My Noelle, my sweet baby girl.

I just can’t even begin to comprehend how I have survived a year without my daughter. Looking back over this past year, there were so many moments where I felt so stuck, like life was never going to continue on. And here I am and it has… but it makes me so sad that it has continued on without my baby. It’s not fair that she didn’t get to live more than 32 minutes. It’s not fair that I can’t dress her up in a pretty dress and be amazed at all the ways she has grown in the past year.

All I want to do today is hold her. All I want to do is turn back the clock to a year ago and have something go differently. I wish I could have gotten up off that OR table and done the compressions myself. I wonder if I didn’t walk around as much in the week leading up to her passing, would she still be here?????

And I know as I sit here and have all these thoughts run through my head for the millionth time, that Noelle’s short life has had and will have a profound impact that I am just beginning to see. My future children would not be the same. This little blessing that I am carrying now would not be with me if Noelle were still here.

Today we incorporated “Noelle’s Light," a non-profit we are starting in honor of Noelle. Its mission is to financially support families carrying a fetus with a life threatening diagnosis. I pray that we can help even just one family obtain the best medical care for their child and I pray that care allows for even just one more baby to make it home from the hospital. Noelle’s short life not only altered the course of my family but potentially many more families who will be helped through this organization.

This past Friday, my husband and I went back to CHOP. We did the same drive that had become second nature to us this time last year. We walked the halls where we had our surgeries and we passed the room where we held our baby girl. We reunited with the incredible staff there that made our time with our daughter so special. It was a challenging visit to say the least, but made our hearts feel that much closer to Noelle. The staff embraced us and made us feel at home. That hospital was Noelle’s home for a short time. It is where we saw her sweet face on all those ultrasounds. Where we fought to save her. Where we held her.

We have ornaments with her footprints on them that were made at the hospital that we cherish and that we will hang on our tree every year. We donated ornaments to the unit in Noelle’s honor so that other families will be able to create this special memento with their babies. This is one of the many ways we hope to keep her spirit alive in us forever.

Who knows where we will be a year from now. But I do know that just because I can’t physically hug Noelle today, she is with me in all I do and all I am. I know that she will inspire me to be a better person everyday. She will inspire me to be the best Mom I can be. She will remind her siblings that life is a gift. She will live in this household through us forever. Her tree will shine brightly this Christmas and every Christmas to come. It will remind us that her light is shining in heaven and to hold onto the hope of heaven, the hope of reuniting. Although the passage of time makes my heart ache because she is missing, one year without her means one year closer to her.

I do wonder what today might look like if my Noelle were by my side, crawling (maybe walking!) around the house. But as I sit here and smell her cake baking in the oven, I am all too aware that she won’t taste it. But we will eat a slice for her, in honor of her short life and in celebration of the impact she continues to make on this world. I am so proud of her. I am so honored to be her Mother.

Happy First Birthday in heaven, my sunshine. I will make your Christmas tree shine brightly here on earth, reminding us of the beautiful home you have in Heaven. You are loved more than words could ever express. Sending so many hugs and kisses your way and squeezing your blanket extra tight today.