For a moment I held an angel, I miss you Eva!!

As I look back at my posts, I wonder if it wasn't so much of the pregnancy but some kind of premonition that I had, that made me so emotional about Eva.  In the months before her death I felt increasingly anxious and scared, emotional all over again, just like I was when we first got Eva's diagnosis. I always attributed to my pregnancy and how all over the place my emotions were, I can't tell you how many nights I didn't sleep, how I watched her sleep.  How I got on my knees and begged the Lord for things to be different, and at times I would look at Eva and ask her how could I survive her leaving me, EVER.  It seemed that when the house was quiet I could wonder it like some lost spirit, contemplating what the future would hold for us.  It was lonely, these are not things you bring up to your friends or family, after 3 1/2 years, I think people expect that you have moved on from any of that initial pain and that the face you put forward is the one you always have on.  I had social workers, therapist, good friends, but even for me it got tiring saying how much it hurt, and so you just stop saying it.

On June 15, 2012 at about 6 am, one of my greatest fears was realized, like the day of her unplanned arrival into our lives, she departed.

I never imagined (and believe me I had imagined it, I thought I could pre-mourn my daughter's death) that Eva would be gone only a week before our move to Indiana.  I remember that morning and it haunts me, and I have prayed to replace that memory with other memories. NOT MY EVA....NOT NOW....I wanted more time, I wasn't ready, I kept telling her that, I wasn't ready.

The days after I felt like the walking dead, I just couldn't imagine how I would survive the rest of my life with this kind of pain.  I felt desperate to smell her, to touch her.  My Eva.  For almost 4 years we were inseparable, I carried her for almost 10 months and after she was born I was always with her.  I knew Eva, all about Eva.  But the Lord prepares us, I know He does.  Only a few months before, Eva stayed overnight for the first time at Peppi's House (a hospice respite home) while Jose, Vandro and I visited Indiana.  It was so hard to leave her, but they cared and loved on her the whole 4 days.  We used them two more times for a couple of overnight stays, and maybe that prepared me a little.  I had never spent a night away from Eva.  I couldn't trust anyone with Eva for that long nor could I burden someone with the "what if something happened while I was gone".  As we prepared for Eva's memorial service and went through all the awful, real life things, picking clothes, talking with the cemetery, funeral home, picking a casket etc... I was scared to face so many people with this kind of grief, both Jose and I were scared.

Like a magical gift from my Father in Heaven, I got to be with Eva one more time.  It is heart wrenching giving your child to some stranger in a hearse, someone who had never met her in life was taking her from me.  With every fiber of my body I didn't want to hand her over, I wanted to keep her and hold her and make everyone and everything just disappear but I'm grateful for my son and for remembering that I also had an obligation to him and to teach him.  We said goodbye to Eva, Vandro gave her a kiss and we said goodbye.  Jose and I decided not to embalm Eva and there would be no open casket, and so on June 19th, the day before her memorial service, Jose and I went to dress our sweet Eva.  We were scared, not knowing what we would find or if this would further scar us or heal us.  But as I mentioned, like a magical gift from our Father in Heaven, it felt like we were with her again.  She felt just as before, soft and delicate, a sleeping angel.  Of course I cried, but this time with a gratitude I thought I could never feel, I thanked that sweet angel for letting me care for her, for letting me be her mother.  I felt that baby there, we dressed her like we had so many times before.  Eva had moments of "hibernation" where she slept for days, and you could bath her, dress her, brush her hair and she slept through everything.  It was like being with her for one final goodbye.  I know the spirit of the Lord and the spirit of my sweet girl were there, holding me, comforting me and reminding me of our Father in Heaven's promise to eternal families.  It was like He whispered in my ear, remember your covenants. We took that feeling and Jose shared our testimonies of that at her memorial service.  I know that neither of us could have gotten through our talks without that day with her.  We got to share with those that came what we knew about our daughter, about our Father in Heaven's great Plan of Happiness and bout Eva's mission on this earth.  The day of her service it was the most composed I had been and I was comforted by so many that shared that day with us.  It was a beautiful service because of the love that existed there and in the hearts of those that could not be there with us.

True to life, in the days that have followed, the physical pain, is still there, not the same as it was in the days after her death and before that visit in the funeral home.  I know that, that will take time.  However, the knowledge that I will see my perfect daughter again, if I remain faithful to my covenants, comforts me, it has changed me.  We talk of God, we talk of truth, we talk.  But some times and for some of us, it isn't until we are faced with believing, that we listen.  I thought I had listened, I thought I knew about love and about promises but I learned and listened for the first time on June 19, 2012, and I felt the confirmation of the Lord, that He loves me, that He blesses, that He is waiting for us.  I also know that Jesus Christ not only provided away for all of us to come back to our Father but that our Father in Heaven truly wants us to be happy and have joy here on earth.  It does not mean that we will not face trials, but it means that He is here to comfort us through them, WE ARE NOT ALONE!

As I stated, I know that it will take time, and as we start our new life here in Indiana, and I unpack things, Eva's things, the tears come back, my heart aches again, I turn to the Lord to comfort me, to help me be the wife my husband needs and the mother my son and soon to be infant daughter need.  I am grateful for them too.

Eva Isabel Peña, was a missionary, the tiniest missionary.  I believe Eva's objective on this earth was to teach of Christ, she did not have a pulpit nor could she speak with words, however, Eva loudly proclaimed the teachings of Christ: faith, charity and love!

I love you forever, I love you for always and I will see you again Eva!

So Proud of you Big Girl!!

Emotions have been running kind of high in my household as of late.  This last few weeks we have given our condolences to some families that have lost their HPE babies.  It is heartbreaking to know of how little time they got to have with their angel babies!  And on the other end of the spectrum emotions have been high as we continue to prepare Eva for school.  It is this thought of school and friends and everyday preschool kid stuff that just fills my heart with gratitude to have Eva!  As a stay home mom, I feel like I keep my babies away, all to myself, I am their best friend, their playmate and then the time comes to set them free to make their friends and spend time with other people.  I'm ready and I'm not, I'm ready for her to make friends, oh how that thought warms my heart, to think of her "inviting" friends for parties and play dates!  I'm not ready to just drop her off and trust someone with her.  I admit I am very protective of Eva, I take other's comments in stride about NEEDING to leave her for me time and how we just NEED as mothers to have time away from our kids.  Although it is not too far fetched and I understand why its important to some (and even me) but I guess, as I have posted before, I did a lot of that when I was single.  I worked a lot, I did a lot of charity work, I had a lot of good times.  This is what I asked for and not in a bad way, I never fully knew how much I desired motherhood until I had these kids.  I'm indulging in this time in my life, I stay home, I love it, I loved work too when I had to do that and I enjoyed me me me me me when I could do that.  But now, I'm grateful and thankful to my husband who shares my views and values me staying home.  Someday my time for all my indulgences will come again, when I'm ready.  I have a very blessed life, it is quite different than my life before, I have little material things but many more riches!

We are bad picture takers....or posters...bloggers?!

After reading blogs and seeing the new Facebook timeline, I realized for the first time...we don't have any honeymoon pictures!

*******WARNING: If you don't want to hear complaining and if you only like fluffy, "My Life is Perfect" posts, stop reading now and go back to posting on your "My Life is Perfect" blog********

Ok, so I continue, cause after all this is my blog, my thoughts and if you don't like it, please refrain from posting comments, visiting my blog or really lets just stay acquaintances, I like my friends real and after all real people with real lives don't have ANYTHING perfect!!

I digress, so I really need to work on the memory making.  I've noticed their are two kinds of bloggers, the kind that are so creative and artistic and you just literally learn from their blogs.  They are positive but not fake, they have bad days and proudly display them, they apologies for gloomy posts but make no apologies about who they are and then there are the everything is beautiful and perfect in my life and whatever isn't I simply will never post it or I cut it out of my life! I admit I read both, the latter sometimes out of sheer obligation but the whole time is like major eye role!!!

So I will focus on the first blogger, I recently found a few, I love love love their pictures and this is what reminded me that I have no pictures of my honeymoon! We'll we kind of had a last minute honeymoon and the pictures we did have were on our phones (that we no longer own).  What I also love about these other bloggers is that they are of all different...let's say sizes, colors, heights etc...but they look amazing in every picture they take and are in! I really think the camera sees right through you, like where you are in life and how you feel about yourself...it doesn't lie or fake!  Or the photographer is amazing and it can help the camera do its job!

I will admit, that I have been aware of my not taking/posting pictures problem for awhile and I do have a ton of pictures since I've had kids (well a ton for me...anyway) but I haven't put them up.  I'm also kind of careful about what I want out there in the internet.  I have law enforcement in my family and I think that has something to do with it, I just don't want some pedophile searching on the internet for pictures and uses my kids!  I just do not like it when little kids are posed topless with only jewelry on or babies with only a tutu on, I know I might sound paranoid but if you heard the true stories I did you would take those off your internet accounts ASAP too!!  The other thing I figure, those closest to me will come to my home and see my pictures and look at my albums and be able to see the chronology of our lives!  I like that idea!

Facebook is nice and so is blogging but sometimes its like celebrity, don't put stuff out there that you don't want criticized or reposted somewhere else.  I am very conscious by the way of what I blog about too, Oprah once said, (and this was early 90's Oprah) "Don't put anything out there that you don't want in the front page of the New York Times" and that should help you be careful about what you write!  It doesn't mean you have to write fluff and perfect stuff only either!  What I like most about the real blogs is that they make me feel all is possible, a beautiful family, righteous living and all of this even with bad stuff along the way.

So I say, I am a recovering bad picture taker...and thank you to all you good bloggers and picture takers for your continued inspiration!

Alobar Holoprosencephaly...I can only speak for myself!

H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y

Holoprosencephaly...I could hardly say it, let alone spell it, and this word changed my life forever 3 1/2 years ago.  I don't know why but lately I've been back there, in those first few days after we heard that diagnosis.  What I feel and remember is so real and raw sometimes, how can a word or a phrase or a moment change someone so much.  It did.  That day, I really really grew up.  I was in something that I could not change or have control over.  I was in all the way.  Never in my life previous had I experienced anything like that, I was a good runner, I could run away, I could let anything go that was "uncomfortable", but this I could not.

I have encountered many parents with children with similar diagnosis, and to be honest I admire their way of "seeming" to let go and just be "normal".  Maybe they say the same about me, but I guess I'm letting the cat out of the bag.  It hurts.  Sometimes I just want to grab Eva and hug her Well.  I want to hear her say momma so bad, I want her to want me and ask for me.  I want her to complain and laugh when I tickle her.  But when I hold her, I know she knows me and my silliness.  I know she knows all of that is not important. When I hold her, I do feel her holding me right back.

H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, I can spell it really fast now, I can say it without stutter.  Please ask me about Eva, Please don't just stare.  Please let your little children ask about her and not make them turn away.  I know with out a doubt in my mind, that even without language Eva can speak volumes to you.  Let me tell you about her.  Let me share her with you.

I may not Tweet, Facebook or Blog our every day lives.  I may not post medications that she takes, or post pictures of procedures she's had, but thank you to the parents that do, I know you educate by doing that, I'm not there yet.  Medically speaking what Eva has is what Eva has, what time she has is the time she has, there is no cure, there is no fix, there is only purpose.  I want to share with everyone who Eva is not what she has, and I don't know exactly how to do that.  I mean, the last, very last thing I want is for anyone to ever look at my daughter and Feel sorry for her or me.  I never want to put her in that light, Eva is happy being Eva and she teaches the rest of us that its ok, particularly mom! I'm still a little bit in a bubble about Eva, thus far my blogging has been about it, I'm working on it!

I am so proud of her work in therapy, about her going to school soon, about her cute long hair.  But I swear that little girl is a teacher!  She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!

I can only speak for myself and our situation in regards to Alobar Holoprosencephaly, and how we live with it, what medical avenues we've chosen and what kind of intervention if any we will take.  It is not a condition that can be boxed, although a physician and a scientist may say different.  Although many children look similar, every single one of them is different.  Although some parents may want to be an HPE experts they can only be an expert on their child, not any one else's.

If you find yourself there, If you find yourself hearing a doctor utter that word to you, remember two things. You are not alone and You are the captain of the ship, it is your child and your decision, physicians are there to provide guidance and answer questions but it is all your decision!

I leave you with these thoughts, I needed to just get them out there!

Boy have I been waiting for this one!!

Words can not express the emotions that have gone on these last few weeks or month in our home!  We literally have had an abundance of support and blessings, "the heavens have poured out her blessings" on us! Brothers and Sisters, Friends, Family, perfect Strangers...the Lord hears and answers our prayers! If you didn't know this, KNOW it, if you KNEW it, don't forget it, if you want to know, ASK Him, go to Him with a broken heart and a contrite spirit!!!

First of all....I have been waiting, some days not so patiently, waiting to post this:

JOSE GOT INTO MEDICAL SCHOOL, he has been invited to Indiana University's School of Medicine's class of 2016, that is right, he did it and as I stated above...the Lord answers prayers!  I know Jose will do wonderfully in medical school, I know that he can compete with the best of them.  I also know that the Lord's hand was in his getting accepted!  Jose worked hard after very difficult back to back semesters, when we found out about Eva's diagnosis and when Eva was born.  He spent the next almost two years trying to recover.  On paper and by grades and scores, he did not seem so competitive(in the MD arena anyway)...shame on you schools who did not take your opportunity to interview him and really get to know who he was, shame on you not seeing this diamond in the rough!!


Hooray Indiana...for your insight in choosing first of all to interview Jose and then for inviting him into your class!

Jose got into Indiana (top ranking medical school by the way) after only 2 rounds of interviewee considerations (2 rounds from his interview date).  His interview trip to Indiana was full of blessings from the moment he got his interview day (on his birthday), to finding a great person to stay with (transplant surgeon), to getting a great interviewer, a physician (who first hand had experienced having a very sick child)...coincidence or the Lord's hand at work?  My husband is a hard worker, honest and true! But we ultimately thank our Father in Heaven for His constant watch over our family and Jose!

Heavenly Father, clearly, asks us to do the work, Jose did just that, he also encourages us to not only remember Him in thanksgiving but to ask for what we want (righteously of course)!  What have you done for Him lately or for your neighbor?  I ask myself this question all of the time.  In our case I feel that Heavenly Father's blessings are this constant reminder for us NEVER to forget to serve His children.  I may not have grandiose means to serve His children, but I am reminded that I can serve Him without grand gestures, just pure intentions!

I can't really begin to explain the wonderful wonderful inspired people that we find in our lives.  Amazing, thoughtful, generous and kind people who have taught us the meaning of being a servant of Christ.  Where I have seen the dark in people I have seen 10 more with love, generosity and kindness!  That has been a blessing.

I hope I never forget this moment in our lives....

I have been waiting to blog about these feelings, waiting to get that oh so big news, but as I sit her typing I realize, there are no words powerful enough to express the way I feel!  Its BIG and I'm with a full heart!

I hope friends and family that you can help hold me accountable for these words I share with you today, for these feelings that are so big and that you help me remember!!

Jose and I are fully aware that any journey we take in life big or small does not have to be alone, we have never been alone.  Even in the furthest place from people we knew, from our family....we were never alone.  Loneliness is a feeling we chose to have or not to have.  I had to tell myself that many times, we really are never alone.  Jose and I welcome this new journey and chapter in our lives, we maybe moving 2,000 miles away from our family but we know we are never alone.

The world is smaller than we know and time goes faster than we care to acknowledge.  Let's make the most of this wonderful chance at life we have been given, that's how it should be from the get go, right?

Anyway, its been an overwhelming month, weeks and few days!

I can't wait to see whats around that corner!

The Articles of Faith

So I committed to myself this year I would blog more, I've committed to that like a hundred times so bare with me...LOL! Anyhow this post came from a small prompting as I was thinking of what I would like to share, outside of my family situation, in a blog. The Articles of Faith are thirteen statements of LDS beliefs, they were written in order to explain our beliefs as members of the Church of Jesus Christ of Latter-day Saints! Here they are:

1. We believe in God, the Eternal Father, and in His Son, Jesus Christ, and in the Holy Ghost.

2. We believe that men will be punished for their own sins, and not for Adam's transgression

3. We believe that through the Atonement of Christ, all mankind may be saved, by obedience to the laws and ordinances of the Gospel.

4. We believe that the first principles and ordinances of the Gospel are: first, Faith in the Lord Jesus Christ; Second, Repentance; third, Baptism by immersion for the remission of sins; fourth, laying on of hands for the gift of the Holy Ghost.

5. We believe that a man must be called of God, by prophecy, and by the laying on of hands by those who are in authority, to preach the Gospel and administer in the ordinances thereof.

6. We believe in the same organization that existed in the Primitive Church, namely, apostles, prophets, pastors, teachers, evangelists and so forth.

7. We believe in the gift of tongues, prophecy, revelation, visions, healing, interpretation of tongues, and so forth.

8. We believe the Bible to be the word of God as far as it is translated correctly; we also believe the Book of Mormon to be the word of God.

9. We believe all that God has revealed, all that He does now reveal, and we believe that He will yet reveal many great and important things pertaining to the Kingdom of God.

10. We believe in the literal gathering of Israel and in the restoration of the Ten Tribes; that Zion (the New Jerusalem) will be built upon the American continent; that Christ will reign personally upon the earth; and, that the earth will be renewed and receive its paradisiacal glory.

11. We claim the privilege of worshiping Almighty God according to the dictates of our own conscience, and allow all men the same privilege, let them worship how, where, or what they may.

12. We believe in being subject to kings, presidents, rulers and magistrates, in obeying, honoring, and sustaining the law.

13. We believe in being honest, true, chaste, benevolent, virtuous, and in doing good to all men; indeed, we may say that we follow the admonition of Paul--We believe all things, we hope all things, we have endured many things, and hope to be able to endure all things. If there is anything virtuous, lovely, or of good report or praiseworthy, we seek after these things.

Writing this blog has allowed me to remember the promises I made in baptism and the covenants I entered into. As I share these beliefs, these Articles of Faith, I am reminded that there are some things I do not honor so well and that I must do a better job. If you have any further questions on these articles or other beliefs of the LDS church, please feel free to stop by at LDS.org or Mormon.org

Happy Happy New Year!!!

Looking back on 2011, as years past, it was pretty memorable and full of learning opportunities!

Jose graduated from BYU, Evandro celebrated his 1st birthday, Eva has continued to gain weight, and work hard for her physical therapist and well for myself, I went back to school and felt pretty triumphant with finishing the semester with all As (if you know me and know my past academics, that is quite a triumph!). We moved twice in 2011, celebrated 4 years of marriage and the best news of all came on December 16th in the way of a phone call, Jose was invited to A.T. Still University for medical school. I can't explain the weight that was lifted with that phone call for both of us (temporarily anyway, to be explained later).

I have watch for the last 4 years as Jose has met every challenge that this career choice has put in front of him, personally, academically and spiritually. He has risen to every occasion, some times gracefully and well, some times not so gracefully...LOL!! There is much much more to face, and it is a lot more complicated than just getting this first acceptance, I won't bore anyone with the immediate details but if anyone's children are interested in medical school or if you are planning on that path, feel free to ask!

This New Year was wonderful, basking in the Arizona sun, it was 77 degrees on New Year's Eve, chilly at night but the days were amazing! We got to spend time with family, both Jose's and mine, we hadn't done that in a long time. Ironically, we have only began to enjoy the outdoors here in Arizona, when we moved back in late April/May, Provo was still chilly, and we had been just coming out of our winter hibernation...LOL! When we came to Arizona, it was 100 (million) degrees and well we went into a summer hibernation! So fall time in Arizona is heavenly, hiking, playing in the park, biking, running! Its just gorgeous from October to about April.

What will 2012 bring? Well, so far it has brought a new wheelchair stroller for Eva, she looks like such a big girl in her chair and it helps her interact so much more than her baby chair did! In a few weeks Ms. Eva turns 3 years old and once again reaching a milestone. 2012 will bring one to two moves (my favorite...not!), the start of Jose's medical training, and I'm sure many more challenges to face as well as lessons to learn.

I am grateful for the selfless people in our lives that have helped us face our challenges, that have supported us when we didn't know where to turn or where help would come from. This last year was full of the Lord's blessings and merciful love. He has touched our hearts to help us serve, he has touched others hearts who have served us!

I have a very strong testimony that our Father in Heaven hears our prayers and that He knows our every thought, desire and heartache. I know He loves us and is ready to help us if we are just willing to ask and humble ourselves.

I have high hopes for 2012, I pray that I will be ready to meet any challenge with the help of my Father in Heaven!

Happy Happy 2012 to you my friends and family!!