The Reason

This blog was started as a way for me to record our, my daughter Luisa and our family's, journey with Amniotic Band Syndrome that presented itself on the head of our sweet daughter. And has turned into a journey of dealing with a fatal prognosis, and the very premature death of our sweet baby. My great hope is that we might be able to help at least someone, if not more, by sharing this experience.

Tuesday, December 27, 2011

Christmas Let Down

Yesterday I woke up groggy, and cranky. And I thought to myself, "What is my problem?" As I got in the shower and started thinking about Christmas and what a great Christmas it was and all of the days leading up to Christmas and how much I really enjoyed it all, I realized that I was cranky because I was suffering from Christmas let down. Last year, the holiday season was hard. I was trying to stay positive and have good holiday cheer, and really, for the most part, I was successful, but it took conscious effort. A lot of it. This year, I think I really wanted to make up for the things that we missed out on, or that I missed and I just threw myself into this holiday season with more crazy black friday shopping than I have ever done in my life, tons and tons of baking, and making homemade gifts like a mad woman. All things that I love doing every year, but this year I did them with reckless abandon and I LOVED IT! And then watching my boys on Christmas day, the happiness, oh it was wonderful. And then unwrapping a gift, the first gift, to Karina (our new little girl joining our family in May) brought tears of joy to my eyes. So then waking up on Monday was a big bummer because I felt like I now have nothing to look forward to but a big fat ominous black date, December 29. And the three days that follow it. For December 29, 2010 and the days following were some of the worst in my life. And then I cried. I sat down in that bathroom and cried. I cried for the pain that I went through last year, and I cried for the loss and I cried for this upcoming anniversary. Then I went on with my day, and at the end of the day I was so exhausted and worn out, and I cried again for the same things. And then my husband came back to our room, and we talked, and we held each other and I fell asleep and I woke up this morning feeling quite better. I don't feel the black ominous date of December 29 looming at me like it was yesterday. But it is definitely on my mind. I can't keep the memories of what I was doing on this day last year, and how I was feeling on this day last year, out. So I don't. I just let them come and feel a pang of sadness within myself. I think its good to feel emotions unreserved at times. I don't think its good to get lost in them or let them consume you, but I do think its good to just let them come. I think avoiding them or hiding or burying them is, in a way, being dishonest with yourself. So I let them come but almost always, accompanying those difficult emotions I have the thoughts and rememberances of beautiful and good things, things to be very grateful for. So this is how I am doing today.

Saturday, December 24, 2011

Merry Christmas

This morning we went to the cemetery to visit Luisa's grave. We are up in Utah for the holidays. It was a beautiful day and a beautiful way to start our Christmas Eve. We bought her a little white Christmas tree and decorated it with bright pink ornaments and a bright pink butterfly on top. I love it. Looking at it makes me happy. Its cheerful. The butterfly is significant to baby-loss Moms because many hospitals, including the one I delivered Luisa at, put a paper butterfly on your hospital room door when you are there going through that difficult trial, as a symbol to the other hospital staff to be sensitive and respectful. That"s why, in the baby loss community, many baby loss Moms are referred to as Butterfly Mommys. I feel happy to be a Butterfly Mommy today. Of course, I don't ever want to be in a position to bury a child again, I feel such peace today. And I am grateful for that. I would hate to spend my holidays depressed and miserable.
Like I said, the cemetery was beautiful. My husband and I are very impressed with how decorated the cemetery was. There were tons of wreaths and poinsettias and mini Christmas trees, and even a few large Christmas trees, spread all through out the cemetery. And as I looked around, I felt a sweet strong feeling of love. I felt love for my Luisa, and my husband and my boys and the new little girl in my womb, Karina. And I felt love all around me. The love that other families had for their loved ones that had passed on. Beautiful it was. The tears came, but they were brought on by the Spirit of Love that was there, not by sadness.