A Brave Little Soul

Our hospice team gave this wonderful little story to us. I would like to share it with you.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

It's been a year

I can't believe its been one year since we got our ultrasound and were told about Eva's condition. I am somewhat sentimental with dates, after all I am a woman...LOL! I mean we don't celebrate our 1st date or when he asked my mom for my hand etc.. However, I still have the 2008 calendar up in Eva's room with the "ultrasound" sticker on the date of our appointment, September 12th, I was 20 weeks and a day. Our families were all standing by to find out the sex of our little one, we were excited and anxious. We don't commemorate that date or anything but it certainly was the day that changed Jose and I forever. I just haven't been able to take it down yet.

I belong to a Yahoo group for Holoprosencephaly, it's a kind of support group. We, most of us newbies, have never met. But there is this clear sense of knowing each other, understanding each other, we worry with each other and celebrate milestones with each other. Just about every week/month there is a new member that just got a diagnosis for their baby of HPE. This month, those emails have taken me back to a year ago, I sounded just like them in my emails, looking for more answers than medical providers were giving us. There had to be more than what they were telling us. With every new member there is a repeat of the same story. I mean almost exactly. "Severe abnormalities, condition is not sustainable with life, termination is the most viable option" Although, some mothers state they haven't made the decision to terminate yet, I am of the strong belief that they have, they are seeking confirmation for what they feel, that there is more to their story. Although, Jose and I never considered termination, I know that is exactly what your instincts tell you. We are no longer in the time when the physician and his/her statements were the last word and thought. We can respectfully disagree and seek further answers and knowledge. With every new mother that comes into the group, I know that because they are seeking, they have a HoPE and a faith in them that they have yet to unlock. That's what these little babies do, they hold this key to unlock potential in us.

I look back and Jose and I were completely different people a year ago. We felt lost at times, vulnerable, like failures, we just couldn't wrap our brains around what was happening. Completely different from how we feel today! I mean we are only human and we still struggle, as I'm sure parenthood will do to anyone and we still don't know everything about tomorrow but boy are we HoPEful. Our path seems clearer everyday and our purpose more eternal. What I am confident we have figured out, is that the most important thing for us to do is never stop working at figuring it out...LOL!!

Most of our close friends and family have heard us say this, but here I am saying it out loud to the blogging world: "We want another baby, we want to have our family grow", Eva would make an amazing big sister and well we all know that Jose is a great example and well I'm a willing participant...lol! We've talked about it right after Eva was born that we wanted to try around the fall of '09 but I'll be honest as the time rolled closer it seemed a little scarier, a little crazier etc. So last month I totally thought I was pregnant and well it forced us to really see how we felt and thought about another baby, no longer in theory. Well, I currently am not pregnant but after last month we are more sure than ever that we want another baby. Eva has also confirmed that she has many pearls of wisdom to share with a little brother or sister!

What will next year bring?

Eva's shower

First of all I want to recognize my wonderful big sister (and her hubby who has always worked as her side kick in party planning) Cata and my best friend Siovhan. While Siovhan was taking some time off of work to come to Tucson from Seattle, she also took time to help get Eva's shower together as well as hosting all the games for the party. I know that time is precious and my very busy friend, mother of 2 and a lawyer with a new practice took some of that precious time and dedicated to Eva and I, we are so grateful! Siovhan did not work alone, as a matter of fact she worked as the "assistant/co-party planner" to my amazing big sister, Cata! Words can not express how appreciative and grateful Jose and I are to my sister. Most of you that know my sister know how amazing she is, she is one of the greatest examples of a mother, wife, sister and daughter. She is too modest and will probably be embarrassed for what I'm saying and for what I'm about to say but...too bad big sis! This last January, my sister (who has a very demanding job and busy family life) along with my brother Gerry (who equally has a very demanding job and busy family life) came to be with Jose and I before Eva was born. They literally got here and got to work, they cleaned, and cooked and shopped and took advantage of every minute they were here before our Evita was born. My sister Cata worked so hard to make our home ready for Eva, not knowing if she was coming home with us or not, she worked diligently! Those days before Eva was born were hard. They were full of anticipation, fear, hope and joy. I have to admit, I'm not the greatest at showing some of my emotions but it helped to have my family here to cry on there shoulders and to share my desires for my daughter. My brother and my sister really took care of Jose and I, we literally did not have to lift a finger, I can't tell you what that meant to us! In true "Cata" fashion, she did the same with Eva's shower. I commented to her one day on the phone that I was so proud of Eva and her turning 6 months, how nice it would be to have a shower. And like that my sister said, I want to help...what Cata says, Cata does, she said, "I don't think you should throw yourself a shower". As ambitious as I could be, I knew I could not do this from Utah and with our limited resources. I can not tell you how demanding both Siovhan and Cata's lives are, they both are mothers and very dedicated mothers might I add, they work full-time in very demanding careers and are dedicated to extended family (considering that they are both the oldest daughters in there families). The shower was just beautiful and I couldn't have imagined anything better than it was.

I do want to say that I have two other sisters and two brothers as well and to quite honestly they are equally giving and supportive. I remember when I was younger, I hated my birth order, I felt (as I'm sure most middle children feel) kind of forgotten. Some of you may never believe this but I was the quieter child, I kind of kept out of the way and probably whined about how I was ignored...LOL! But I can tell you now that, I am so grateful for my birth order, it is through the experiences of my siblings that I am the person I am. That I understand things the way that I do and that I know the things that I know. Because of my sisters' and brothers', marriages, parenting and life management skills I have real life advisors. I was the only one that had not had children (and boy did I wait long enough for it!). So I spent a good part of my adult life, up to now, just observing all of them.

Anyway, back to the shower. It was so touching to see good friends, especially those we do not get to see often at all or enough. I saw family that I haven't seen in years and it meant so much to me that they could all meet Eva. My wonderful friend, Maribel, that I have known since 3rd grade, made Eva a beautiful book of pictures of the shower that she gave us the next day before we headed back to Utah. It was so great to be able to show these pictures to Jose when we got back. It was so thoughtful. To be honest I wish I could just name every single person that was there and how appreciative we were for you to be there with us. But, I am also grateful for everyone that couldn't come and that sent us well wishes. In reality I just can't leave anyone out, everyone that just thinks of us or has us in there prayers we are grateful for, it was icing on the cake to be in Tucson and visit with old friends and family. Everyone's generous nature was more than I could have ever expected. Because of our generous and loving family and friends we are able to get Eva everything she needs, its all hers. No more borrowed items (which we were equally grateful for) as a matter of fact, Eva will be the one to lend her stuff, hopefully to her future brothers and sisters. I know that we will cherish and care for all the items that we were able to purchase because of everyone's generosity.

On a side note: Our trip was interesting. Eva and I got into town on a Sunday evening, I was worn out and figured it was a long trip. We had dinner with my sister Cata, who made an amazing lasagna dinner. We hung out with my brother Gerry and Isaiah. I was not feeling good but figured again, that I was just tired from the trip. Well, it ended up I got the flu the whole week I was in Arizona. Eva and I were bed-ridden for the whole week. I didn't get to visit anyone or even leave the house until Friday night when I stopped by to my cousin's birthday party for about an hour and then went back home. My poor little Eva got a little sick too and congested. We felt better for the party but needed to still rest for our flight back to Utah. Can you believe it? I haven't been home for that long in a year and I was looking forward to my little girl seeing where momma grew up! Well maybe next time! When daddy picked us up from the airport and on our way back to Provo a tree on the freeway hit our car and smashed our hood and left a dent! What luck! Anyway, we missed Daddy so much and because we were not feeling well all week, hardly spoke to him via Skype. We are so happy to be home with Jose and to be a threesome again!

I have so much more updates about what's going on with us here in Provo...I'll be back!