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.