the ages, because they all are. Every life is.
You have stories worth telling, memories worth remembering, dreams worth working toward, a body worth feeding, a soul worth tending, and beyond that, as though that was not enough, the God of the Universe dwells within you, the true culmination of super and natural.
You are more than dust and bones. You are spirit and power and image of God. And you have been given today.”

Everyone has different ideas of what they want to do with their lives. Some people don't like traveling and love collecting specially made dishes (I insure tons of those at work). And that is awesome. Some people have amazing servants hearts and give most of their money away towards great causes. Levi and I are trying to figure out a balance of how to do that. But the thing I keep thinking is, that's awesome! Do what you like! Just understand you are making your own choices.

You don't have to go to Nicaragua to live an interesting life. You just have to listen to God. He'll provide the suspense and the dreams and the opportunity to be heroic and content with where you are in life and how your life is going.

THANKS!

Stress happens automatically- not delight.

And so that’s my mission. For the month of November I’m on a ‘gift hunt’. Intentionally making the decision to live and love out of a cup that is brimming with rich, steaming ‘enough. Laura gave me a little album of recycled paper clips and I'm going back to recording things that I love throughout the day that make me feel God's love. I had a little journal like that all throughout highschool that I called my happy book...but I lost it. Try two!

It's going to be an amazing month. We are in the middle of planning for Austin, Asia, new houses, new phone plans, new jobs, new EVERYTHING! (mostly anyways). I LOOOVE change. love it so much! Can't wait!

Facing Giants

There has been so much going on this past month with losing Christie Jacks, moves to new cities, building and buying new houses, scary car wrecks, besties getting married, babies coming into the world, parents overcoming cancer and dealing with cancer, trying to get new jobs and transitions in marriages, friendships etc. It’s hard for me to wrap my mind around everything all the time and to not feel overwhelmed.  This gave me some encouragement and I hope it will for y’all too. 

“Maybe God allows giants in our lives so that we can be filled with whatever it’s going to take to defeat them. When little David faced and defeated the giant Goliath, he was filled with courage and total confidence in the power of his God- and it was those things that enabled him to be a mighty leader for the kingdom. As weird as it is to say- and as hard as it is to swallow- maybe those giants are in our lives for a reason. I’m not saying that God wants us to hurt or that He delights in watching us cry with searing confused hearts. But rather, that God wants to replace those hurts and that confusion with something new. Instead of taking away our insecurity, He wants us to be filled with an unshakable confidence of who we are because of whose we are. Instead of just taking away our pain, He wants to replace it with a much deeper healing- more than a Band-Aid or a Hoover could ever hope to accomplish.

Today, I’m praying for tender hearts and for the giants and for the storms- and praying that God will replace pain with healing, brokenness with wholeness and despair with pure, sweet joy. Let this scripture soothe your soul. Let God’s Word soak into your heart- reminding you of who He is, and what He’s doing in even your messiest circumstances. Look for the things He’s replacing- and what He’s replacing them with.

Isaiah 61: “The Spirit of the Sovereign Lord is on me, because the Lord has anointed me to proclaim good news to the poor. He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, to proclaim the year of the Lord’s favor and the day of vengeance of our God, to comfort all who mourn, and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes, the oil of joy instead of mourning, 
and a garment of praise instead of a spirit of despair.
 They will be called oaks of righteousness, a planting of the Lord for the display of his splendor. They will rebuild the ancient ruins and restore the places long devastated; they will renew the ruined cities that have been devastated for generations.”

(full post here: http://stephanielouisemay.wordpress.com/2012/10/31/facing-giants/)

Thank you, thank you

HAPPY TUESDAY! Today has been a wonderful, great day. I'm drinking a caramel machiatto at work and I think I just sold 2 things on Craigslist! $200 more towards Asia woot! Loved this today:

“When life is sweet, say thank you and celebrate. When life is bitter, say thank you and grow.”

~Shauna Niequist 

I am, I will be

Today is a great day to proclaim truths. Mhmm!! So here it is.

Sometimes I can be a force to be reckoned with. I am mostly happy and confident and if I give you a snap of my fingers or a touch of attitude- you know you’re in.

I love to love. I'm the kind of woman that you just WANT to have on your side, because once I am, I’ll love you forever. I have a bit too much attitude sometimes, and sometimes my emotions can be frustrating for those around me, but I am loyal to the bone.

I love to make friends with everyone I meet, and love to have lots of different kinds of friends. I get my energy from other people and only need like...ehh 5% alone time a day... so I love to have lots of friends & family to call to hang out with or just chat.

I'm honest, faithful, loyal and I love with absolutely everything in me. But since we're declaring truths today, here's one of my best and worst flaws. I'm a fighter.

I'm a woman who hates injustice. I'm a woman that is not afraid of any type of confrontation if I think someone has been wronged or hurt. I'm a woman whose heart literally breaks for the people hurting around me, and I'm a woman that will get up and fix whatever wrong has been done without thinking twice. (Ask any of my friends or family...they will tell you that I will be glad to fight for them.)

This has also become one of my faults. I have had a few girls in my life that I have been WAY too aggressive towards because I thought that they were attacking the people I love. Unfortunately, I didn't feel bad about it either. (My mom used to call it the Kara bomb). Sadly, sometimes the people that are on the bad side of my attention have not really done anything wrong. Emotions have slightly thwarted the situation. OR, they did do something mean, and instead of lovingly trying to communicate, I decide I want to win for the sake of my loved ones. This normally means hurt feelings.

I am working on this, along with many other things. But today, I felt God telling me that I am loved, and I need to embrace the person he made me. Even though I'm not a laid-back, calm person...I am awesome. Mhmm thanks God!

I'm a daughter of the King and he has made me a passionate, loving, excitable, not laid-back, joyful person. I LOVE life, and I love getting excited over the little things in my life and other's lives. I don't mind having calm time every now and then, but I definitely love having a loud, good time with my friends. God has given me an AMAZING laid-back husband who is FULL of grace, which is such an amazing amazing blessing.

This is me. I am blessed.

loved loved LOVED

I'm sitting at work, drinking my White Macademia Coffee and thinking about all the ways that I feel God showing me how much he loves me. Here's my list for today:

• When Hey, Soul Sister by Train comes on the radio
• Dappled sunlight
• A warm, gorgeous day
• Sunrises
• ACU's campus in the morning when I'm walking home after my workout
• When God gives me and Levi the desires of our heart when we NEVER thought they would happen, woot!
• Walking the dogs in the evening
• Free samples at grocery stores (not kidding, I LOVE them)
• Starbuck's seasonal drinks, currently Pumpkin Spice Lattes!
• Levi Gates
• Sweet little Darla when she follows me around and isn't being annoying, I love cuddling with her
• Puppies
• Traveling

Happy Thursday!

Sparkle and Pop

Levi and I got back from Mozambique, Africa last Friday and I have been having a hard time adjusting. Not so much to my life back in the States but my perception of everything has changed.

We were blessed to get to spend a lot of time with family right when we got back and it was hard talking about the trip.

How do you summarize such an amazing experience that is nothing like the lives we live here, and the people are nothing like the people I know here.

I haven't quite wrapped my mind around the trip which makes it hard to talk about it. Sometimes little stories will pop out when something reminds me of Mozambique, or the kids.

But mostly, I have just smiled and said, "it was amazing."

More than anything, I think Zimpeto orphanage and the kids showed me how to celebrate everything. Every child at the orphanage is loved and CELEBRATED. Levi and I got to work with the special-needs house at the orphanage and I think it was my favorite day of the trip.

 They have kids with all different kinds of disabilities such as CP, one was born without eyes, and none of the kids in the house could talk. One precious boy was born with some kind of disease that slowly eats away your muscles. He used to be able to walk and can't anymore.

 Another sweet boy named Alfredo couldn't do anything, and had to be carried everywhere and fed slowly because he wasn't able to swallow well.



One thing that touched me about the Tias (women that took care of the kids) was that they would tell us about the kids, then would praise God for them.

Thank God for something unique about the child whether it was how much they liked to dance, or how much they liked music or how sweet their smile was.

I tend to make huge lists and go through the motions for every-day life when I'm back at home. I used to be great at thinking of things that I loved throughout the day, "blessings" that I could thank God for, but it has been harder for me the past couple years.

I've been reading One thousand gifts by Ann Voskamp and I love her equation for feeling close to God and having the most amazing, joy-filled life. It's simply thanking God for everything.

I found this today and LOVED it. Put my thoughts into words:

My love language is beauty.
I see the world in color and flavors and surprises and gifts.
My favorite days are the kind where you feel pretty and strut down the street like the heroine in a movie with a really fantastic soundtrack.



You know- the kind of days where you have big eyes to soak in the beauty of the world- even when the beauty comes in the form of things that are hard.
My surroundings mean the world to me, and my entire day can be made by a really good cup of coffee.
My Pinterest account is the gift that keeps right on giving, and my desktop is constantly full of writing, videos, photos and beautiful things dragged and lovingly kept from all corners of the inspiration-explosion we call the internet.
I’m passionate about the necessity of well-chosen glassware (don’t even get me started), an intentionally decorated house (you have to LIVE there- why not make it look like the inside of your heart when it’s at it’s best?) and really fluffy linins (especially important to me having just spent a year sleeping on a mattress pad and showering with an REI quick dry towel.)
I love creativity and creating and the creations around me, but mostly because they reflect the face of my Creator who is the most stunning of all.
I believe that life is a brilliant display of sparkles and pops and if we take the time to zoom in on a moment and notice, we’ll find the dazzling kaleidoscope of color zinging and bouncing around our seemingly ordinary world.
I believe that beauty is both simple and profound and can be found IN the most simple and the most profound parts of life.
And I believe that a life looking for beauty is a life well lived. I believe that stopping to smell the roses is the key to satisfaction, contentment and joy, and that by celebrating the gifts that fill and overflow in our every day life, we give glory and honor and well deserved gratitude to the Giver of the best gifts.
The best gift of all, being life with Him.
So a toast.
To sparkles and pops and gifts and glitter and all things beautiful- both the simple and the profound.
And most of all, to taking time to notice them. And giving credit where credit is due.

Thank you Lord for such an amazing experience. We are filled to overflow, and are so so blessed.

My Race

However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me the task of testifying to the good new of God's grace. Acts 20:24

Praying for the sweet orphans Levi and I get to meet next month! Can't wait to love on them and hold them.

CHINA- "wahhhhh"

When I lived in China, I went to go watch the Olympic torch go through Wuhan and when I started taking pictures...I noticed that all the people in my pictures were taking pictures of me. This happened quite frequently in China, but since the crowds were HUGE at the parade I got some really funny videos and pictures. Looking forward to this when we go in December! Especially with my super tall husband. He'll get all kind of "wahhhhhh"'s and pointing :) Also, note how much taller I am than everyone.

Yes, someone even busted out a video camera.

Can't wait to go back!

Peace

Feeling peace today.

New Living Translation:

Psalm 23

A psalm of David.

¹ The Lord is my shepherd;
    I have all that I need.
² He lets me rest in green meadows;
    he leads me beside peaceful streams.
³     He renews my strength.
He guides me along right paths,
    bringing honor to his name.
⁴ Even when I walk
    through the darkest valley,^[a]
I will not be afraid,
    for you are close beside me.
Your rod and your staff
    protect and comfort me.
⁵ You prepare a feast for me
    in the presence of my enemies.
You honor me by anointing my head with oil.
    My cup overflows with blessings.
⁶ Surely your goodness and unfailing love will pursue me
    all the days of my life,
and I will live in the house of the Lord
    forever.

For my sweet dad

Dad's starting his radiation treatments today and my sister did a great post for him. Head on over them and leave him an encouraging comment!!! Thank you! Love you dad!

Here's the link to her blog:
http://theadventuresoftootieandizzy.blogspot.com/

China and Thailand?

Happy Tuesday! Levi and I are having a grand ol' time coming up with things we want to do before he starts a real job. Since Lauren and Lark were accepted to China to teach English (wahoo!) we are trying to go over there with my parents for Christmas this year! YAY! Then...since Levi will be out of school and I will be done with my job (yessss) we are going to backpack in Thailand for a month! We are spoiling ourselves this year haha it's going to be tough next year to not leave the country every couple months :) Here are some places we are excited about visiting.

The Great Wall in Beijing, China



Phuket, Thailand

Chiang Mai, Thailand

Shanghai, China

We haven't planned anything out in detail yet...still trying to get through Africa planning.

On another note...
“And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.” Hebrews 11:6

Trying to wrap my head around all the different kinds of poverty we will experience in Mozambique, then in Thailand. They are going to be amazing trips and full of blessings but they will also be hard. It will be hard to see the child prostitution scene in Thailand/Phuket and not be able to change it. That is what I struggled with when I lived in China. I met all these amazing students, and saw the injustice of the school system, and also some of the government and I couldn't change it. Iris Ministries, that we are partnering with in Mozambique, has a saying that you "stop for the one." It is hard to make a huge difference immediately, but that stopping for one will slowing make a change. It's going to be an amazing year.

Love y'all!

Missing sweet friends today :)

This week has been a breath of fresh air to me! I've started a new workout phase at the gym which has been awesome, I got a new office at work with WINDOWS yay, and I have gotten to have friend dates every single night and have more coming up! Lauren and I have kind of been entertaining ourselves in good (lame) ol' Abilene, so it's been nice to have a different routine for a bit. (Speaking of new routines...Lauren come to the gym with me tomorrow, mmk?) :) Levi has his championship game tonight for basketball which should be really fun and I'm cleaning the house for the PARENTS coming to town! Blessed.

Lauren I'm praying this for you for Pinkle right now

Deuteronomy 7:13 He will love you, bless you, and multiply you. He will also bless the fruit of your womb and the fruit of your ground, your grain and your wine and your oil, the increase of your herds and the young of your flock, in the land that he swore to your fathers to give you.

Wednesday and Tyson

Happy Wednesday! Today has been an interesting and hard day. But somehow God managed to get my attention even though I am being extremely whiny and selfish today and He showed me that I am exactly where I am supposed to be right now. That the job is hard because he is trying to make me into the person he wants me to be. And yes, he is shutting all other options right now because this is where I'm supposed to be. And thank God I haven't given up yet.

"And this is what I learned: the hard does not minimize His goodness but allows us to experience His goodness in a whole new way."

Prayers for Levi today!! He is being SO BLESSED by friends and family referring him to different people they know in the medical sales device field and has some "interviews" today. Woohoo! I know he'll do great. We're excited to see where God moves us! So many options :)

On another note, Tyson has decided to be a social farter in our house. We had 10 guests in and out of our house this weekend and Monday and Tyson strategically did room-clearing farts ONLY when we had guests over. That dog is sneaky. We've tried switching his food up but Levi thinks it's only making them more toxic. SO...come visit us in Abilene!! :)

AFRICA

SO SO SO excited to go to Africa with Levi! I am not nervous about disease or AIDS, or parasites (mostly), but I am nervous about what we will see over there and how we will never be the same again. Wondering and so excited to see what God will do with us while we're over there and how he will change our hearts!!

Proverbs 24:12  Once you have seen, you cannot pretend that you do not know. For the Father that knows your every thought, KNOWS that you KNOW!

Woohoo can't wait!!!!

haircut for Darla?

GO GO GO

Lots of thoughts bouncing around in my head today. We considered getting rid of our precious miniature aussiedoodle to one of my friends today because she's been desperately looking for a dog...and Levi doesn't love little Darla. But, after many long conversations Levi decided that he doesn't mind her as long as I am the one taking care of her. So, we'll see how that goes! It's been interesting though having to prioritize things in my life. I love Darla, but I love Levi more so if he says so, the dog has to go. And I love my Lord, but sometimes I love my life more. So if the Holy Spirit shows me someone I need to help and it doesn't fit my day or it could be really really awkward, sometimes I choose myself.

Lots of random thoughts, but it makes me think about what I really care about passionately and if I am living a PURPOSE driven life. Am I looking for the opportunities and not letting them happen to me. I read this the other day and it terrified me:

One of the clearest passages of Scripture that sheds light into what Jesus was passionate about is Matthew 25 verse 31-40. Jesus is speaking about the final judgment of mankind and the manner in which man will be judged. He talks about separating the goats from the sheep according to how they had lived their lives. Verses 34-40 read:

“Then the King will say to those on his right, ‘Come, you who are blessed by my father, inherit the Kingdom prepared for you from the creation of the world. For I was hungry, and you fed me. I was thirsty, and you gave me a drink. I was a stranger and you invited me into your home. I was naked, and you gave me clothing, I was sick, and you cared for me. I was in prison, and you visited me.”

“Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? Or a stranger and show you hospitality? Or naked and give you clothing? When did we ever see you sick or in prison and visit you?”

“And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’”

⁴⁶ “Then they will go away to eternal punishment, but the righteous to eternal life.”

Want to say this at the end of my life:

“I have fought the good fight, I have finished the race, and I have remained faithful. And now, the prize awaits me—the crown of righteousness, which the Lord, the righteous Judge, will give me on the day of His return. And the prize is not just for me, but all who eagerly look forward to his appearing.”

Happy Valentines Day!

The hard does not minimize God's goodness but allows us to experience His goodness in a whole new way. Thank you Lord for giving us the most amazing example of love, a GREAT example on this day of love today.

HAPPY VALENTINES DAY!! I've been having a lovely day here in Abilene. Work hasn't been too crazy and it's warmed up to where I don't have to wear a jacket. (I hate covering cute clothes up in jackets...haha)

Very random blog post today, but I am thankful and I hope you are too as you're surrounded by loved ones on Valentines today!