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