Heaven's Very Special Children

Tonight (this morning...whatever time it is) I spent time searching on the web for Holoprosencephaly.  It's been quite awhile since I've looked on the web for other parents, families that are dealing with this same condition, as well as any new information regarding this diagnosis.  I had to stop looking, it can be an obsession if you let it, and spending time with my daughter has sort of taken precedence.  Sometimes its good to just step away from the diagnosis and just enjoy the person.  However, tonight,  I was inspired, alarmed and touched at the other blogs I found (which you can check out here on my page, to the right of my posts).  So many parents that received the same heart-wrenching news about their children and so many strong and positive stories about how they are dealing with pregnancy, delivery, saying hello and saying good-bye.  In so many ways I feel so lucky to be in Our situation.  I try to make our life as normal, as normal can be, sometimes it back fires on me.  When Eva has a bad day or week, I guess I am again reminded of how not "normal" our situation is and how taxing it can be.  Nonetheless, I try to keep the normality in our home as best as possible.  Eva is approaching 5 months.  Can you believe it?  Before she was born, I spent time not setting up her nursery or having baby showers but planning her funeral.  I had to stop, I just couldn't.  I just didn't feel like that was what I needed to do.  I was scared and nervous on the day she was born, but I knew with all of my heart that I would meet my baby girl and all that funeral planning needed to take a backseat.  I still have "the planning" in the back of my mind.  The planning to say good-bye and all the other details that go into it.  I sincerely do not believe that her time is near, I may be naive but I know Eva will let me know when.

For now, she's eating, she's growing (not at the same rate as baby's her age) and we are living with our situation.  She continues to have seizures on a daily, hourly basis.  But Eva is strong and she is doing well with the hand dealt to her.  I am so proud of her.  She does not complain, she preserviers.  Only she knows how much she can handle, we just comfort and love her through it.

I have to say, in reading about so many parents that have children with special needs I am amazed at how they perservier!  They do not put limitations on their children, they give them opportunity and in return these little ones thrive, at times they don't even know they have limits.  These are very special parents and very special children, truly inspirational!  

I read this poem on someone else's blog and googled it, I have posted it here to share with all of you!  It is a beautiful poem that I hope all of you will share with parents that you know care for a special needs child.  Thank you all for your constant love and support, thank you for your thoughts and prayers!  Although, we are far away from "home" please know that Jose, Eva, Jeter and I know how very NOT alone we are.  Because of our church members, friends, neighbors etc...we are trying to lead the most "normal" life we can.  And I am so grateful for all of you that aid us in accomplishing this difficult task.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth, 

It was time again for another birth.

Said the angels to the Lord above-

"this special child will need much love.

Her progress may be very slow, 

Accomplishments she may not show.

And she'll require extra care, 

From the folks she meets down there.

She may not run or laugh or play, 

Her thoughts may seem quite far away.

So many times she will be labeled, 

different, helpless, and disabled.

So, let's be careful where she's sent.

We want her life to be content.

Please, Lord, find the parents who, 

Will do a special job for you.

They will not realize right away, 

The leading role they are asked to play.

But with this child sent from above, 

Comes stronger faith, and richer love.

And soon they'll know the privilege given, 

In caring for their gift from Heaven.

Their precious charge, so meek and mild,

Is HEAVEN'S VERY SPECIAL CHILD."

by Edna Massionilla

Dec, 1981

The Optomist - newsletter for PROUD

Parents Regional Outreach for Understanding Down's Inc.

The Binky, Pt 2

I can't believe our little one is 4 months old today!!  She is a blessing everyday she is with us.  She is an amazing teacher of all things and yet so tiny.  I love this little video, although it does not ring true for some of the days, it certainly does help to have reinforcements! 

The Binky, pt 1

You have to check out Binky, Pt 1 and then Binky, Pt 2!  She is so cute and she loves her Binky, it is mom's friend!

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.