My special poem!!

My husband and I are very different.  Sometimes I think wow, I have a lot of training to give this man!  And somedays I am reminded wow...he has a lot of training to give this woman!  Today is Mother's Day and true to the wonderful, thoughtful man he is he gave me this:

I know I say you're beautiful

For me it's plain to see

That my life was completely changed

the day you came to me

Your beauty comes from deep within

a fire burns inside

a kind and gentle loving heart

you're outside just can't hide

You're sweeter than a tulip's scent

you're smarter than can be

You care so much for those around, 

no one can disagree

I want to be a better man, 

I want to learn to love-

the way you love Eva and I

and our Father up above.

I'm proud to say I married you,

I' proud to say I'm yours, 

I'm proud that you do love me so, 

my heart so overflows.

We have so much ahead of us, 

much to look forward to, 

though challenges await us, dear, 

I'm glad they'll be with you.

So please accept these few kind words

I mean them every one.

Today I am reminded of the love that exists between a husband and a wife.  Motherhood has brought me great joy but I could not have done it, I could not do it without the constant support of my husband.  I am grateful that he is the kind of man who is a leader, a hard worker and who is generous and tender.  I am looking forward to many more Mother's Days as the mother of his children.

Thank you for allowing me to share this....

Happy Birthday Susan Turley and The Joys of Parenting!!

Today is our friends Susan's birthday.  Susan would have been 26 years old today.  I have written about Susan in past posts, she was amazing and is inspiring!  She was the true definition of a Christian, she was loving and inclusive of everyone, she was happy and friendly, energetic and fun, she was faithful and true.  I guess I look at her life and I think of her parents and what a great job they did.  They were true to their faith and they were constant good examples to their children.  This is the parent I want to be.  I think of Eva and regardless of how short her life will be, she still needs good examples.  She needs examples of hard work, of honesty, of charity and service.  We can't just tell our children what we want them to be, WE must be the examples they turn to.  We can not ask them to work hard and not show them what hard work is, we can not tell them to be forgiving and loving and not forgive or love.  We can not ask them to choose the right when we don't.  

Parenting has been my greatest challenge and (up to now...that's my disclaimer) the greatest experience of my life.  I'm not sure what it is about children but it makes you love your spouse more, it makes you have more conviction (or at least work harder at it), it makes you want to be better!  If I had only known what being a parent was all about I would have done this sooner...LOL!  Well, the Lord knows each and every one of us and he knows when our time is and when our time is not to parent!  I think its a matter of us believing that and that he truly knows best.  I know parenting can be hard, challenging and for some lonely.  But I also know that we are never alone, that a loving, caring, merciful Heavenly Father watches over us as we parent.  I know that, when we ask and listen, he guides us with His loving hand to make the right decisions.  But, we have to ask and we have to listen!  This in itself can be the most challenging part of parenting.  I know that I have not met all the challenges that some of you parents have and that we all experience different parts of being a parent to a particular child, but I know that when the decisions we make are in the best interest of our children they are good decisions and that makes you a good parent!  And better yet when we include our Heavenly Father in these decision we are much more clear on the answer.

Happy Mother's Day to the Mom's that are mom's and the Dad's that are mom's and to the mom' s that are not yet mom's!  

12 Weeks YaY!

So our little one is 12 weeks today!  How exciting, I can honestly tell you that 3 months seemed like centuries away.  Eva is amazing!

The weather is finally looking up, yes it snowed here like last week!! We love our walks as well as mommy needing to get back into to shape for baby #2!  No we are not pregnant but we would love to be by the end of the year or the beginning of 2010!  Hey we believe Eva needs a little brother or sister to admire her.

So much has been going on, hence me not blogging for awhile.  Well, Jose got a full tuition scholarship for Spring/Summer term, it came out of the blue--it seemed--and was an answer to our prayers!  He will be able to make up some of the classes that he dropped during winter semester.  He is also starting mentored research this semester and is so excited and nervous all at the same time.  He has gotten some great responses from professors and so far has chosen one of the more challenging labs to do research but also the one that has the best reputation, its the cancer research lab on campus.  Some say it is one of the surest ways to get into medical school--ha, who knows.  Eva, Jose and I have enjoyed this "break" from school.  We have taken soooooo many pictures of us and we have gone exploring in Provo.  This is Jose's last week free from school, work and work...haha.  We are trying to make the most out of it, we have just totally focused on our little family.  We know that we will need this time and these experiences to get us through the more difficult times to come.  He knows that committing to school and this mentored research we will not see him very much.  Eva and I will be ok, though.  I am so proud of Jose!  I have albums on Facebook with pictures, I'm not that experienced with blogging.  

Last night we had the best FHE (Family Home Evening), we talked about goals and how fortunate we are to belong to a church that values goal setting and progression.  How we have prophets that counsel us to always look to make goals and to always find ways to progress and grow.  It was a great FHE!  So one of our goals in honor of Earth Day, we are going to be cleaner in our home and with our bodies.  Jose and I and our friends Matt and Mele, are going to run the Provo River 1/2 marathon!!!!  How fun is that!  We have made weekly goals both for our physical and spiritual growth.  You just can't have one with out the other!  The race is in August and we have about 14 weeks to GET FIT!  We both are kind of pumped about it, I hope we can stay pumped and that we can keep each other motivated.

Eva had a rough couple of weeks.  There was a lot of activity in our house.  When she gets irritated, she has an increase in seizures it takes a lot out of her and it almost seemed like she was just so tired of fighting.  However, that next week we just chilled and we were back on Eva time and she actually slept A LOT.  Well come that Friday her nurse, Margaret came to see her and she said she was looking good and that she was surprised how much better she was from the last visit.  Eva is quite the little fighter!  I have to admit it sometimes gets to me that my little one (medically speaking) has no cognitive thinking, no emotions, no real understanding or reasoning because of the part of the brain that she is missing.  However, I am a Latter-Day Saint and of course, I know better.  I know that her spirit knows me and knows how much her daddy and I love her!  I feel as though Eva is the one taking care of Jose and I, she is so wise to what we need and for right now we do need her.  I do pray that when the time comes we are able to set her free with out complaint.  Maybe some crying and heartache, definitely but with the understanding of the Lord's greater plan for her and us.  I can not even imagine what the Savior's mother felt to know what her son's charge in this life was to be.  To love Him, to raise Him and then to watch Him be tortured and die a physical death.  She is such an example to me of selflessness and love!

Angel Watch needs all of our help!

We need your help, Angel watch needs your help!

In past blogs I have talked about Angel Watch.  Just a recap, Angel Watch was the program that works with Intermountain Healthcare, they provide support and counseling for families that have received diagnosis similar to the one we received with Eva.  The terminal diagnosis.  

Angel Watch prepared us prenatally, not only with support and counseling but also with practical information on how to handle any outcome before and after delivery.  They were supportive of us, no matter our decision.  It was easy to want Eva, to not terminate the pregnancy.  It was not easy to go through all of the motions.  Angel Watch was essential in helping me sort out my feelings, on how to deal with family members that, although meant well, didn't really know how to "deal" with us.  They helped us with difficult things like finding a mortuary, a funeral home.  How to plan for the best delivery if our baby was stillborn.  They did this all in the most thoughtful and respectful manner.

I think back to September 12th, the day we received our diagnosis; Jose and I were numb.  The only thing we knew was that we wanted that little girl but the rest we had no clue how we were going to do it, the rest of the pregnancy etc...  I know the Lord puts others in our lives to work on his behalf.  Angel Watch was just that, they are Angels that are watching over us!  I could not imagine any family, couple having received the news that their baby might not be born and if born, might live hours, days, weeks or months.  The love, support and counsel that we received was what prepared me for now, for today.  It prepared me to be the best mom I could be to Eva, to enjoy her, to make memories everyday with her, even prenatally!

Well, Angel Watch is run almost entirely by donations and they need your help to keep this program going for next year!  This is how you can help!

Pam Hansen, who is the author of a book, Running with Angels is co-sponsoring a 5K Run/Walk on May 16, 2009 along with the help of Intermountain - Utah Valley Regional  Medical Center (Where Eva was born).  It is at 8:00 AM at Thanksgiving Point, in Lehi, UT.  Registration is until 7:30 AM.  This year, she has designated that all of the proceeds of the race are to go to Angel Watch to support the program in the Utah South area, with any special donations going to to our statewide program!  It would be so wonderful if you were in the Utah area or wish to come to Utah and run or walk in this 5K and help support Angel Watch!  If you are not in the area but want to help support this amazing program please, please consider donating money.  

If you wish to donate, here is how you can do it: go to www.mckay-deefoundation.org and then click on ways to give and you'll see the donate online button.

9 weeks old

Eva is 9 weeks on Wednesday, April 1....no joke! We are so proud of her, she has definitely been a strong girl and a fighter; daddy and I have been fighting right along with her.  I see this strong spirit in her, she wants and needs to be here!  Although I know Eva's prognosis, and that she won't have a long life still, this little one has a purpose and since we are in week 9 and we were told that most likely she would not make it to 2 months, I know that she has some work to do.  She looks great but I also know how quickly things can turn so we celebrate each day and at the end of the week, each week and hopefully at the end of this next month one more month.  Jose and I do have to work on being ok with whenever Heavenly Father calls her home, I have to admit that I pray each day to really mean that, to really be ok, to have faith that Heavenly Father's plan includes us being together as a family forever.   

We celebrated her 2 month birthday on Saturday the 28th and her daddy made her a b-day cake--from scratch and it was awesome! We got to celebrate with some family from Tucson as well as with some very good friends of ours and that was a blessing!

Bendiciones!

Bendito el lugar, y el motivo de estar ahí,
Bendita la coincidencia,
Bendito el reloj, que nos puso puntual ahí,
Bendita sea tu, presencia.

Bendito Dios por encontrarnos, en el camino,
Y de quitarme esta soledad, de mi destino.

Bendita la luz, bendita la luz de tu mirada,
Bendita la luz, bendita la luz de tu mirada,
Desde el alma.

Bendito ojos, que me esquivaban,
Simulaban desde que me ignoraban,
Y de repente, sostienes la mirada.

Gloria divina, diste suerte de buen tino,
Y de encontrarte justo ahí, en medio del camino,
Gloria al cielo de encontrarte ahora,
Llevarte mi soledad, y coincidir en mi destino,
En el mismo destino.

These are song lyrics by MANA, Bendita tu Luz.   The song is about blessings and has been Jose and I's song from the beginning of our relationship.  It actually is my ringtone for him.  I like to think of everything and everyone as a blessing.  I know we feel different, I know we are different since the moment Eva came into our lives and it has taken our trials to see our blessings.  The love and prayers we feel from friends and family has lifted us, I don't think we could ever be as strong as we feel right now with out them.  You all make us stronger and better.

There have been incredible people in our lives, some have always been there and some just kind of popped in and have surprised us.  One such person is Susan Keller, she is a friend from our church.  She has been absolutely amazing to us, she loves and cares for Jose and I but more importantly she loves and cares for our Eva.  I can tell how much Eva enjoys her visits.  No matter Eva's mood I can see her calm in Susan's arms.  Susan has been a savior so many times to us when we just needed some time alone, Jose and I.   We have felt comfortable and secure leaving our little girl in the care of someone that genuinely loves her.  Susan is not a relative or long time friend, she has no obligation to us but she treats us like family and we love her.  She has been always thoughtful of us.  Recently Susan via her friend got us in touch with a photographer James Strayer, another generous person.  James, his wife Susan and their 7 week old baby boy came to our home and took beautiful pictures of Eva and of our little family.  He was so great with Eva, with us!  I am horrible at taking pictures, but James was able to put us at ease about taking pictures and just enjoy being a family.  He is a professional and takes beautiful pictures of babies and families.  I think you can see the love in his pictures.

Aside from numerous friends and family that have also been essential in our getting through this situation, these two individuals, Susan on a day to day basis and James Strayer with the sharing of his time and talent have allowed us to truly enjoy creating the memories of this moment.  We are grateful for all there generosity.  We are truly blessed with so many that have kept us in their prayers, that have told us how much they love Eva, even though they have not met her.  Ok...I'm going to sound corny... but your love makes all the difference to how we have made it this far, I know that love is real.  I know that love can change people and situations.  I know that love can heal.  Jose and I know that we have more difficult times ahead but right now I feel we will get through it and that we are not alone.  It makes me feel so good to know that we can share our little girl with all of you, that we won't be alone in remembering Eva when she is called home.  Thank You!

James is a photographer here in the Utah Valley, www.jamesstrayer.com.   

Blessings!!!!!