First off, I know that there is nothing I could have done that would change our current situation. For me, that is probably a good thing because the guilt I feel is overwhelming at times even when I know PRS (Pierre Robin Sequence) is not my fault. Even so, I feel that I need to write this in order to begin to work past the guilt that I feel.
I’m sorry that I carried you in my womb for so long and had no idea there was anything wrong. I didn’t know about your tiny little chin or the Pierre Robin Sequence. I’m sorry that when you were born, I jokingly told you I loved you, but was mad at you for taking so long to get here. I was so happy to finally have you in my arms. I thought the hard part was over for both of us. I am sarcastic by nature but I would have never said that if I had known what we would face together.
I’m sorry that I had to let them take you away so soon. I’m sorry that we didn’t get to snuggle and I didn’t get to count your fingers and toes and breathe in your scent. I’m sorry that we positioned you on your back not knowing that was hard for you. I’m sorry that I didn’t see you again until you were over 24 hours old. I’m sorry that I had to leave you every day for the next 19 days. I’m sorry that you didn’t get to sleep in my arms. I’m sorry that I could not sit in the NICU 24 hours a day just to be near you. I’m sorry that for several weeks I didn’t even know your correct birth weight because everything happened so quickly.
I’m sorry that you had to go through surgery at 9 days old. I’m sorry that that it was it took to get you home. I’m sorry that you were hooked to wires, feeding tubes, and a ventilator. I’m sorry that I had to let them make multiple incisions just so you could eat and breathe. I’m sorry those things don’t come naturally for you. I’m sorry that Pierre Robin Sequence took that away from you. I’m sorry that you have to work so hard each and every day. I’m sorry that I cannot help you keep your feeds down.
I’m sorry that some days you watch me as I cry over your crib. I’m sorry that some days- most days- I’m not strong enough to get through without crying. I am so thankful for you. You are my little sunshine and I don’t cry for me. I cry because it hurts to watch you hurt. It hurts that I can’t hear sounds when your mouth pouts up and your tears fall. I know you are crying and I’m sorry that I can’t hear you. I’m sorry that when you are happy, I don’t know if you are cooing at me.
As sorry as I am for all you have gone through and all you are facing, I am not sorry that I am your mommy. I wouldn’t change that for the world. I only wish that I could take this all away. If I could take your scars and all of your hurt, I would in a heartbeat.
If a mother’s love was enough to heal her child, you would be healed instantly. I’m sorry my love can’t make you all better. I nurse my guilt by dressing you up in pretty clothes. I don’t know why, but it makes me feel better and you seem to like it. I only hope that one day you understand even half of the fierceness of my love for you, Brynlee.