Wednesday, March 30, 2011

Results

Waiting for results of all our tests and Paige's autopsy reports has been extremely difficult.  I didn't feel like I could begin to heal until I had some closure with all of this.  Thankfully, yesterday we started to receive some answers to our questions.  First, we heard from the geneticist and the blood work that Pat and I had done came back negative.  This means that neither Pat nor I had the same deletion in chromosone 19 that Paige had.  The doctor told me that he believes that Paige's situation was just a horrible fluke and not something that Pat or I passed onto her.  Whew!  Thank you Jesus!  We also heard from one of Paige's doctors from Children's and today her team of doctors met with the pathologist to go over the first set of autopsy results.  Most of these results we already knew (the deletion in chromosone 19 and the translocation of chromosone 11 and 19) however the doctor did tell me that my poor baby had the leukimia EVERYWHERE!  It was in every organ, in her blood, in her bone marrow... EVERYWHERE!  How she survived nine months in me and three days on this earth is beyond me?!?!?!?  What a little fighter!  I know how blessed I am to have gotten to hold and kiss my sweet baby.  I wish I could hold and kiss her for a lifetime, but to have her here for even just three days is truly a blessing!  We are still waiting for her neuro report, but it will probably be another month or two before we hear anything.  Got to love the waiting game.  I'm still processing all of this information so I can't truly say how I'm feeling right now.  My prayer is that these results will help my heart to begin to heal from this horrible loss.  

Sunday, March 27, 2011

Delivered

Today my sister Marcia and I delivered another large amount of Paige's Pretties to the NICU.    Along with the hats and bows we also took blankets, booties, and sweaters.  Thanks to one of Paige's sweet nurses we were able to take the pretties up to the NICU.  I had mixed feelings about this.  It will always be hard to walk into Children's Hospital because I immediately think back to that awful day when I was rushed down there to be with my sick baby.  Today I was much braver than I expected.  I thought being on the 5th floor (NICU) I would get choked up and nervous.  I definitely felt nervous, but I kept my strength.  Lydia (Paige's nurse) told me how much everyone loves Paige's Pretties.  She told me how happy it made the mommy's and daddy's.  It gave me a sense of peace with being there.  I don't want to have negative thoughts about Children's Hospital because in my opinion it is the very best hospital filled with the most compassionate and loving nurses and doctors I've ever met.  Starting today I want to have positive thoughts about going back to the NICU.  I want to think about the smiles Paige's Pretties are putting on the faces of many scared parents and how sweet those babies look with the big bows and flowers on their heads.  I truly hope I can continue Paige's Pretties for many years to come!

There are so many people I need to thank.  There is no way I could do this myself!!!  My mom and sisters spent an entire day at my house making bows and packaging them.  My sweet friends Nicole and Jenny continuosly make little booties for the babies. My crafty mother-in-law made beauiful blankets and sweaters for the little ones.  Many great friends and even some strangers have donated time and money to help create and fund Paige's Pretties.  I can't thank you all enough.  It gives me great joy and comfort knowing that we are helping others and bringing some joy in a time of overwhelming grief.  Thank you from the bottom of my heart!!!

Delight yourself in the LORD, and He will give you the desires of your heart.
Psalm 37:4

Friday, March 25, 2011

Paige's "NEW" Pretties

I have said so many times how theraputic Paige's Pretties has been for me.  I love making these bows and hats knowing that they are going to sweet baby girls who are fighting a tough battle.  Baby girls who deserve to get healthy and strong.  Although I don't have the magic tools to make them healthy, in a sense I feel that Paige's Pretties can give them some joy and I believe that my Paige's spirit is with them and fighting the battle right along side these innocent babies.

I'm getting ready to take another large amount of Paige's Pretties to the NICU, however, not only are the baby girls going to be getting bows, some will be getting the newest addition...flowers!  Hand-made flowers!  Thanks to my very crafty, very sweet friend Nicole I have learned how to make these adorable flowers to add to the headbands. They are just precious!!!  Take a look for yourself....



These pictures don't really do justice to how precious these flowers are.
I just love them!

Flowers are not the only new addition to Paige's Pretties my ever-so-talented friends Nicole and Jenny are making the most adorable booties for both the baby girls and boys.  When I say adorable, I mean.... ADORABLE!!!!  They are just the sweetest... here's a peek at the cute booties:


Paige's Pretties and the cute booties will be delivered to the NICU very soon I hope.  Thanks to the "3/4 Club" (some very sweet 3rd and 4th grade teachers from my school) Paige's Pretties will now be delivered in style...
The 3/4 Club gave me this adorable bag to carry all of Paige's Pretties!

Thanks girls, you're the best!
The bag is fully loaded and ready to go, but I need some help.....
Calling All St. Louis Children's Hospital
NICU Nurses....
I want so badly to deliver these to the 5th floor myself, however, each time I come I'm stopped at the 2nd floor security and not allowed to come up.  Is there a way that I can bring these up to the NICU myself??? If any of you have a solution, please contact me... paigespretties@gmail.com
THANK YOU!!!!
Ready for Delivery!

It's so bitter sweet when I finish making a bundle of bows.  I'm so excited to take them to the NICU, but I want nothing more than to be placing them on my baby girl's head.  I miss Paige so much!!!  I still stand outside her nursery door daily just praying that I can open it up and she'll be napping in her crib.  I know that as I make each Paige's Pretty she is up in Heaven watching me with a big bow on her head just smiling!!!

I love you Paige!

The LORD is my strength and my shield; my heart trusts in Him, and I am helped.

Psalm 28:7

 

Tuesday, March 22, 2011

Retail Therapy & Good Friends

One of the many perks of being a teacher is Spring Break!  Gotta love it!  It always seems to come right when you need it most... when you are worn down and so tired that you don't think you can go another day.  This year it has really helped with my transition back to work.  When I returned at the ened of February I knew I only had to make it three weeks before I got another week off.  It made it a lot easier for me.  For the past few years all the girls on my team at school go to the lake for a few nights for shopping, fun and relaxation.  We always have a blast.  These girls have helped me through each and everyday.  They listen when all I want to do is talk about Paige and they can take my mind off everything when I need a break.  They are true friends and I am so thankful they are in my life.  We left Sunday morning and hit the outlet mall in the Ozarks.  We spent all day yesterday relaxing and just enjoying eachothers company.  We just got back a little while ago and I'm so thankful I got to spend the last few days with these amazing ladies.  Thanks girls! 

Retail therapy.... let's clarify now that shopping is one of my most favorite things to do....IF... I get a good deal!  And did I ever!  Obviously, shopping and purchasing will never heal my broken heart or bring my baby girl back but it was a lot of fun!

Here is my most favorite purchase....



I'm only a little excited about my amazing deal! :)
Not my first Coach purse, but the first one I purchased myself!

Besides shopping we also did a lot of my second most favorite thing to do... eat!  I love yummy food!  To burn some of the many calories we ate we played Just Dance and Just Dance 2 on the Wii for 5 HOURS last night!!!  It was so much fun... we had an absolute blast!  I had so much fun...



 I bought the game!  I'm hoping my nieces and nephews will come over to play with me, maybe I can burn off some of this extra weight I have left from the pregnancy. 

Overall, my spring break is off to a great start.  I was able to get my mind off of everything (school work, house work, getting blood test and autopsy reports back, etc...).  I hope to spend the rest of my break with my nieces and nephews and making lots of Paige's Pretties!!!!!

Saturday, March 19, 2011

How Sweet it Is

Since my Paige went to Heaven I know she has touched the lives of so many.  I am tickled every time someone tells me how my angel has impacted them.  It's the best feeling to know that Paige is present in so many people.  Talking about Paige is my favorite thing to do, but I'm her mom....of course I love to talk about her and think about her.  It's the most wonderul feeling when others tell me stories about her.  I wanted to share a few because for one I don't want to forget them and two I thought they may make you smile...

* My friend Nicole has a sweet little girl named Audrey.  Today Nicole and Audrey went to visit Paige's Garden (that's what I call the cemetery).  Audrey insisted on taking Paige a butterfly (melts my heart).  When they left Audrey blew Paige a kiss and said, "See you later alligator!"  I just know that Paige responded, "After while crocodile!"  :)

*At school this week a sweet little boy in my class picked up the picture of Paige that I have on my desk and said, "Mrs. Steinhoff, I sure do miss Paige".  I said, "I miss her too sweetie".  He said, "I sure did love her."  I had to hold back the flood gates!!!!

Little things like this make my heart smile and are so healing to me.  Please don't be afraid to share stories like this with me.  They don't make me sad, they make me so happy to know that Paige is being remembered.

Wednesday, March 16, 2011

My Baby's Mission

I know my sweet Paige was put on this earth for a reason.  Paige taught Pat and I so much in her three days with us.  She taught us to love like we have never loved before.  She taught us to cherish every moment and not to sweat the small stuff.  She taught us not to take eachother for granted.  But most importantly, Paige taught us to have faith.  Faith in our Lord.  I know Pat and I were not the only ones touched by our sweet girl.  Many were drawn to Jesus during this nightmare and I know Paige will continue to bring us all closer to Him.  This poem tells of our Paige's mission here on earth...

Once upon a special day in Heaven up above, the tiniest souls sat at God's feet, surrounded by His love. ‘The time is coming, very soon’, God said, ‘Do not be scared. Your family awaits your arrival, now let us get prepared’.

And so God looked upon these souls, in mute consideration. He knew the life each one would live, He weighed each situation.

The souls chatted amongst themselves, and wondered who they'd be. They knew the day grew closer; soon, they'd meet their family.

‘How would you like to change the world?’ God asked each soul in fun. The chance to change a soul, a heart, is held by only one.

‘I'm going to make the world laugh’, one soul said with a smile, ‘for laughter heals a broken heart, and helps us through each trial’.

‘Then take with you the brightest smile, and share your laughter well’. The soul thanked God immensely, and down to earth he fell.

‘And I'll remind the world to sing’, a sweet little soul told the Lord. ‘I have the gift of a beautiful voice; I can hit every note and every chord’.

‘You’ll have the gift of music then, a voice, lovely and strong. Share your gift with others, and let them hear your song’.

‘I will show compassion’, the next little soul raised her hand. ‘Some people only need a friend, someone to understand’.

‘Compassion is a good thing’, God said with much delight. ‘To you, I will give mercy. You'll perceive wrong from right’.

And so each soul shared every thought, their plans, their hopes, their dreams. And God explained that life, it is, much harder than it seems.

And as each soul began to leave in a scurry of laughter and fun, Heaven became quiet and still, for left was only one.

‘Come sit with Me my little child’, God said with just a sigh. ‘Do you know how many you will touch, in a world left wondering why? Before your life comes to an end, you will know much strife, but you'll teach those who know you, to cherish the smallest things in life.

'And some may only know you through a simple photograph, they'll never hold you in their arms, or memorize your laugh. Some may only know you through the words they read each day, but you'll do something wonderful, you'll make them stop and pray’.

The tiniest soul raised her head up, to touch God's firm, strong hand. ‘Father, I am ready for the life that you have planned. And I will do the best I can without a word or deed. For you Lord, are the planter, and I will be Your seed’.

She could already hear many praying, and although they had not seen her face, they were praying for her safe arrival, they were asking for mercy and grace.

‘What talent do I leave with Lord? What gift do You impart?’

‘All that you will need’, God said, ‘I've placed within your heart’. And so God kissed this tiny child, knowing all that she would be, and whispered as He watched her go...'You'll teach them . . . to love Me'.


Paige, we love you with all our hearts!  Thank you for teaching us so much.  Such a huge part of our hearts went to Heaven with you.  We can't wait for the day that we can hold you in our arms again!
Love, Mommy & Daddy

Every good and perfect gift is from above...

James 1:17

Monday, March 14, 2011

A Present for Daddy

My sweet angel must have some sort of pull in Heaven because she sent her daddy an unexpected birthday surprise... enough snow to call off school.  When our phone rang this morning we were both shocked to find out that it was snowing and school was cancelled for the day.  Pat said this is the first snow day he has ever had on his birthday.  Leave it to Paige to make sure her daddy has a nice, relaxing birthday!

Happy Birthday to the world's best daddy!

Saturday, March 12, 2011

Visits from Heaven

Life has been so busy the past two weeks since I have returned to work.  Not only am I exhausted at the end of the school day, but we have had a lot going on in the evenings.  When I have some free time (which is not much) I try to catch up on sleep.  I'm not sleeping much at night for some reason and so I'm extra tired lately.  Somewhere in the midst of the craziness of life, the attempted naps, and the loads of school work I find that I do have some down time all to myself.  Well, not exactly all to myself, but with Paige.  I feel her around me.  This may seem absolutely crazy to some but I know my sweet baby is visiting me from Heaven.  I feel it in my heart, I know she is near and just loving on me.  It's a sense of calmness and peace that I feel.  I truly do believe that Paige is always with us, but it's in those moments that I need her most that her presence is known.  I know Jesus allows her to walk with Pat and I and watch over her crazy parents.  I talk to Paige all the time.  I ask her for guidance, I ask her for strength, and I ask her for courage to continue life without her.  She has not let me down yet.  In my darkest moments when I don't think I can get out of bed she pulls me up.  When I see other moms with their sweet babies she dries my tears.  When my body aches so bad from missing her she holds me up.  I always thought I would be the one to take care of my baby.  Never in my wildest dreams did I think my baby would visit me from Heaven to take care of me.  But she does! 

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.

Proverbs 3:5-6


My visitor from Heaven!

Tuesday, March 8, 2011

Highlights

Today I want to post about some of the highlights going on and the positive things in my life.  I am having a pretty good day and I feel a little refreshed after a deep cleaning of the house, loads of laundry cleaned and put away and the fifteen lightbulbs that had burned out this past week replaced and shining bright again.  The following are things I am so thankful for....

1.  On Sunday my friends Nicole and LouAnn hosted a benefit spa for Paige's Pretties.  They raised money for me so that I could continue to make the pretty little hats and bows.  What a sweet gift!
2.  Yesterday Paige's grave marker was placed.  Last night Pat and I went to see it.  It's beautiful just like our little girl.  It's bittersweet having her marker.  It's hard to accept that two plus months have gone by since our little one went to Jesus.  We want so badly for her to be remembered forever.
3. Tonight we have our support group.  I really enjoy meeting with this group.  Of course, this is the club that you love, but hate to be a part of.  A club of grieving parents who have lost infants.  Believe it or not, we do cry a lot but we also laugh alot too.
4.  This Thursday my sister, Marla, will be on the Wheel of Fortune!!!  The whole family is very excited and can't wait to see her on TV.  Maybe she'll win enough that I can retire????  Doubt it!  Tune in at 6:30 on channel 5!  Go Marla!
5.  Spring Break is just 7 1/2 school days away!  I'll get to spend some time at the Lake of the Ozarks with my girlfriends from work.  I love these girls...they are the bestest!

I just want to thank everyone for all of the sweet and supportive comments.  I read every one and it really is so uplifting knowing that we have a support team behind us!

Sunday, March 6, 2011

Lost

Life is difficult and is not fair.  I've found that out the hard way.  Bad things do happen to good people and we don't know why.  It stinks.  I'm having so much trouble wrapping my brain around this.  Unfortunately, I think I have allowed it to bring me down.  Deep down.  To say that I'm not having a very good week would be an understatement.  I went back to work last week and although my students are great and can make me smile I have had to come to terms with the fact that life moves on even when you don't want it to.  My "new" normal stinks.  What's normal about carrying a baby for 9 months, delivering the baby one day and then picking a casket out for that same baby four days later?  That's not normal.  What's normal about going to the grocery store, filling a cart with food, then having to leave the cart in isle 9 and run out of the store because you saw another mommy with her baby and couldn't keep composure?  That's not normal.  What's normal about having what I call "my own route" through Target so I can avoid the baby section?  That's not normal.  My "new" normal is no fun.  Lately, everywhere I go something makes me think of Paige.  Don't get me wrong I love thinking about her, but the wounds on my heart are still fresh and very much there.  My heart breaks all over again when I see other mommy's with their babies.  I want my baby.  I want my Paige.  I know I'll never have my "old" normal back because I'll never have my Paige.  I'm praying that I can come to terms with this "new" normal and find the strength to get through each day.  I'm praying that Jesus can give me some peace in my life.  I'm praying that the jealousy I have for other mothers will cease and I can be filled with joy again.  I know my road has just begun but I need some guidance right now.  I'm feeling lost.  Very lost.




 

Thursday, March 3, 2011

Hot Mess

In the words of my sweet, two year old niece, Elizabeth... "I'm a hot mess!"  Today has been one of those days.  I am a mess!  It didn't help that I had practically no sleep last night, so I'm functioning on the caffeine from my QT soda this moring.  I looked absolutely awful going into work today.  I love my co-workers because they tried to convince me that I looked ok, but believe me I looked awful.  My dress needed to be ironed, my hair was thrown back in a very messy pony tail, and my makeup was practically non-existant.  I looked a mess, a hot mess!  My students are so sweet because they know to be gentle with me and they understand I'm sad right now.  They are constantly making me cards and pictures and bringing them up to me.  My students know that Paige is in Heaven, but I forget that there are so many other kids in the building that don't know the full story of Paige.  Unfortunately, I was reminded of that today and it just added to my craziness.  I was headed down the hall to pick my students up from computers.  I felt a little tap on my back and when I turned around there was a little girl standing there.  She looked right at me and asked "Did your baby die?"  I froze!  I was taken so off gaurd.  I just looked at her in disbelief and said, "Yes sweetie she did die."  It took every ounce of strength to keep my composure.  I wanted to curl up in a corner and just cry.  Crazy enough, this is the first time I have been asked this question.  Probably because I've spent my days around family and friends who already knew Paige had passed.  I think today it became real to me.  My baby girl died.  That was hard to type,  much less to say.  I was not at all upset with the little girl, after all she's seven.  A curious seven year old.  I made it through the rest of the day at school.  Then on my way home I stopped at the store to get a loaf of bread.  Easy enough, right?  Not today.  I got the bread, took it to the counter, pulled out my wallet to pay for it and dropped what seemed like 500 coins all over the ground.  I instantly felt all the eyes on me.  Everyone was staring.  I got teary-eyed and the man behind me picked up all the change for me.  Just by looking at me I think he could tell I was having a rough day.  Thank goodness for nice people.  Luckily, I made it home without any other mishaps.  I think I'll crawl into bed and just stay there for the night.  Hopefully, tomorrow will be a better day. 

Tuesday, March 1, 2011

Happy 2 Months Paige Jordan!!!

I can't believe two months ago today my sweet baby girl came into my life.  She is and will continue to be the most wonderful blessing.  Although our time with her was short she has forever changed me.  I can only imagine what my life would be like if she was here with me now.  I don't think a morning will go by when I don't wish so badly that I could open her nursery door and she would be there.  Not a night will go by that I don't long to sit in the rocking chair and sing her to sleep.  As hard as it is to come to terms that these things will never be possible I will be forever grateful to my precious angel.  Paige has changed her mommy and daddy so much.  She has taught us more about love and family then we could ever imagine.  Happy 2 months Paige!  We love you!