You are two weeks old today. As I write this, it is almost to the hour you were born. I remember the agony my body was in as I prepared to birth you, and the agony my heart was in in knowing what meeting you for the first time would mean: I wouldn't be able to protect you anymore. I wouldn't be able to keep you safe as I had for the previous 37 weeks, and I wouldn't be with you anymore -- not in the same way. I knew I would miss your movements: the kicks and punches that were evidence of your life.
I was mentally prepared for what would come: I cherished the minute that they placed you on my chest and I held you, studying your face, looking deep into your eyes. I knew you. I recognized you. I like to think you recognized me, too.
And then they had to take you away.
Even as I have no regrets in choosing to bring you into this world, I hate what you have suffered on account of it. In your fourteen days on this earth, you've suffered more than most people I know who have lived many years. None of it is fair, and I won't try and explain that away. Your dad and I have suffered watching you endure all you have: multiple invasive procedures, an open chest, tubes running in and out of you, and our absence. I think even the most hardened person would have to agree: this is not how it's supposed to be.
I spent a good hour or more with you this morning. I had just finished pumping and I went down to see you. I had no questions for the nurses, though they did tell me you had behaved well and had wakeful periods through the night. I was more interested in feeling the hair on your head, in studying the sweet softness of your fingers and toes. There isn't much of you I can touch, but where I can, I do. I hope you know how much you are loved, how I would do anything to make you well, how much I wish I could just give you my own heart to make you well. I know I wouldn't hesitate.
Your dad and I are doing the best we can. We know we need our rest to make good decisions for you, and yet it is so hard to leave your side, especially when you open your eyes and look at us. We want ours to be the faces you see.
None of us knows what will happen in the coming days and weeks. We are fighting hard for you, advocating for you and probably annoying a lot of people in the process. And that's okay because this is to do with your life and it's worth it to ruffle some feathers and be not liked in the process -- I can't stand the thought of wondering later on if things could have been different had we not been too worried about being compliant and polite. We are the people you came from, so don't you worry about being compliant or polite either. Don't be afraid to surprise people with how well you can do, and don't be afraid to make a big stink if that's what you have to do.
All that being said, your dad and I recognize what a delicate and tenuous situation this is. Minute by minute, life here in the CICU is unpredictable at best. We desperately seek your well-being and are ready to take you home and wrap you in all the love we have the minute we can. But please know, dear one, that if you need to go Home, that's okay too. You've been baptized and anointed, you are our son and our brother. And though a baby, you have had a powerful impact on so many -- your broken heart has reached so many others. You might not even know it, but you are changing the world and we are so proud.
I pray for you, sweet baby. I pray that angels whisper in your ear how much you are loved, and I pray that you feel safe and protected. I pray that you can feel their kisses since we cannot kiss you. We know you continue to fight, and we will continue to fight for you. Sweet baby boy, you have stolen my heart. It will never be the same.
All the love in the world,