Stop, right now, and take a deep breath. I know how wrong things seem right now. You want to revel in the blissful euphoria that comes after having a baby, like you did with Sydney. Unfortunately, you’re too scared. I know. It doesn’t feel right, he doesn’t feel right. Something is wrong, but you don’t know exactly what. You’re right. You are going to need every last ounce of your patience, your strength and courage to get through the next three months.
Yes. Three. Full. Months. On May 11, right after Sarah’s graduation party, you will take Jack to the ER, where he will be picked up by a Cook’s Children’s plane, and taken away.
I know that’s shocking. I know you’re wondering how bad it is if they need to keep him that long. I know you’ll be aching to hold your 15-day-old baby in your arms, without the dizzying array of wires that accompany him already. I know he looks weak, and fragile, and he has you wondering if something really awful is going to happen.
It doesn’t. At least, not the soul-crushing, bleak tragedy you’re imagining. Awful things will happen, and these three months will scar you and change you like you never thought possible. Even now, a year later, thinking about the days we spent waiting for answers and solutions, fighting with doctors, feeling the loss of control from our lives, feeling the days slipping by us with no sign of an end… it brings me to tears.
You will feel lost and scared. You will eventually stop trusting anyone to tell you the truth. You will feel like a nuisance to the medical staff, even when you try your hardest to make those days comfortable and home-like for Jackson– providing his own clothes to wear, and his own linen for the bed. You will have an ache in your heart that refuses to leave, and it will be the worst pain you have ever felt in your life.
Rock Jackson. Look into his eyes. You’re there for him. When you argue with the doctors, when you make your demands known, when you force them to listen you, you’re doing it for Jackson. Be strong. Confrontation is not easy for you, but if ever there was a time to face that fear, it’s now.
Be his advocate. You and Justin are the only ones who can, and he’s going to need both of you. Fight for heart surgery, because, trust me, IT MAKES IT ALL BETTER.
Yes. Everything. Less than two weeks after surgery, he will be home. So fight for it. Demand it.
But, most of all, know this:
He turns out perfect. I’m serious. He’s here with me, a year later, and he’s thriving. He’s happy. He’s smiling and laughing. Sydney is his favorite person, and he and Oliver have a sweet boy-and-his-dog relationship already. Go figure. He eats food, and waves bye-bye, and uses his little hand to pick up his pacifier, and pull your hair. And you have changed more pee diapers than ever before, evidence that his one kidney is a rockstar. He’s FINE.
So, deep breaths. Today is May 11, and he will be discharged on August 9. You will spend those days rocking him and talking to him, binge watching A LOT of Netflix, and eating your feelings in the cafeteria. Go ahead, eat, we’ll take care of our sad pounds later (still in progress, of course, I’m not a miracle worker).
Kiss on Jack, love on him, and know you’ll both be just fine. Hang in there, mom.