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.

A Word to All The Mamas

Our bags were thrown on the counter, still packed from our hospital stay.

Brandon was frantically searching for the "therapy" paci. It's supposed to strengthen his suck, they say. I was

holding

wrestling my very sick seven week old, begging for him to just drink an ounce. I held him the way one of the thousand therapists showed us at the hospital when he decided to stop eating. But even with professional techniques, his nails dug into my skin, his back so arched he was basically standing on my leg, and his little, tiny frame desperately begging to be nourished.

He was exhausted from being poked and prodded on in the hospital. After all, learning to eat has been a long journey for him. I was running on fumes. Not just from the hour of sleep I got the night before, but from the seven weeks of mothering a sick baby... and an 18 month old. My husband rubbed my back, trying to be strong for me, but after the week we just endured, I knew he was just as scared. Just when I thought there were no tears left to cry, I felt a single hot tear drip down my face. And it turned into a waterfall of the emotions I had been holding in over the last few days.

Just like my baby's little body, my heart felt malnourished.

Dry. Bone, slap, dry.

And then I heard her words, "You are leaving a legacy. These babies, they will be Kingdom Warriors. I know you're tired, but you're doing it, mama. This legacy, this story, is so much bigger than you. Bigger than you can ever imagine. Keep doing it! Keep doing it, mama!"

And then I prayed for grace and patience, put that bottle back in his mouth, and got another ounce in him.

Adoption is hard sometimes. The waiting. Paperwork, pre-placement visits, post-placement visits, more paperwork, the money...

Bonding with a child that doesn't look like you, or share your DNA. It's hard if I'm being honest. The questions. All the questions. Explaining your life story to everyone. All the time. The pharmacist was the most recent inquirer. When all you want to do, for heaven's sake, is get the medicine that might work, this time. "Yes, I understand he does not have my last name. But he is mine. I promise, he is mine. No, I don't have his Social Security number. Try this last name, and see if he comes up. I understand, but this is all I have. I am his mother, and this is all I have." Hard. And frustrating.

Being a mama is hard sometimes. Honestly, lately I've found myself jealous of other mamas and their healthy kids. The posts on Facebook of their 3 week old sleeping through the night drinking 10 ounces of milk, breastmilk, that is. (Not really, but really.) And I'm over here, up every thirty minutes, walking up and down the hallway upstairs. Bouncing, twisting, singing, crying. Praying maybe the next feeding will be better.

My dear husband walked in the door the other day, and said, "Have you seen yourself today? You look a little frazzled." I ran to the bathroom and literally busted my gut laughing so hard. It felt good to laugh.

And PS I can't believe I actually posted this. But it's real. This is real life, people.

In the middle of the night when I walk down the stairs to get a bottle from the fridge, I see that

white couch

. And my heart literally aches. Almost grieves. In between screams, I go and lay there for a few seconds. Not saying a word, just

breathing

. Knowing that He is always with me and I can find My Place in Him, but wishing for the minutes where I could sit and pour out my soul to Him, there, in our place.

The last few weeks, I have offered up the most pathetic prayers. And I'm okay with that.

Sometimes, the best we can do is turn our hearts toward His.

 I'm not even sure most of them contained words, mostly groans, but I know they were heard.

Even though he hadn't eaten much that day, I still went. A night with my friends. We ate sushi and drank a good glass of wine. And a few hours away did my heart such good. I was feeling strong enough to pick up the babies and keep doing this mother thing. Right as we were leaving, I ran into the mother of one of my sister's high school friends.

She pulled me aside and before she opened her mouth, I knew the Spirit was about to speak to me. She went on to tell me that she woke up in the middle of the night the previous week and started fervently praying for me. Tears started streaming down my face, because the time when she was awake praying for me, I specifically remembered being awake walking him, praying for him, begging for his healing.

Her normally sweet, soft voice, had a tone of Authority. Although there were hundreds in that room, it felt like it was just her and me. I could almost feel the Spirit's hands cup my face. She said, "Listen to me. I feel that God has a word for you. He wants you to know that you are leaving a legacy. You are building a legacy. Changing diapers, walking and bouncing and twisting a sick baby, you are raising Kingdom Warriors. And this Story, that you find yourself in, is so much bigger than you. You can't even imagine how big. What you're doing matters, mama. I know you're tired. I know you're heart is exhausted, but what you're doing matters. It matters for the Kingdom."

As I was wiping tears from my face, she hugged me, told me she was praying for me, and walked away. Just like that. An obedient sister. She had no clue the taste of her words, to my parched heart.

So after quite the scare with our little man, and our hospital stay, I am more than happy to scream to you that HE IS EATING!!!!! And not just a few times, but EVERY (almost) FEEDING. Now it takes some serious effort, a completely silent room, a swaddle, a kung fu hold, and an unbelievable amount of patience. We are starting all kinds of therapy, and are so thankful to finally get some help and relief. I have seen more smiles in the last few days, and heard the sweet coos of a happy baby. AND, wait for it, he's sleeping through the night! Yall. Say it with me, "sleep!" I've never been more thankful for sleep in all of my life!

Last night as I was praising God for an empty bottle, I realized I can't be the only one who has ever felt this way. Whether your an adoptive mama, a bio mama, a waiting mama, a sleeping-baby-through the night mama, a breastfeeding mama, a formula feeding mama, a mama to one, or a mama to fifteen, there comes a time in every mama's life when it's all too much.

You feel like you will never sleep again. Ever. You walk around smelling spit up all day. It's almost like your bladder gets the memo and grows a little larger. You learn to nibble throughout the day, because there's no way you're eating at mealtime. Your sweet husband who normally tells you how beautiful you look, will sometimes ask if you've looked at yourself that day. You'll find stinky milk cups under the seat in the car, and if you have to put that kid in time out one more time for that same thing...

You long for the days when you can sit with Him. And then you realize, when you can't seem to get to Him, He always finds a way to get to you. It might be through a text from a friend, the prettiest cloud, a little bird's song, or honestly, the fact that there were no clothes in the dryer and you could simply move the wet ones over. I love when that happens.

Then sometimes, an obedient sister, opens her mouth and speaks straight to your soul.

However He does it, He finds a way to pursue your bone dry heart.

And He says, "Listen to me. I am writing a story that is bigger than you. It is bigger than you can ever imagine. Those sweet babes who you love so much. Through them, you are leaving your legacy. Every diaper you change, every second of sleep lost, every bedtime prayer, every song about Me, every big prayer you pray for them, you are training Kingdom Warriors. What you're doing matters. I know you're tired. I know you're heart is exhausted. Let me be your rest. Find your strength in me.

It's okay if your prayers seem pathetic, I especially lean into those."

You're doing it, mama. You're doing it!

*Photo by Rachel Ackerman Photography*

What you're doing matters.

It matters for the Kingdom.