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.

Wednesday, February 29, 2012

Sunday, January 22, 2012

Moving On

2011, no doubt, was a tough year. It's all still quite fresh in my mind. But, 2011 is over and 2012 has begun. A year of new beginnings. Beginning a year with a nice fresh start as a mother to an angel baby. Another year to become a better mother to the two precious boys that I have been blessed with and to welcome yet another daughter into our little family. Another year to become more of the woman that I long to become.

Losing a baby was the hardest thing I have had to go through in my life so far. It is not something that I would wish on anyone. If it were to happen to anyone I know, oh how my heart would weep for them because I know how hard it is. But I really feel that I am a better woman for having been through this experience. Not a perfect woman, far from that, but a better one. I know that a HUGE reason why I was able to get through this experience without falling into a pit of despair was because of prayer. My own, but I think even more, the prayers of others. I know that my Heavenly Father was been with me on this journey every step of the way and often times He carried me through. He is there for us whenever we need Him, but most especially when our hearts our broken and we just don't feel that we can't do anything more. I am grateful for the lessons I have learned. I am grateful that this experience has made me even more sure that there is a Heavenly Father, and He does love us, and He will and wants to help us, and He knows all of us so, so personally.

And now I bring a close to this little blog dedicated to my daughter Luisa, my angel baby girl. The journey isn't over, it isn't the end. But I think that I have said and recorded all that needs to be on here. Thank you for reading. My heart goes out to you with the sincerest sympathy if you are reading this because you are going through a similar experience.

Luisa's Song

Brought such joy and love so bright
Filling her parent's hearts with delight
There's not doubt where this brilliant soul will go.
Not restrained to this earth below.
To perfection with the Creator above,
With some tears we send our wishes and love
But with a cheer we hope to see
You in Heaven with our Savior from Galillee.

-written by Uncle Daniel Bowman ( my brother ), December 29, 2010

Wednesday, January 11, 2012

Remembering January 11th

The hardest thing about today is that I am not in Salt Lake City to visit Luisa's grave and put flowers there myself. And that is actually a really, really hard thing for me. Every time I think about it I get tears in my eyes.
But we did do something special today.

We got four small bouquets of purple pom daisies ( I really wanted white but they didn't have any, but they were still very pretty), and we went and visited a cemetery here in the area. We put three on some sweet little baby graves that didn't have any flowers on them, and in my head I imagined how grateful and happy I would feel if someone, even a stranger, would put some flowers on Luisa's grave. And then we put one on the grave of a wife, and mother, and friend that passed away 6 months ago. In memory of Luisa, from one family who has dealt with the difficulty of a loss to another. Although the losses are different, and the circumstances are different, a loss is a loss and is a very hard thing to go through. The bouquets were really pretty. I explained what I was doing and why to the florist and she was so good to take her time and make them look really nice even though she was so busy. I really appreciated that. And the boys were uncharacteristically cooperative. So it really was a pleasant outing.
When we arrived back from our trip to Utah someone had left this on our door.

It was actually two someone's and it was such a pretty, and welcome surprise.

So the time of hard anniversaries are over. Of course they'll come again in a year, but the first ones, I imagine, are the hardest. I am so grateful for my Heavenly Father who has so kindly blessed me with sweet feelings of peace and love throughout this time. I am also so grateful for the love and kindness shown to me from our family and some dear friends. Everything that you did or said, and quite possibly prayed for helped, so much. Thank you. I am also grateful to be blessed with the opportunity to be a mother. Oh, its a challenge and some days I don't like it all that much, but I am grateful to be one. It is an honor. And every child that is here with us is SUCH a miracle. Really and truly. That is something very important that I have learned with this whole experience of losing a child. I hope that anyone going through a trial as difficult as this one may be blessed with the same things that I have been blessed with to help you through. And if you need some help, don't be afraid to reach out and let others know. There are times when challenges are just too big and too much to go it alone. And I know that this is one that I could not have gone through alone. My love to all that has been there for me and my deepest, sincerest sympathies to any who may be going through something similar.

Sunday, January 8, 2012

Welcoming a New Year, December 31,2011 to January 1, 2012

On December 31, 2010 I was at the lowest I had been in a long long time. I felt so dejected, so numb, and forgotten. It was a horrible place to be. I completely forgot that it was New Years Eve, a time of merriment and fun for a lot of people. I was at the very opposite of the spectrum. At the convincing of my In-Laws that we really needed to get out, we did catch a late movie and it did help lift my mood a bit. The clock struck 12 I think as we walked in the door and minutes later the call finally came from the hospital letting us know that they could admit us. Finally. I was so mad at that hospital then. I almost hated them. But, they completely redeemed themselves with their great, compassionate care.
This year had to be different, but I wasn't quite sure what to do. And somehow in my thinking I came up with the idea of bringing in this New Year, and commemorating one year since Luisa's birth with butterflies. I contacted all of my family and most of my close friends and invited them all to join us in celebrating a new beginning and remember a short but sweet life by wearing butterflies. And, let me tell you, having my friends and family join us in this simple activity lifted my spirits so much. It was so beautiful to me. It made me so happy. It really helped to turn bitter into sweet. I really don't know why though, but it really, really did.

One of my sister in laws also gave us butterfly manicures and pedicures. I loved it!

And then my sweet friends back in Arizona ( because we were in Utah at the time ) also participated and sent me their pictures.
I really cannot tell you how much it touched me to have as many people as I did participate. It was the best way to end a difficult year and begin a year full of promise. Thank you so much my friends, my family, for obliging my simple request that lifted my heart so much.
Just a note, in case you don't know or have forgotten, butterflies are special to me because the hospital that we delivered Luisa at put a paper butterfly on our door for our stay there to let the staff know that we were delivering a still baby to use extra care and sensitivity. And I know that other hospitals do it, I'm not sure if every one does though, but in the baby loss community you can often see Mom's who have lost a baby at anytime referred to as Butterfly Mommies.
So this Butterfly Mommy was so grateful for the support and demonstration of love from so many people around me. Thank you again.

Sunday, January 1, 2012

Remembering December 29 and December 30.

Last year on December 29, we were at an ultrasound looking at Luisa's lifeless body on the screen. I was dreading this day this year because I was afraid or anxious about what emotions would come out. Because I remember quite clearly what I was feeling a year ago on this day, and heartbreak just doesn't seem to illustrate the pain and loss enough. This year, I felt bound and determined to do whatever I could to make this a special and peaceful day, one where I would feel some sort of sadness, but where I would be able to also feel, and even more than the sadness, a Spirit of Love, and gratitude, along with peace. And I accomplished that goal.
My husband and I were married on December 30. A year ago, that anniversary was almost completely overshadowed by the sad events that were taking place. So this year, to make up for it and really celebrate being together for 5 years, we had a little 3 day,2 night getaway. So on the 29th, I woke up in a cute little cabin in the mountains with a fire glowing in the fireplace. And I knew that the day would include everything that I had desired. We spent the day in Salt Lake City by the temple. We were married in the Salt Lake City LDS temple. It is a place that is beyond beautiful, and the spirit that is there was beyond beautiful. If you are ever in Salt Lake City, you MUST visit Temple Square, which is where the temple is located. You will not be allowed inside the temple unless you are a member of the LDS church that holds a temple recommend, but you still will be impressed by the beauty and spirit of this wonderful place and all that it signifies. The main reason why we chose to be married in the temple is because in the church that I belong to we believe that families can be together forever. Yes, forever. We believe that there is much more than just this life. We believe in Eternity. And we believe the special ordinances that happen in the temple will seal us forever with our families. So, being there on the day when we knew that our daughter had left this earth was special, because being there at the temple which for me symbolizes a Forever Family was so, so comforting, and I felt happy, even on this day that was such a terribly sad day for me a year ago.

December 30, our anniversary, we woke up in a pyramid. Well, a room made to look like a pyramid at the Anniversary Inn. We took our time getting ready and then visited the cemetery to see the grave once more and put a pretty bouquet with pink and white daisies. I LOVED that bouquet. I love that cemetery. It is such a peaceful, beautiful place. The feelings that I felt on December 30 2011, were soooooo different than those I felt on the same day in 2010. A year ago, I felt so low and dejected and numb, which in my opinion, I think it is worse to feel numb emotionally than to feel pain. It was a horrible place to be in. But on this day, in 2011, I did feel a little sad, tears stung my eyes a bit, but I could not help but feel peace and love. I am so grateful for my Heavenly Father who blesses me with these emotional gifts.

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.