Micah's First Birthday

One whole year. Hospital stays, surgeries, G tube, GJ tube, cerebral palsy, hours and hours of therapy, all of these things happened in one year. There were several moments throughout this past year, Brandon and I looked at one another and weren't sure Micah would make it. When he was aspirating and we would find him blue. When his sugar would drop so low so fast. When small viruses that are nothing to us, turn into week long hospital stays with complications. Today we celebrated this sweet boy and all he has overcome. He's a fighter, my son. And everyone should be celebrated on their birthday, but he fought extra hard for it.

It was a beautiful day.

I decided to make cupcakes instead of buying them like we normally do. They're not the prettiest things I've ever seen, but boy, were they good! My hubby liked them too because making them saved us about 60 dollars. I'm not going to lie, they were yellow box cake. But my mom gave me the recipe to the best ever lemon icing:

Cream 1/4 cup softened butter with 2 cups of powered sugar. Scrap the sides of the bowl and then add 2 tablespoons of lemon juice. Mix again. Makes enough icing for 12 cupcakes. Seriously it's the best icing you'll ever have!

We have TONS of formula cans around here because Micah has to use a special hypoallergenic formula for his tube feeds. So I started saving them a while back because I saw some potential in them. I tied some twine around them, put some grocery store daisies in them, and they just make my heart so happy. I thought they went along perfectly with the woodland friends theme.

And while I'm sharing recipes, you can never go wrong with Hawaiian Punch, pineapple juice, and Sprite.

If I'm being honest, it is so much easier for me to share my heart with you, than to share things like this. Mainly because I'm sure someone out there has done this better. Their house is more perfectly decorated, their ideas actually turn out like their Pinterest boards, and their photos are perfectly edited. For heaven's sake, half of my friends are photographers. Not me.

But that's just the thing. I had all of this pressure on making his first birthday perfect. We look at our Facebook and Instagram feeds and feel inadequate and start the compare thing. But WE are the ones that put pressure on ourselves.

What really mattered were the ones around this table. The precious friends who have watched us fight through this first year. The ones who have cleaned my house, brought us meals, babysat, fed the dog, and listened to me when it all was just too much.They are the ones who really knew what a celebration this day was!

They are the ones that mattered.

He is what mattered.

Micah's sugar dropped really low right in the middle of the party. So we rushed to get a cupcake in front of him. And everyone stared knowing that this kid eats NOTHING by mouth. A few months ago, he wouldn't even let you touch the area around his mouth because of his severe oral aversion.

Then he did this.

And the Father reminded us all again that He is faithful and His ways are perfect. What HE says about Micah, is what matters. We were honored to celebrate Micah yesterday. But really we were celebrating a very faithful Father who has carried us through a year of hard, really really hard. And today we are up on the mountain top shouting of His goodness and thanking Him that He brings beauty from ashes. 

I Am His

"I barely know You, take me deeper."

I've prayed this prayer everyday for the last three years. And every time those words flow out of my heart, I realize I've barely scratched the surface of all there is to Him. Each season, both the hard and beautiful, bring to light a new side of Him. A side, a lifetime of knowing Him, I've never seen. The second He satisfies me with all of Him, I am left aching, hungry to know Him more. He is not the God many of us have grown up hearing about in black and white. He has colors. Lots of them. And they are beautiful. At least the ones I've seen.

The closer He pulls me to Himself, the more I'm realizing I only have a sliver of understanding of His love for me. God is love. I know this. I've heard this my whole life. I've sang it, said it, doubted it, and believed it. But this is the kind of Love that is relentless. This Love that I've barely tasted is furious, crazy, unbelievable, and pursuing.

I realize the more I'm beginning to understand His love for me, the sad reality that I don't truly know how to love others. At least not the way He loves them. I'm just coming out of a season where He asked me to "

close the door, and fall in love

." And during that time in the secret with Him, He begin to take away misunderstandings I had about Him, and replace those with Truths.

I have two adopted children. I understand, first hand, the process of them being fatherless, to having the best daddy in the world. I know the hours of paperwork we completed. The financial sacrifices we made so they could join our family. The process of them coming home to us was hard and painful. Our story is one of brokenness. We had experienced loss and our children and their birth mom have too. But the days we each declared to the court that we would love them and take care of them forever, are the most special.

Because those are the days they became mine.

I get this about my children. But so often when life gets hard, or life is easy, and I'm moseying around on my own, I forget this about myself. I forget that

I belong to the Father

. I am His. He has adopted me into His family, calling me daughter. He has given me an eternal inheritance. Once an enemy, an orphan, now His. He sacrificed so much bringing me into His family. And sometimes I live as if I don't know who I am, Whose I am.

I am His kid, and He is crazy in love with me. Zephaniah 3:17 says He sings over me. Psalm 139 says that His thoughts about me are more numerous than the sand on the beach. He knows intimately every detail of my life. I no longer a slave to anything, but it's His blood that runs through my veins now. Because He's my Daddy, and I belong to Him.

Every time I walk into a doctor appointment for Micah, I pray that the words they say or label him with will never stick. You know the children's book,

You Are Special

, by Max Lucado? The little girl in the story is different from all the other wooden people in the town. They all walk around sticking dots or stars on each other. Either stars because they're beautiful or good at things, or dots because they're ugly and no one likes them. But the little girl doesn't have any dots or stars, because they never stick. She spends time every day with the Carpenter who made her, so when the wooden people try to put dots on her, or stars, they fall off. She knows who she is.

I pray each doctor appointment that those dots fall off. They don't stick on Micah. Because that's not really who he is. He is loved, cherished, adored, and is created for amazing things. He's my son and his daddy and I will always love him.

Micah had a MRI about a month ago that came back abnormal. We had initially been told he had a large amount of fluid in his brain, they label this hydrocephalous. He was going to have brain surgery, so a shunt could be implanted to drain out the fluid. This was the reason, or so we thought, why he has so much trouble eating. The pressure was building up, causing him to have severe vomiting, therefore causing his oral aversion and need for a GJ tube with continuous feeds.

We were referred to a pediatric neurosurgeon to discuss the shunt and surgery date. I prayed in the waiting room, like I do every time, "Lord, don't let this one stick. It's what he has, not who he is." We waited for two hours with a ten month old. We played with everything that we couldn't take off the walls, and we even started crumpling up the paper on the table and made balls to throw. We've found ourselves in this situation more times than I can count.

The doctor finally came in. He started talking and like always, I look to my husband for translation. And then I heard it...CP.

"Wait, hold on, why are you talking about cerebral palsy when he needs a shunt?" He said something about fluid and white matter and sausage links, clearly I have no medical training. And I said again, "What exactly are you telling us? I'm his mom, just tell me so I can understand."

And he did.

"He doesn't need a shunt. The extra fluid in his brain is where the white matter didn't develop. He has cerebral palsy. It's too early right now to determine what type, or how severe it will be." He was kind, that doctor. But his words stung so deep. I looked at my sweet boy, who has already spent the majority of his life fighting, and realized the rest of his life wouldn't look much different.

We went in that office with a plan to fix everything. Now it was a scary plan, but the shunt would fix the pressure that would help the vomiting that would allow him to medically eat. We left that office with a diagnosis that would last a lifetime, only complicating everything. We got into the car, and I had to ask my husband if he was sure of what we heard the doctor said. Did he really tell us that?

It's the initial shock, that first blow, that's so hard. And then the string of questions without answers that follow. Those are painful too.

We do know this explains a lot. At least we have a reason now for the "unrelated" issues Micah bravely fights each day. We also know that his isn't severe. We're hopeful he'll walk, and have been told the part of the brain that is injured doesn't hinder his cognitive development. But it also has everything to do with why he has never been able to eat and why his speech is so delayed. But we're going to keep plugging away with therapy, and

I still believe

I'll watch my son sit at the table with us and enjoy a meal.

He might fall a lot more than most kids, he might have extra scars, but we'll be there every single time he falls.

And we'll teach him how to get back up.

We'll be there with his number on our shirts in the stands, screaming louder than all the other parents, because this boy's dots don't stick. He might never be the MVP, but he will always be in our family. He's always been a fighter. He's spunky and he'll need that later, I'm sure. We'll have to learn how to balance protecting him and pushing him. It will be hard some days. And just like I have grieved so much of his future over the last week, I'm sure there will be moments when I grieve for him again. But this doesn't change anything. Just slightly our expectations.

Because I know who I am. I know Whose I am. In the secret, behind closed doors, I have learned I am Dad's kid. His love for me is wild. He knows every detail of my life, and I can trust Him. Because He is a good Father. And just like He loves me, He loves Micah more than I could even dare. He perfectly formed him. He has written out all the days of his precious life.

And He is writing a story. A story that shows weakness, but the strength of the Father. It's a story of beauty from ashes. A story declaring the glory of the Lord. And Micah gets to walk in that.

He will walk.

What I want my children to know more than anything else in this life, is Whose they are. And I want them to live in that identity. When we begin to grasp that we belong to Father, a good Father, our lives drastically change. Bad news is still painful, but those facts beat up against a wall of Hope.

Him.

When we know Who we belong to, even in the beautiful days of our lives, we find Him to be the most beautiful. When we know Who we belong to, our circumstances might change, but He is always the constant.

I'm praying this for you and me today. I'm praying the more we know the Father, the more we spend time with Him, nothing sticks to us, except what He says about us. And He says we are worth fighting for, we are loved relentlessly, we are passionately pursued, and He delights in us.

We can trust Him. Because we belong to Him.

We are His.

*All photos by

Rachel Ackerman Photography

.*

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.