Dear Nani,

You have been the child I could not put down.

I remember what it felt like to hold you for the first time. Exactly what it felt like, as though I am still holding you.

I remember holding your sisters for the first time, but I don’t have the sensation they are still in my arms. I started letting them go, bit by bit, over the years as they grew more independent. As they needed less of me. As it should be. But Nani, you have never needed less of me. You needed all of me and then some.

It was just you and me in the room that first afternoon together. I held you on my shoulder and only hours old you seemed to be trying to lift your head from my shoulder. I thought you incredibly strong. I didn’t yet know about sensory defensiveness or rigidity from brain damage. What I didn’t yet know that day would fill a book.

All these years. Almost 34. Still holding you.

But here we are, and it’s time for me to lay you down. You’re moving in 2 weeks to a group  home. A day I’ve known was coming since we began receiving the most serious of your diagnoses. A day I’ve dreaded and been unable to face emotionally for a long time. Some things you can’t truly face until they come to pass.

For a long time, I’ve felt as though in order to act in your best interest, I was forced to abandon you. Not being able to explain to you what is happening is hard. Sick in the pit of my stomach hard. I know this will be terrifying for you. You won’t understand where we have all gone, and why you are not going home with us. You will be homesick and I will not be able to console you. You can’t call me like your sisters did from college.

But I no longer feel like I am abandoning you. As hard as this will be on you and me,  I know this is right. This may be my fiercest moment as your mother. I’m preparing for the day when I will no longer be here. Now, while I can do it carefully and thoughtfully. Now, while I can help you transition. Now, while I’m still here to help translate all your needs and wants. Now, while it is intentional and not emergent.

Nani, I wish you could know how carefully I have planned. How exacting my standards have been and will be. I wish you could know I will still have your back. I wish you could know I will be watching and praying like never before. I even wish you knew how people don’t like to cross me when it comes to you. (Truthfully darlin’, they don’t like to cross me for any reason, but even more so where you are concerned.)

But you can’t know all those things, so I will rely on the someone who is able to speak to you in ways I cannot. Someone you can hear. Someone who can give you the peace He has given me-peace that passes understanding. Someone who will have your back so much more than I ever have or could.

I wish we could do it all again. Just hit re-wind. I wish this time of me taking care of you hands-on would not be over. It’s been my life. I’m not going to say it’s been easy. But after all the difficult times, I can still say it’s been my privilege. I wouldn’t have chosen this life for you, but because of you I’ve lived a life of a thousand daily graces. Admittedly, sometimes I could only see the graces in hindsight, but they were there nonetheless. I’ve learned a lot about myself, good, bad and ugly. And I’ve learned who God really is. You’ve been a great teacher.

There are so many sweet moments I will miss. Seeing you tucked into bed deep asleep. Sitting on the sofa sharing dessert with you. You smiling from ear to ear and even giggling a bit with every bite. Or how you smile when you see me at the island cooking, and you stand at my elbow with a fork in your hand, making sure I know you’re interested. I will miss how once in a blue moon you spontaneously look me in the eye and with a shy smile lean in to bounce a kiss on my mouth. And I cannot picture my Thanksgiving table without you! No one loves Thanksgiving foods more than you.

We don’t know if you will be able to come back and visit often. We just don’t know if it will be too traumatizing to go back and forth. Transitions have always been hard for you. But we are going to give it all we’ve got. You’ve surprised us before. But I promise you this, we will be together. If you can’t come to us, we will come to you.

And my good-bye to you will always be, “The Lord will bless you and keep you, Nani. His face will shine on you and give you peace.”

 

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