Monday, January 31, 2011

Numbers 11 &19

Today Pat and I met with a geneticist from Washington University.  I can't even begin to explain the feeling of walking into a doctors office not having any clue what to expect.  I had no idea going in what a geneticist was or what was involved in genetic testing.  Basically, Pat and I were clueless.  We both thought that we would go, get blood drawn and then we would get results in a few weeks.  We couldn't of been more wrong.  First, the doctor took an in depth family history.  We discussed the health of our parents, siblings and nieces and nephews.  The doctor then looked at us both with a  kind smile and said "Let me just say that there is nothing you did to cause this and there is nothing you could of done to prevent it. This is just one of those rare occurences that we can't explain."  Huge sigh of relief!  Although every doctor we met with told us we did nothing wrong... it was nice to have it confirmed.  This next part is crazy!   The geneticist had seen part of Paige's autopsy report and found out the following...during chromosone distribution very early on in my pregnancy is where Paige's trouble began.  Half of chromosone 11 connected to half of chromosone 19 and then the other half of 11 connected to the other half of 19.  (Confusing I know)  Because these chromosones got messed up they told Paige's body to make too many white blood cells.  Paige's leukimia was caused by this chromosone mix up. Crazy!  It's absolutely baffling to me how two chromosones can cause such a nasty illness in a small body.  Pat and I are still trying to process this information.  We are so very thankful that we did not do something to cause Paige's illness and that future children will not be effected by this occurence.  We are also extremely thankful that God created doctors as intelligent as our geneticist. It's amazing that they can get that much information from blood.  We can only hope that something from Paige's reports will one day help future babies born with Leukimia.  As I said before we are still processing this information.  It's so very hard to understand.  Pat summed it all up on the way home from the doctors today he said, "I hate numbers 11 & 19" and I second that statement.

Give Me Strength

In a previous post I wrote about my new outlook on prayer.  I now pray for strength and strength alone.  Today is no different. My prayer is strength.  Later today Pat and I will meet with the geneticist for genetic testing.  We are hoping that we are told that Paige's sickness had nothing to do with us and will not effect future children.  I ask Jesus to give us the strength to digest the results of these tests no matter the outcome. 

Friday, January 28, 2011

Due Date

I've been dreading this day for the past month.  My due date.  How quickly life can change and there is nothing we can do to stop it.  How I would love to stay in bed all day and just sleep the day away, pretend it never happened.  Even though it's been nearly a month since Paige went to Heaven I still find myself waking up and feeling my stomach to make sure the past 4 weeks were not just a horrible dream.  It's not a bad dream, it's my life.  Today I am choosing not to focus on what I have lost, but to focus on the blessings of this whole experience.  I am very blessed.
  
   Thank you Jesus for...
                    ... giving me 64 hours with my beautiful daughter. 
                    ... time to hold her and kiss her.
                    ... allowing my entire family to meet her and see her
                        sweet face.
                    ... allowing Paige to open her eye for a split second so we
                        were comforted with knowing she saw her mommy
                        and daddy.
                    ... all the beautiful pictures of our angel.
                    ... the wonderful nurses and doctors that cared so
                        lovingly for my baby girl.
                    ... giving me a husband that lights my world and makes
                        it worth getting up each day.
                    ... family and friends that love me so much.
                   
The list could go on and on.  Although my heart aches and my tears continue to flow I know I'm so very blessed.  And for these blessings I'm thankful.

I love you and miss you Paige!


Wednesday, January 26, 2011

Precious One

I've never been one to just sit and read.  I know, I know... you're probably thinking "but you're a teacher!"  Yes, I teach kids everyday how to read and even more so, I try my best to instill a love of reading in each child I teach.  I don't dislike reading, I just don't do it often.  Well, didn't do it often until recently.  I've been reading a ton lately.  I read blogs of other mother's who have lost children, I read books about how to grieve (I don't believe there is a right way to do this), I read Internet articles on Leukimia (I've stopped this recently because it only makes me so angry that my baby was 1 in 19 million) and I read to inspire myself.  I've come across a lot of poetry lately that I can relate to.  Some of the poems seem to tell my story and how I'm feeling.  One poem I came across was entitled "The Childless Mother".  I'll spare you the sad poem, but to tell you the truth... childless is exactly how I feel.  I sometimes feel like I walk around with a big sign hanging around my neck that screams "CHILDLESS".  It's awful, I hate it and I wish I didn't feel this way... but I do.  I am the mommy who does not have her baby.  Just typing it makes another piece of my aleady broken heart break.  I share this emotion not for pity, but to help others understand how I'm feeling.  I don't feel whole but somehow with my heart all in pieces I still feel love.  Love for my husband, love for my family, love for my friends and love for my baby girl in Heaven, my Precious One.  I share this poem because it focuses on my sweet Paige.  She is so very precious to Pat and I and even though she was taken from us we will always be her mommy and daddy.

Precious One
Precious, tiny, sweet little one
You will always be to me
So perfect, pure and innocent
Just as you were meant to be.
We dreamed of you and your life
And all that it would be.
We waited and longed for you to come
And join our family.
We never had the chance to play,
To laugh, to rock, to wiggle.
We long to hold you, touch you now
And listen to you giggle.
I'll always be your mother,
He'll always be your dad.
You will always be our child,
The child that we had.
But now you're gone...but yet you're here
We'll sense you everywhere.
You are our sorrow and our joy,
There's love in every tear.
Just know our love goes deep and strong,
We'll forget you never
The child we had, but never had,
And yet will have forever.
-Author Unknown


Our Precious Paige


Tuesday, January 25, 2011

Finally, Some Happy News!!!!

On Sunday night my youngest brother and his girlfriend Hannah got engaged!!!!  So great to hear some good news!  I am so happy for them both and so excited to have another sister. 

Eddie & Hannah,  May God bless you both with happy days and unconditional love.  Pat and I love you both and can't wait for your big day!  Congratulatuions!

The Happy Couple!

Sunday, January 23, 2011

It should be simple... you ask a question and you can get an answer.  Right?  I wish life was that simple.  Life right now is anything but simple.  No answers... just lots of questions with no answers.  Some days are easy, but most are hard.  Today is one of those hard days.  Pat and I woke up this morning and started getting ready for church.  We just felt like something was missing... our baby girl.  We should be getting her dressed in a cute little outfit and bundling her up to go to church with us.  It's so hard not having her here.  Even though she never came home in her short life our house just seems empty without her.  I can't go into her room, it's just too painful.  No matter how bad it hurts we still don't have answers.  Sure, we may get some answers with autopsy reports and even genetic testing... but not the answers we're looking for.  I've had to change my whole outlook on prayer over the past few weeks.  I used to pray for things or certain outcomes and yes, answers to my questions.  I now pray for strength.  Strength to get out of bed in the morning.  Strength to carry on with my life.  Strength to understand God's will.  Strength to keep my faith and to be a person of good character that my sweet daughter can be proud of.  I don't have the answers to my questions, but I do have my faith.

Wednesday, January 19, 2011

I'm constantly thinking about Paige.  I think about what it would be like if she was here, how it would feel to rock her to sleep at night, what cute new things she would be doing and what sweet little sounds she would make.  I don't think these thoughts will ever go away.  I believe that I will always wonder what it would be like if Paige were here.  Yes, sometimes I get very sad and upset but mostly thinking about Paige warms my heart.  She is my daughter and I love her more than words can say.  Please know that when you see me or Pat it's ok to talk about Paige.  Like I said, she is all we think about so please ask us about her. Don't be scared or nervous to bring her up.  If we cry, it's ok.  Crying is part of the healing process and we will be healing for a very long time.  She existed on this earth for two and a half beautiful days and now she is watching over all of us from Heaven. 

Thank you for all of your sweet comments and encouraging words.  You have no idea how much they help!

                            
I miss you so much Paige!  You will live forever in my heart!

Monday, January 17, 2011

Paige's Story

I've been so overwhelmed by the outpour of love and support Pat and I have received from our family and friends and even more so by the prayers and sweet thoughts of complete strangers.  It dawned on me that many may not know Paige's story and I wanted to share just a glimpse of it so that everyone may know our little fighter and the battle she fought in her short life.

My sweet baby girl was not scheduled to be due until January 28, 2011.  She must of known her time was short and coming to an end because on December 20 I had pre-term contractions that took me to the hospital.  Doctors and nurses stopped contractions with shots and I was sent back home.  I returned to the hospital on December 26 again with pre-term contractions.  Again, contractions were stopped with several shots and I was sent home.  Contractions persisted and so I was put on medications to stop contractions through Friday, December 31 when I would be 36 weeks.  Saturday, January 1 was my first day off of the medication.  My persistent little girl wanted and I believe needed out to meet her mommy and daddy before she had to go to Jesus.  I had contractions all day long but I was hesitant to go back to the hospital just to be sent home again.  Around 5:30 that evening my water broke and my husband and I headed to the hospital.
Doctors knew that Paige was coming quickly and decided to do a c-section because her activity was a little low.  At 8:39 pm on January 1, 2011 my sweet baby girl was born!  Unfortunately, her fight for her life would continue and the news of her condition would only get worse over the next 2 days.  Paige was taken to St. Louis Childrens Hospital (home of the very best doctors and nurses in my opinion).  Her daddy accompanied her and I stayed at Missouri Baptist Hospital to recover.  Late that night doctors from Children's called me to break the news that what they thought was only an infection was most likely Leukimia.  My heart was broken to a million pieces at that moment and I don't think it will ever be whole again.  On Sunday I was blessed to join my husband and daughter at Childrens so that we could be together as a family.  Sunday evening Paige was Baptised as she was surrounded by her parents, grandparents, aunts and uncles.  On Monday, January 3 Pat and I had to meet with many doctors to hear the most devastating news of all.  Doctors revealed to us just how very sick Paige was and that her chances of survival did not look promising.  Not only was Paige suffering from AML Leukimia she also had bleeding on her brain that had caused brain damage that was irreversible.  Later that night family and friends poured into the NICU to meet Paige and to say goodbye.  Pat and I were blessed enough to have an entire night with our baby girl.  On January 4, 2011 Paige went to Heaven to be with Jesus. 

In her short life Paige taught us so much about unconditional love and the power of faith.  She is such a blessing to us and we will be forever grateful for the 64 hours that we had her with us.  Not a second goes by that I don't think about her.  My heart continues to ache and I use my faith in God to try and understand the reasoning behind this horrible loss. 

 My Little Angel!

Friday, January 14, 2011

Why?

This small three letter word comes up in every thought and every conversation I have.  Why my baby?  Why did she have to be so sick?  Why do my husband and I have to go through this?  Why do I have to watch my family be in pain?  If there is one thing I have learned through this terrible tragedy it's that we don't always get the answers we want from the big man upstairs.  Paige had more prayers in her few short days than most people get in a lifetime.  I didn't understand why our prayers were not being answered.  We are good people, Pat and I will be great parents and we wanted so badly to bring our baby home.  I just didn't understand why she couldn't get better.  I came across this song yesterday (on a blog of another mother who lost a child) and although it does not give me the answer I want, I have to believe in God's plan and have faith that one day I will undertsand.  Please take the time to listen to this song, it may help you begin your own process of understanding.

http://www.youtube.com/watch?v=S8Gxv9CRRVM

I think I would have forgotten how to put one foot in front of the other without my amazing husband.  He has been my rock and he has carried me through the past 14 days.  These two picture are two of my favorites because they show such true love!




Thursday, January 13, 2011

Sweet Paige


Here is the first of many pictures that I will share of Paige.  In her short life she was photographed a whole bunch!  My breath is taken away by her beauty.  How very perfect she was!

First Post

I never thought I would be the blogger type, but after the events of the past few weeks I can't help myself!  I want the world to know my Sweet Baby Paige!  This blog is also for me, I truly believe that it will help lessen my pain.  I know it won't take the pain away, but my hope is that through this blog I can share pictures of Paige and the overwhelming love I have for her.  I want to share our story and although my baby girl was only given 64 hours on this earth I want the world to know how much she has touched our lives! 

My Sweet Paige, Mommy and Daddy miss you more than you will ever know!  We think about you every minute of every day.  We know you are in the arms of Jesus looking down upon us and we pray that we can be given the strength to carry on.