Thursday, August 29, 2013

Return to Zero Submission

I talked about the film Return to Zero here

They are asking for families to write the stories of their children, and will actually select 80 to publish in their book.  You can learn more here

This is my submission:

Dylan, and Noah's Stories

My husband and I were married in September 2010 and knew that we wanted to start a family right away.  In December, we found out our family would be growing that following September. The pregnancy was completely normal.  I had morning sickness, with the full strength cravings. I avoided the things I should have and did everything I was suppose to do. We were SO excited to learn if we were having a little boy or girl as we walked into our 20-week ultrasound. Little did we know, it would be the worst day of our lives. We learned that our son, Dylan, would be facing many obstacles.  They noticed an issue with Dylan’s eyes and intestines, along with a cleft lip and palette.  Each defect on their own would be manageable, some even repairable. The issue was why all of them all at once.  The doctors knew there would be surgeries, but we wouldn’t know the extent of Dylan’s challenges until he arrived. The doctors tried to prepare us as best they could, and even offered aborting my pregnancy. I told those doctors, that even if I only had minutes or days, I would be carrying my baby as long as he’d let me. He deserved that much. And in all honesty, I was in love when I first got my positive pregnancy test. Dylan was born on August 14, 2011 via an emergency C-section. He let out two cries so that we knew he was there, and then the NICU team rushed him away to work on him. I was able to see a picture. I was unable to see my sweet boy until about 36 hours or so, because I couldn’t walk after surgery. Knowing my baby was sick and that I couldn’t go to him was gut-wrenching. Dylan couldn’t breathe on his own and needed to be intubated and hooked up to a ventilator.  His chest formed poorly that would not allow his little lungs to work properly. The moment I was able to see him, I fell head over heels in love. 
Throughout countless blood draws, assessments, diagnoses, and eight surgical procedures, his little body and enormous spirit forgave, and loved unconditionally. If he was startled or scared he'd begin to cry for a moment just to let you know, and an instant later, would stop and forgive. Dylan showed us life and love in the absolute purest form. He knew no race, religion or of any matters/beliefs the rest of us allow to get in the way. He is the definition of forgiving and patient. Dylan is the strongest person I know, he fought and fought, but in the end, his little body just couldn’t.  With the help of palliative care at our wonderful Children’s hospital, we brought Dylan home on October 17th.  We were able to take him outside where he was able to feel the sun on his face and feel his little hand wave through blades of grass. He was able to met his cat and dog and be held by all his grandparents, some great grandmothers, and his aunt and uncle.  Dylan passed away later that evening in my arms after my husband was telling the doctors how we wouldn’t have changed a thing, that Dylan was perfect just the way he was.
The doctors were not able to give us a definite reason why Dylan had the genetic disorders he did.  We did all the routine tests and everything came back normal. We are dealing with an unknown genetic disorder. The best way to describe it is to think of a huge downtown library with tall rows of books. Each row of books represents a chromosome.  Know go find the missing word.  Without me telling you which row, which shelf, which book and which page.  This isn’t a “can’t you test for it” kind of thing. The genetics team we are working with are trying VERY hard to locate the issue and gave us a 25% chance of reoccurrence. (25% meaning it would be a recessive genetic disorder meaning that both my husband and I would have the same genetic defective-which by itself is 1 in a million).  It could also be a fluke, a one time DNA mess up. The genetics team didn’t think that this was what we were dealing with, but again, they couldn’t tell us much so we were not going to give up hope that it was a fluke.
What did we want more than anything? A biological baby between the two of us.  So try again we did, and in September 2012 we found we were expecting.  We were excited and were terrified.  We knew right away that regardless if we were having a boy or a girl, that Dylan would be their middle name. We later found out, at our 12-week ultrasound the doctors thought that our baby might have the same intestinal disorder, but we needed to wait until he/she was bigger.  We were worried half to death, but wanted to continue on enjoying the pregnancy by giving into the chicken finger cravings and by taking the weekly bump pictures.  We went back in a few short weeks later; only to find out we would be re-living the same nightmare. Noah was found to have the same birth defects and genetic anomalies as his big brother, Dylan.  We knew that we didn’t want to put Noah through everything that Dylan did.  All those surgeries and procedures… We were told that we had a 50% chance of Noah surviving the delivery and prayed constantly for the opportunity to meet our son. Those prayers were answered on January 30 when Noah was brought into the world. We were blessed to have just under 2 hours with Noah.  Long enough to tell him over and over that we love him.  Long enough to kiss him all over.  Long enough to hold him. 

My husband and I try every day to keep going, to be strong.  We want to be better people and to honor our children the best way we can.  We tell their stories to anyone that will listen.  They inspire us daily. We have raised money for the March of Dimes and Children's Hospital of WI.  We have donated food and care packs to our local Ronald McDonald House and the NICU. We do good things in their names to make them proud and will continue to do so until we meet them again. They live on in our hearts and we feel their presence everyday.

Tuesday, August 27, 2013


School starts tomorrow!

Things I *need* to work on:

-Finishing up my Return to Zero submission
-Finishing up my poppy painting (ALMOST there D!!)
-Finishing my thank you's (yes...I am a horrible person...I get side-tracked)

 Finding another 3-4 hours a day would be pretty awesome...
But a girl needs to sleep

Friday, August 16, 2013

Help Us Support Children's Hospital!

Just like last year, Patrick and I have formed an Al's run team to help raise money for Children's Hospital of Wisconsin.

The run is an 8K, or 5miles and the walk is 3 or 5 miles it's up to you to choose :)

If you want to join our team to walk or run with us, please go to our team page here:

Then you scroll down to the team list (which right now, only has Patrick and myself!) and click on JOIN TEAM.

The LAST day to join our team is August 28th!!

If you can't be here to run or walk with us, but want to support our team and CHW please visit our team page.

Our page can be found here:

You can then click on support Jen and it will redirect you to the donation page.  You can even pick where the money you donate goes! Like the Neonatal Intensive Care Unit ;)

Here are some of the pictures from last year :)

I'm pulling on my Dylan button for the camera :)
So everyone could see WHO I was running for

We were able to get a design on the backs of
our shirts since we had at least 10 people on our team.

So please don't hesitate to come run/walk with us!! We'd love to have you!

Thursday, August 15, 2013

How we celebrated you...

Hi sweet boy! I hope you got your balloons! Were you watching for them?

I HAD to buy this one when I saw it! How cute is this truck balloon?

McGraw family knows why I HAD to buy this one too ;)

Since we already got two, why not a third? :)

Daddy said a few things to you and then, we let them go and fly up to you.

Then we went out for pizza at Pizza Man.  We ordered pizza with extra sauce, just the way you liked it. 
We were laughing and smiling, thinking about you.  Remembering the little things that some might tend to forget.  The day daddy combed your hair straight up and then in a business man style. 

It was a good day.  I miss you so much baby.  It's hard to explain, I know other mommy's would understand.  It's like a part of me is gone. It will never be filled by anyone or anything else.  No one or anything will ever replace you.

I love you to the moon and back. xoxo

Wednesday, August 14, 2013

Happy Birthday Dylan!

My sweet boy,

Today my darling, you would be turning two.  And you know how much mommy likes birthdays :) Do you remember how I would decorate your pod (room) every week for your weekly birthday while we were at Children's hospital? And we had those monthly photo shoots when you reached one month and then two. You looked so handsome in your onesie ties, just like daddy.

Your birthday present came early on Monday.  I got you your very own copy of Clifford goes to the hospital. I know it was one of your favorites while you were in the hospital.  I can still picture your sweet face and raised eyebrows when I would make my voice change for the different characters.  After we were finished, I'd rock you to sleep and either sing to you or just soak you up by smelling and kissing you all over. Those are some of mommy's favorite memories.  I could've held you forever.

Baby, I can't promise that I won't cry today especially since I've been crying for at least a week leading up to today.  I think of all the things I want to do with you today.  I would have loved to get up extra early and make special pancakes and bring them to you to eat in bed. I wish I was able to throw you a birthday party, make you a special cake, and sing and dance with you in the kitchen. You're old enough now where you would actually get joy ripping your presents out of the paper, I would have loved to see your little face light up with each gift. I would've decorated your room with balloons and crepe paper, and made a crepe paper barricade for you to run and rip through.

I can't help but picture you running around with Landon and Gabe. You three would have been the 3 musketeers without a doubt.  I think of the playdates you would be having with them, going to the zoo, a baseball game...

I can't help but think of you being bossed around by Lily and Iris (bossed in a loving sense the way little girls can boss ;) ) and playing house and school. Running up and down the block with all the kids.

I can't help but think that your little face would light up like Isla's, when you would see your puppy, Vedder, rolling around on the ground or chasing a ball.

Mommy and daddy are going out for pizza tonight to celebrate you.  While you were in mommy's belly, pizza was the only thing mommy wanted to eat (so I'm guessing it was one of your favorites too). With extra sauce! We have our balloons ready to send up to you also, so make sure to keep a look out for them.

We've been getting cards all week telling us that people are thinking about us and praying for us.  But an extra special one came yesterday.  It was a birthday card for you.  It tells you how you live on in their hearts (you know you do in mommy and daddy's, but look baby, you live on in so many more).  And that you inspire them everyday and how your sweet smile will shine on within them. I am so proud of you honey.  You can't imagine the impact you have had during your short time here on earth.  You've made mommy and daddy become better people, reaching out and helping others.

I always knew that I wanted to be a mommy, and you were the best little boy a mama could ask for.

I miss your smells.
how your hair felt falling through my fingers when I washed your hair
How your little hand would grasp onto my finger and not let go
Those cheeks that went on and on for days
And of course your special pair of eyebrows that knew how to work the nurses and staff and Children's hospital.

I'm going to ask Dave & Carole to play one of your favorites today.  You had a soft spot for Clapton, and would always have a little dance party in my belly whenever you heard Layla. So if I hear Layla today, I'll know it was meant for you.

I know you'll have the birthday party up there, after all you've got your baby brother and Taylor too. Not to mention all of the great grandparents that will no doubt be spoiling you! I know your great uncle Mike will whip up a great feast for you of whatever your little heart desires, he's such a wonderful cook! and great Grandma McGraw likes baking, so I'm sure she's got something very special planned. Make sure to share your cake with Taylor and Noah.  I'm so happy you have each other (I'm not, but I know you understand). But it doesn't make me want you here with me any less.

Somehow, we woke up at 3am this morning.  I'm sure you had something to do with that ;) We fell back asleep, but we both remembered 3am two years ago when you came into this world. Thank you.

I love you to the moon and back forever and always muffin.

Wednesday, August 7, 2013

words can be healing

Someone shared this poem and picture on my facebook page today and I haven't been able to stop crying.  Emotions are high as Dylan's second birthday is coming up.  This is so beautiful that I had to share it.

"My Dear Mother:

I did not die young.

I lived my span of life

Within your body

And within your love.

There are many

Who have lived long lives

And have not been loved as me.

If you would honour me

Then speak my name

And number me among your family.

If you would honour me

Then strive to live in love

For, in this love, I live.

Never ever doubt

That we will meet again.

Until that happy day

I will grow with God

And wait for you."

Author Unknown

(It came from the miscarriage and pregnancy loss page on facebook)

Tuesday, August 6, 2013


So we have been busy lately :)  Busy relaxing :)

We went to my cousin's wedding in North Carolina, and took some extra time just for ourselves to go to the beach for a week.  It's been awhile since the two of us went off to spend time doing nothing, and it was wonderful. We made it to the beach with a cooler of beer every day we were there. We ate some amazing seafood and sushi.   Even had a few friends meet up for dinner or a day at the beach :)

at the wedding reception

already REALLY miss this!

The next vacation isn't planned yet, but I already can't wait!

It's important to be reminded of what is really important in life.

We got home from vacation and wanted to turn around and go back.  Returning back to reality is a shock to the system.  And when there's something waiting there to slap you in the face... you need to remember your TRUE support system.  I am blessed with an amazing husband.  Sure he drives me crazy when he's constantly biting his nails, and of course we have disagreements... we are two different people, I mean come on! Show me two people that agree on everything that aren't completely boring!

He might drive me nuts at times (and I him) but he's my best friend.  We are open and honest about everything (even if it hurts) and we work for our marriage everyday.  We don't take things for granted, we cherish the little things.

But aside from my hubby, we are also blessed by the amazing family and friends that we have.  We were able to witness my cousin (more like big brother) get married to a super sweet gal and take part in their special day.  We went up to the McGraw reunion to spend time with that side of our family.  I pretty much missed both bonfires because I was in some pretty great conversations that I didn't want to blow off.   Hearing them tell us how they love us, pray for us, and that they talk about and pray for our boys with their children made my cup runneth over... we are so blessed.  I came home to a mailbox full of cards from friends telling me they are thinking about us.  I have a feeling that a little bird told a few of them that I was having a hard time recently... and they turned around to send me a little note reminding me that they are there, supporting and loving us.

Just take a moment today to think about all the love and support you have surrounding you.  You might not realize you have it, but you do. Don't take it for granted.