You were still in my arms on this day last year...

Looking back to this day last year, I can't help but dwell on all my regrets. Although your health was failing miserably at this point, I didn't know it would be the last full day that I'd hold you in my arms and look into your eyes. The last full day that I'd be a mother to you while you were alive. I wish I would've kissed you more, but I think I held back too much because of my fear of all the 'germ' NICU rules. I washed my hands and used hand sanitizer fanitically every time before I touched you (and again every time after I touched something else,) and there were days your daddy and I wore masks all day when we probably didn't even need them, for fear of spreading germs to you and making you sick. Yes, I spent these past fifteen days holding you and doing kangaroo care with you on my bare chest, but I wish I would've kissed you more. I remember kissing you alot once you died, after the nurses helped us quickly remove all your wires and tubes, but once I touched my lips to the top of your head and felt the warmth of your life leaving your body it was too much for me to handle.

I had a feeling that this would be the last night you would live. I didn't want to admit it, but things were changing quickly and I could sense it. I made sure that we stayed close to you that night. Even the two-block walk to the Ronald McDonald House was too far, so the nurses suggested that we use the emergency parent room to sleep in that night. We stayed in the NICU with you that night until really late. The nurses bought us coffee and we chatted. I took lots of picures, because I sensed the urgency. I suffered while I watched you struggle, and agreed to an increase of morphine for you as per our palliative care plan. Your heart couldn't take much more and in turn your breathing became very umcomfortable. I have never felt so helpless in my entire life. I've never felt so tortured, sitting there waiting for the inevitable to happen.

Your daddy and I eventually wandered over, reluctantly, to the parent room when get began to go cross-eyed from the lack of sleep. I think we managed to doze off for a couple of hours before being awoke by the ringing phone. A sound I will never forget. We answered it and our nurse was on the other end. She told us that you'd been experiencing an apnea episode again and that your heart rhythm and rate was very irregular. We scrambled to get out of bed and ran into the unit. By then, you began to breathe again but your heart rate was still very concerning as it would
suddenly drop and eventually recover. Our nurse knew that my birthday was two days away, so you and her had made me a birthday card while daddy and I had been sleeping. Your little footprints were stamped inside, and there was a note from you thanking me for being the best mommy in the world. I cried, and the tears just would not stop... I did not feel like the best mommy in the world when there was nothing I could do to help you. I think this is something I will struggle with forever.

As the sun came up on April 10th, which also happened to be Good Friday, you slipped away quickly in my arms. Even if you can see it coming, you can never prepare yourself for it. I didn't know what to do with myself. I invisioned myself being dragged out of there in a straight-jacket, hysterical and losing my mind. Your daddy and I took turns holding you and admiring your face without the CPAP mask covering your delicate features. I remember looking down at you as I held you against my chest and brushing my fingers over your eyes to close them completely. Our nurse helped us clip a lock of your hair from the back of your head, which was so incredibly long and a beautiful shade of brown unlike your sister's, who has the blondest of blonde hair.

We kissed you and held you and poured our tears onto you for a few hours before we began to gather your posessions and stack them into a cardboard box, where they still remain. Our nurse both sat with us quietly and comforted us while we breathed you in, and gave us the time alone with you that we needed. Eventually, she had to ask us information about funeral homes and other such things that made my head spin and the tears flow even faster and harder. Thankfully your daddy was able to handle the reality of this better than I was, and he made those arrangements. I still had a huge bag of expressed breastmilk in the NICU freezer which we would have to return for. All I wanted to do was go back to the Ronald McDonald House and take one of my sleeping pills that I had been prescribed a few days before, and sleep. So, that's what we did. We began the agonizing journey out of the NICU, carrying your things, without you. How did I find it in me to leave you behind? How did I turn and walk away? I think if I had to do it again, I would still be there holding you. I would never let go, knowing it would be the last time I would see you.

Upon arriving back at our room, I fell into the bed and did the only thing my body would allow me to do. Sleep. It would be the beginning of many weeks and months that sleep would be my refuge, my only way of coping when the alternative would be an absolute and complete breakdown. The sleeping pills which for a few months would become my only way of escaping into that sanctuary of sleep. What a long road, from there to here - the descent into life, without you.

After a couple of hours of sleep, we woke up and somehow went into 'auto-pilot' mode, packing up our bags and tidying our room which had become our comfortable home away from home. I don't remember much, other than the complete and utter disbelief of what had happened. The weight of the world on my chest. The dread of returning home without you, and having to explain to your sisters that you would not be coming home. Having to see all your clothes and cloth diapers that were washed and waiting for you. Not knowing if I would be able to survive each agonizing second without you. Having to face planning a funeral for my daughter - it was all just too much.

I seriously don't know how a year has come and gone, or how I've made it to this point. The reality of life without you is often so overwhelming that it knocks the wind out of me. I didn't know I could miss someone so much, and love so deeply. It's hard to believe that when I wake up tomorrow morning, we'll have come full circle.

I miss you, Freja.