The Intermediate Blogger

I told myself I wouldn't be the kind of "blogger" that really only wrote every 6 months or on important dates.  But here I am 6 months since writing my last entry.  However, I just couldn't let this day pass without sending up a big Happy Birthday to our Eva.

Today, you would have been 6 years old, finishing up the last quarter of your kindergarten experience.  You'd see Vandro and how he loves to build with Legos, his love of Batman and how he teases Camila.  You would see your beautiful little sister and how much you and her look alike.  She is just like you, she is such a girl, loves pink and purple and is one tough cookie!

You would be so proud of your Papa and how much he's learning and how hard he's working and how much he loves what he's doing!
You'd be excited about having a new baby cousin Arialise and how happy grandma and grandpa are! How grown all your cousins in Tucson are and you how baby James and baby Devan are NOT babies anymore.

Today my sweet girl, we will celebrate you, the day you came into our lives, the day that everything changed, not because of a diagnosis but because you made us parents, you made me a mother, you taught me how to love in a way I had never experienced. Today I will also celebrate motherhood and all it has to offer, the good, the great and the tiring parts!  Today I get to remember that day I heard your first cry, when I first kissed your face and realized you are mine for time and all eternity!

HAPPY BIRTHDAY YOU BEAUTIFUL GIRL!! "I'll Love you ForEva, I'll Like you for Always and as long as I'm living my baby you'll be"

January 28, 2009
Our First Meeting!

June 2012

Eva and David Keller June 2012

One of Eva's most favorite people, Susan Keller. June 2012

The Un-Pause...I needed that!

Monday June 16, 2014...This was the day of the "un-pause"!

Today (well Monday...since its like 2am on Tuesday), the kids and I headed out to Chicago to visit with the Beers!  You know the Beers...David and Cassie, Naomi and Sydney (born 2013)!

June 9, 2013 Spanish Fork, UT

This year we could not make it out to Arizona, we could not put flowers on your gravesite, we could not visit Utah and all the wonderful people that knew you and us with you!  Today we just went to visit the Beers.  Vandro and Camila played with Naomi and Sydney, we had lunch and then played in the backyard and the baby pool.  Just a fun day with friends!  David bought little cupcakes for Vandro and Naomi's upcoming birthdays (June 21st & 28th).  It was a fun day.  We packed up after what seemed like a fast afternoon, and headed back to Indy.  Except when I got in the car and drove away and as I looked at your brother and sister fast asleep in there car seats....memories came flooding back!  The winter you born, the pizza at our house with the Beers, General Conference at their tiny apartment in Provo, their new home and our "mommy" dates their.  Cassie and I's pregnancies.  And June 2012, the last week you were with us. The Beers, Vandro and Naomi playing and for the last now three summers, us singing an early Happy Birthday to Vandro and Naomi.  And my heart ached for you.  I can not tell you though, what a blessing today was, to be with friends, to talk about you, to remember you, to remember our times in Provo.  I felt you there with us, with the Beers!

The last week of your life, we spent it in Utah, we had so much fun, we forgot to take a lot of pictures...I always thought, "oh, I'll do it next time".  We stayed with the Beers and we visited all of our favorite Utah people.  Oh, but I have the memories, how much Naomi loved you, how she couldn't wait for you and Vandro to stay in her home!

David Keller

Susan Keller

June 11, 2012 Page, AZ

Last year, we remembered to take pictures...we took a lot of pictures!

June 2013 Cougareat

June 2013

Birthday boy and girl, June 2013

Vandro is quite the trooper!

Today we played, we laughed, we had joy!  The heartache will never completely cease, I know that, but I know that it is our Father in Heaven's wish that we have joy.  That we love the lives He's given us, I love my life, I love my children, I love your father...my heart hurts when I think of kissing you, holding you!  But I know that mortality is filled with trials, and it is the trials that make the sweet times, sweeter!

The babies

 

June 2014 Birthday cake

"My big sister soars in heaven"

And here we go, the un-pause.  Its my new year, its time to move forward, to look towards the new adventures, the new memories...and Eva, you will be right there with us!  I love you my Angel daughter!  THANK YOU BEER FAMILY for a wonderful day, that meant more than you know!!

My Dearest Evita,

I can't believe its two years today.  I can't believe its been that long since I've held you or kissed your face.  This year will be the year of the unpause.  Since you left I have felt like time has stood still, except it hadn't, I had.  

Today we will think of you, remember you and the promises made by our Heavenly Father! Families are Forever, I know this is true.  Till We meet again, my sweet angel.

Till then you will forever be in our hearts.

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.