You walked into his hospital room with your bags (the ones we would know so well), pulled out your big notebook, and started a file with his name at the top. We had been in the hospital for a week at that point, and it was our fourth hospital trip in two months. I was running off of machine coffee and no sleep. The most exciting time of our day was when the helicopter landed on the pad outside of Micah's room. So when you walked in with your bags and notebook, hope followed you through the door.Read More
The summer sun is out to stay, until a little shower pops up to water our gardens. Kids are out of school and running between our houses barefoot in my neighborhood. I hear laughter and basketballs bouncing right up until the time the sun meets the horizon and passes her duty off to the moon. The neighbors across the street keep their floats on the porch for easy access because you can find them at the pool everyday. Summer is finally here.
Last year this time, we had just brought home our second child through adoption. I can still see his squishy newborn face and wrinkled old man skin. His big sister was only 16 months old and conveniently decided after months of therapy she was ready to walk when we brought him home. My husband had just taken a new job and was working nights in the NICU. So it was me all day and all night with two under two. And some days it was just too much.
I knew immediately that something was wrong with my little man. By the time he was two weeks old I was already syringe feeding him and counting wet diapers. He screamed ALL THE TIME. Not like colic, but like something was really wrong. The kind of thing only a mama’s heart knows.
I was in the trenches of spit up, screaming, bottles, diapers, toddler messes, and tantrums. The baby would only sleep for 30 minutes at a time so to say I was tired was an understatement. The toddler was like a tiny tornado whirling around my house at all times. My body was exhausted. My heart was weary. I barely had time to shower, much less spend time with Jesus. My time with Him was more of a desperate cry here and a feeble prayer there. I felt like there would be no end.
When I shared my desperation, it was always met with “It won’t always be this way. Savor every second.” So not only was I feeling utterly desperate, completely defeated, but then I was feeling guilty because I wasn’t enjoying this season of our lives. How could I? I was praying for him to grow bigger and wishing for the next month to pass.
The doctors finally realized it wasn’t colic. After six hospital stays and among many, a diagnosis of failure to thrive, everyone listened to me. A few months, more hospital stays, and several surgeries later my son got a GJ tube and is growing beautifully now with our newest diagnosis of cerebral palsy. We still have frequent hospital stays, lots of therapy, and a road of challenges to overcome, but we are better. I am no longer living in that desperation every moment of every day. It was only for a season.
Yesterday my husband carried our two year old out of Target kicking and screaming like a sack of potatoes under his arm. She had already sat in time-out twice (in Target). I’m sure like you, time-out can be found in any place we go these days. I chuckled to myself as I watched all of Target’s loyal customers quickly turn their heads to get a look at this unruly toddler. I pushed our buggy (that’s what we call carts in the south), with my son in the front like we had no idea who they were.
He took her to the car so she could be contained in a small area. Then it hit me as I put a box of diapers in our buggy, that in a few months we will probably be carrying him out of stores kicking and screaming because he couldn’t run around the store like a wild horse. And it terrified me.
My husband and I both agreed it wasn’t our best parenting day. So we got a babysitter, went to a wedding, and promised to try again tomorrow. And that’s what we did.
A friend at church reminded me this morning that it is just a stage. It won’t be like this forever. And she didn’t say it in a way that made me feel guilty. She knew.
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.