To the Mama of a Special Needs Child,

You never thought that would be your name, did you?

You used to look at other mamas with children who had special needs and think to yourself, "I could never do that. I'm not strong enough."

But now that's you, and you're proud. Because that little one that calls you mama, he is the strongest soul you know.

With everything he has experienced in his short little life, he is so happy. And it makes you want to be like him, full of joy, even in the hard.

He has more "labels" than you can sometimes remember. You have to count to make sure you include all of the specialist you see. All of the hours of therapy during the week leave your schedule full before the week even begins. And those therapist, they become friends.

You cringe when you're in public and someone sneezes or coughs. You whip your head around and move away as quickly as possible. Because a little cold for them, could be life threatening to your little one. Your knuckles are cracked and you can never keep polish on your nails, because you wash your hands all the time. I see you in the back of the church, walking and bouncing, so desperate to hear Truth because you NEED it. But putting him in nursery is not an option.

Most mamas, save their work sick days for when they are sick, or their kids are sick. You walk into work on those days either feeling guilty for leaving your sick children at home with the nanny, or walking into work so sick yourself.

Because sick days are not for being sick, they are for hospital stays, and you never have enough.

And then on the days that no one is sick in your house, you wonder if you can even make it to work, because the day to day of caring for that sweet baby with special needs is more work than anyone ever understands. The worry of leaving them. What if he falls? What if his tube gets caught on something? What if he stops breathing? What if he aspirates?

It's too much. It's too hard. So you do your job as best as you can. But you know the whole day, he needs you more.

Being a nurse was the last job you ever wanted. Bodily fluids, blood, and needles, they used to make you squirm. Now, you give yourself a high five, because girl, you are doing it! You get a ferrel bag, a connector, and sister, you are good to go! You can prime a tube with your eyes closed. J connectors, G connectors, bag tubes... there are all kinds of tubes in your life. For someone who wasn't that great at math, you can calculate rates and doses better than the nurses. The beeping of the trash truck down the street, or the microwave, or a sound on TV, will send you running to the pump. You hear every beep, all the time.

You can syringe meds in the dark, almost with your eyes closed. The day when the medical supply shipment comes in, is sort of like Christmas, in a weird way. Four whole boxes to sort and store, and a fresh batch of feeding bags laying neatly face up, it's satisfying. And there's nothing more exciting than new syringes.

Your two year old, puts medicine in her baby's tummy, because she watches mommy do that to brother. She is the first to tattle on him, "No, broder! No playing wifth your cords!" And thinking of her, sometimes you feel guilty. Because that baby with those special needs, gets a lot more of your attention. And it isn't fair. The hospital stays split your heart. Because he needs you so desperately, but you feel as if you're missing out on sweet days of her life. Those moments, when everyone is together in the hospital room, are the sweetest. You remember that's really home, where you're all together.

And right when you begin to hear good news, when things start to become your kind of normal, the bottom drops out again. And a test that was supposed to be nothing, turns into something, a big something, and you can't imagine how life will go on.

You hear someone complaining about how their kid has the flu, and you would give anything for the flu. The flu goes away.

But this, what your baby lives with everyday, this doesn't go away. And now, just as you start to learn to live with the first thing, now you're facing a whole new mountain. It's way bigger than the last. More complications, more risks, more "less normal." And you wake up every morning, still living in the dark, reminded again that this is real life, and you must choose to reach out and grab the Lord's hand.

Because, ultimately, He loves that baby with special needs more than you can ever dare. And those things that make him so special, are not mistakes. He was formed perfectly in the dark, in the uttermost parts of his birth mom's womb. The Father was there, intently watching him, purposely forming him to be special, creating him for great things. He was carefully planning out the days of his life, and choosing YOU to be his mama.

Because this child, was wanted more than he will ever know. You prayed, begged God even, for him. He is a miracle. And a gracious gift.

He's special alright. He has obstacles in his life that might make things a little harder, but nothing will hold that boy back from doing what he wants!

Mama, you teach him that.

And when you are so tired, when you feel so misunderstood, you start that comparison thing, and you begin peeking into the future, stop yourself. Because tomorrow will bring enough worry on it's own.

Be here, now. In this moment.

You study every sweet line in his face. Etch that grin in the back of your mind. And you enjoy him.

Because he is a gift. A very special gift.

Surviving Sarah Podcast: Episode 14

My last post, I told the story of how God asked me to "close the door, take time to heal, and fall in love." Over the past few months, I haven't been writing as frequently, but have been invited to do some pretty cool things. Last week I was asked to speak at a large ladies event in my hometown. It was an honor to be asked, but even more an honor to be able to talk about my Dad all night. I was able to meet some of you who follow along with me through the valleys and mountain tops of our story.

I often sit behind this computer and type my heart out to you. It's honestly scary some days, and it's not often that I am able to see where my words land. But that night, to be able to wrap my arms around some of your necks, see your sweet faces, and the eyes that read these words, was such a blessing. I can't thank you enough for following along. And it brings such joy to my heart when I am able to hear what Father is doing in your hearts and in your sweet families.

I was also able to be on a friend's podcast recently. I met Sarah Bragg at

Allume

last October. I saw her walking up to my table and thought, "Gosh, she's so cute!" She just sat right down, introduced herself to me, and it felt as if we had been friends for years. She is an amazing mom, beautiful writer, and home girl knows how to dress! She has written a book for middle school girls, and has spoken all over the country. After talking with her, I knew her heart beats for the Kingdom. And that is exactly the kind of friends I want to have!

God called her that weekend to start a podcast. And she's one of those people that decides to do something, and just does it! Her podcast is amazing! I get so excited every Tuesday, because I know her next episode will be sitting in my inbox. You need to go to ITunes, search for her podcast, Surviving Sarah, and then subscribe! Follow along on her blog too! I promise you won't regret it!

I was so honored when she asked me to join her for Episode 14. We talked about everything from our love of coffee, to books I'm reading, and the hard that has filled my last few months with our sweet boy. I shared our whole journey through infertility and the sweet moment I held Selah for the first time. So if you're new around here, it will be a great way for you to get caught up with our little story. But also, how awesome is it to hear someone's voice?! Even though when people call me on the phone, they ask to speak to my mom. Wow. Anyways...

You can listen in to our conversation here:

http://www.survivingsarah.com/blog/episode-14-jessica-satter

I'm breathing in His beauty today.The sun is shining over here, friends! And if it isn't where you are, He is still working in your waiting, and making beauty from all of those ashes! So lift your face, sweet girl!

All my love,

Jessica

When God Doesn't Answer Prayers

I wrote in my new journal today. It's really beautiful. The cover is printed with floral designs that are muted in pinks and greens. The binding is threaded so it folds perfectly. And even though the word, "Journal," is stamped in gold for all to see, eventually my two year old will tear out a few pages. The crisp pages filled with lines, wait to hold a story. My story for the next year.

I journal almost everyday, you know, on my

white couch

. It's our time. Me and God. I read His Word and then process how He speaks to me on those pages. They're filled with heart cries. I can be honest there. I'm safe to really be me, because He made me, He knows me better than I know myself. So I pour out my heart. The good, the bad, the ugly, my dreams, my aches, my deepest pain. It's all written in between those lines. I have boxes of journals filled with prayers He has answered. I love looking back at the start of a new year, reminding myself of all the prayers He answered. It's encouraging. I'm reminded of His faithfulness. And there is something powerful in seeing Him hear me.

In those pages are also prayers He hasn't answered. Like this

barren womb

. There are years worth of prayers asking for that healing. I have two beautiful babies sleeping upstairs that are more than I could ever dream. I sometimes have to remind myself I didn't give birth to them. And when I have to check the race box on the doctor's forms, is the only time I remember that our skin doesn't match. They are mine. They are blessings. They have filled the longing in my heart to be a mother, and the way the Lord brought them home to us has been nothing but a beautiful miracle. But those prayers I prayed for

physical healing

, have not been answered.

I knew God was going to heal Micah right in the knick of time before he had to have surgery. Two weeks before, a group of Believers prayed healing over his sweet body. And I felt the Lord touch him. I watched Micah respond. It was real and powerful and we left believing so hard in his healing. And three hours later, we were beating his back again, trying to get him to breathe.

We spent another five days in the hospital not even two weeks after that. The GJ tube we

didn't want him to get,

he got. And for the first time since we have

brought him home

, I haven't lived in constant panic, wondering if he would aspirate and I wouldn't get to him fast enough. I have actually had a few nights where I slept straight through the night. More importantly, he is much more comfortable. He rarely vomits now. And if he does, I now know how to vent his G tube to ease his discomfort.

We made the right decision. We really did. It was ultimately a matter of keeping him alive. But his feeding/speech therapist told me the other day, "As long as he has the GJ tube he will not oral feed." It's because his stomach has shrunk to the size of a newborn's. If we were able to get food in him, his stomach isn't emptying right now, so he would vomit it back up. His oral aversion is so severe we play with spoons without food during therapy. He takes nothing by mouth. Not even water. It's a miracle if he lets us get a finger in his mouth to rub his gums. And we carry his little pump book bag around with us everywhere now, because he has to have continuous feeds. I finally monogramed it, so at least it looks cuter. There are so many kids who have much more serious illnesses. And we are very thankful Micah's isn't as serious. Many children with feeding issues often show signs of neurological problems. We are thankful so far he hasn't shown any other signs of delays. But this new tube is still an unanswered prayer.

Really, God answered our prayer, it just wasn't the answer we were hoping for.

It's hard, isn't, friend? When God doesn't answer our prayers, it's so hard. We know "that nothing is impossible with Him." We believe that He doesn't give his children rocks when they ask Him for bread. He says, "Ask and it will be given to you."

Then we do, and He doesn't. And we're left wondering how to move on. It leaves questions, if we're honest, about Who He is and Who we know Him to be. It's a dangerous place to stay.

So I grab that box of journals, and I read until my eyes are tired of all the times He has answered me. Not only that He has answered me, but how He answered me. It is never the way I imagine, but always more beautiful than I could fathom. I dive deep into His Word and rather than letting doubt sneak in, I preach to myself Truth. All.day.long.

Somewhere between the unanswered prayers in the past and the waiting on Him in the future is this sweet place of rest.

It's there I quit striving. I quit trying to plan everything out. I quit trying to figure Him out. And I just rest there, in Him. The sting of the "No's" or "Not Yet's" is rubbed over with the balm of His nearness.

And my heart decides trusting Him, regardless of His answers, is so worth it.

There aren't enough journals to ever write of His worth.

So I'm learning again that as He tears me down, He will bind me up. As He ruins me, He will heal me.

And tomorrow, I'll meet Him there, on that white couch. I'll breathe in His presence, I'll drink His Word, and I'll be praising Him if He answers the prayers in my journal this year, or not. Because I've seen a glimpse of His worth.

And just that glimpse is enough to trust Him.

"Come, let us return to the Lord, for he has torn us, that he may heal us; he has struck us down, and he will bind us up. Let us know, let us press on to know the Lord; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth."

Hosea 6:1,3 ESV

*Photos by

Rachel Ackerman Photography

*