Mother's Day ~ From the Archives

Not in a million years would I have believed you if you told me I would be writing this post.  This photo sums it all up - it's the urn that holds Lily's ashes.  I must look at it and talk to her at least ten times a day.  We picked it out with our children, they liked the beautiful angel. I see more than just the angel, I see the four stars she is holding - each one represents one of my children. The last thing I do at the end of the day is run my finger over the four stars and tell her I love her.  

My first Mother's Day without Lily was pure hell, we had just lost her a few weeks earlier.  I was still in and out of the hospital - I was physically and emotionally checked out.  I was barely hanging on, the emotions were raw and the emptiness was massive. 

We attended church, the sermon was of course about Moms and all we sacrifice for our families.  My husband kept looking at me as my eyes filled with tears.  His eyes were telling me not  now - not here. After the sermon we quietly waited for the pastor in her study.  She hung up her long robe and sat with us to privately Baptize Lily.  Lily's delivery was so emergent that she was never Baptized.  I took her ashes out of the pink bag I had brought her in - anyone in church would have thought it was a purse, not knowing my daughter was safely wrapped inside close to me -
I unwrapped the pink blanket and placed her ashes on the table.  Tears streamed down our faces as we gently etched a cross on her with Holy Water.

I "gathered" myself in the car before we saw family - and I wore my smile, the one that was expected of me as if I was coping.  Lily was never mentioned.  I know Mother's Day isn't only about Lily, but it certainly will never be the same.  I'm not sure that outsiders realize how difficult Mother's Day is for anyone who has lost a baby or a child. It's isolating - I am beyond grateful for my healthy children but I am so torn with Lily in Heaven.

Mother's Day isn't just about Lily and I don't need anyone to remind me of that. I do celebrate the amazing children that I have here with me.  As their Mother I need to continue to show them that through the darkness there is light.  It's okay to cry -  it's okay to miss her.  It's not a weakness, it's being human.  I am strong enough to show them that it still hurts - some days more than others but it always will.  I have to know that Lily is in a place more beautiful than here.  Not "a better" place - because there is no better place for her but here with us.

Loaves & Fishes

When my kids come home and tell me there's nothing to eat and they're 'starving' I correct them and say...

"No you're not, you're just hungry." 

They don't know what it's like to be starving...

I don't know what it's like to be starving...

I don't know what it's like to open the refrigerator and see nothing but empty white shelves.
 
I don't know what it's like to open the pantry and have it be bare.
 
I can't imagine going to bed at night so hungry I couldn't sleep.
 
It angers me that we live in a world where this is real...

Every.Single.Day.  It blows my mind...

Today we made a difference...

12 Families & 28 kids...

100 sandwiches, 120 bags of baked ;) chips & 100 bags of candies...



 

 

 

 

 

We didn't change the world by any means.  But tonight we knew that there were a few less hungry people in this world. 

Tonight we went to bed smiling, knowing that together we fed 100 people.

4 out of 10 of them being children.  That's right, 4 out of 10 people facing hunger are children. 

Today our children learned a life lesson that can't be taught within the walls of the school.

 

It can only be learned in the book of life. 

 

Play Dough Anyone?

Can you guess what we're making?

Every mom has this recipe in her cabinet but it's been a long time since I've pulled this one out myself!

 

My daughter asked me yesterday if we could make Play Dough.  We couldn't because it's not everyday that you'll find Cream of Tartar in my kitchen cabinet!

 

 But, the best Play Dough is made with it!

 

Mixing and mixing over the stove until it's in a huge clump is my favorite part (NoT)!

 

The kids favorite part?  For sure, kneading the dough. 

What child doesn't like to get their hands all sticky and messy, no matter how old they are!

Add a little food coloring and glitter and you're all set!

 

 

   Either play with right away or wrap it up to get nice and cold in the refrigerator!  It last forever as long as your kids don't try and eat it ;)

 

Lost your recipe?  No worries, here's a great recipe from mommy footprint!

 

{Play Dough Recipe}
1 cup white flour
1/2 cup salt
2 tablespoon cream of tartar (find it in the spice section)
1 tablespoon oil
1 cup water
food coloring
 
Mix first 4 ingredients in a pan. Add water and mix well. Cook over medium heat, stirring constantly, for 3 – 5 minutes. Dough will become difficult to stir and form a “clump”. Remove from stove and knead for 5 minutes–add food coloring during kneading process. Play dough will keep for a long time stored in a covered plastic container or plastic sandwich bag.

Happy Mixing!

Lily's 2nd ♥

 

 

Lily

March 17, 2011

 

 

 

Leading by Example

 

I opened my mailbox today to an unexpected package from my friend Jodi at Peek-a-boo ICU.  I can't wait to show you what was inside but first I want to share a little about this amazing NICU Nurse and advocate in the preemie community!

 

Jodi has been a nurse for the last 17 years and currently lives out her passion as a NICU Nurse in a Level 3 NICU.

 

After working in the NICU Jodi realized that parents needed a place to go where they would feel supported and understood.  She created a specialized site for these parents, appropriately named Peek-a-boo ICU.  Peek-a-boo ICU provides information to parents that have had a premature baby or a baby in the NICU and offers support from those who have been in a similar situation.  Her vision is to empower parents with the knowledge necessary to make it through the tough times that come along with having a child in the NICU.  Through her website she hopes to make it easier for parents and families to understand some of what they may be experiencing and provide them with knowledge.

 

Jodi has been an amazing encouragement to me here at Lily's Amazing Grace.  She was a huge supporter of our NICU Journal Drive.  She donated over 100 pens and bracelets to be added with our journal packages.  She even donated matching journals! 

 

Her most recent gift to Lily's Amazing Grace is this unique Preemie Pathway NICU Necklace that she sent to me.  As a NICU Mom Jodi offered that I keep the necklace or pass it onto another NICU Mom if I wish.

I have chosen to pass this special necklace onto one of the most amazing preemie Mama's I have ever met.  Her name is Christina and she also was blessed with a micro preemie miracle.  She too has walked through the shadow of death with her son Max who is now 7 years old. 

When Christina and her husband Stefano left the NICU with Max he had a tracheostomy and required around the clock care.  Today Max is decannulated, healthy and in the second grade.  They still face their challenges with Max but there isn't a day that goes by where they would change a thing to have Max here today.  The Martini Family is the true definition of resilient and I am proud to know them. 

You can view a video of Max's journey by clicking here.

I've Been Waiting For You...

Anticipating when you were going to slowly creep back in and settle for a while.  You came out of nowhere, just like I expected.

The grief, the anguish & the realness of her loss.  Lily's birthday is in just 3 weeks.  I was wondering when it would knock me down and why it hadn't already.

 

 
I should have known it would come this way - out of nowhere, like it always does. 

So intense, so heavy, so real.  Everything is making me cry, my heart aches without her.  My husband can feel when it hits me before the tears even flow.  I know how much he feels it too.

The last two days at work in the NICU were pure hell.  You could feel it all around us.  The air is different in the NICU when a baby is passing away.   Each and every one of us feels it. 

Today is a rare day when I question how I do what I do.  Knowing there are two more broken parents in this world today weighs heavy on me.

I am going to take in the quiet of my home today...
 
Clear my head the best I can and remind myself that this is our life and we were meant to live it...

We will survive...

I love you to the moon and back again Lily, today & always ♥

Two Micro-Preemie Mama's

This humbling journey that we are on has brought me together with yet another inspirational preemie Mama!  This post is a must read as to how two micro-preemie blogging Mama's finally met and the amazing things my new friend is doing!


As I navigated my way through Alyssa's blog, Our Little Virginia trying to learn more about Virginia and her amazing Mommy I stumbled upon a post titled, "Why We Walk."  Those words ring loud and clear to me so of course I read each and every one.  As I read through their all too familiar message of why they walk for the March of Dimes I came to the end and there were two links to stories that Alyssa wanted to pass along.

Any preemie Mom knows that a link posted by another preemie Mom is totally worth reading, even if it is 1:00am!

The first was a link to a family in Los Angeles whose twin girls were born at 33 weeks, most of us know that 33 weeks gestation is pretty free and clear of "critical" in the land of prematurity, especially to those of us who gave birth to a micro-preemie.  But that is not always the case, especially when the acronym PPHN is involved in the equation.  For those non-medical readers PPHN is Persistent Pulmonary Hypertension of the Newborn, in simple terms - 4 letters that no parent ever wants to hear in the same sentence.  PPHN is life threatening and in this case took the precious life of sweet Josephine Valentine.

The second link was a YouTube video that I clicked on.  When it started to play I almost fell off the couch, it was our March of Dimes video that was created for March for Babies 2012.  Imagine the love I felt to think that this amazing preemie blogging Mama who I didn't even know was sharing our video!  It felt SO amazing!

Hold on, there's more!

 

This past weekend we attended the 'Spirit of Giving' awards dinner for the March of Dimes.  We were receiving an award so I didn't want to sit too close to the front of the room and we carefully picked our seat ;)  My husband left to grab a drink so of course I introduced myself to the woman sitting to the left of me - YUP you guessed it!  Alyssa!  She mentioned she followed my blog, as we exchanged stories I learned that Alyssa is the Mama to a 25 weeker and she blogs too.  Of course I asked her the name of her blog and YUP again, I follow her blog!  Seriously?  Is this really happening?  You can read Alyssa's story here about her micro-preemie Virginia. 

Alyssa is doing some amazing things too.  The one year mark of Virginia's home coming from the NICU is this weekend.  To celebrate they have decided to donate books and LilyWraps to the NICU where Virginia spent the first 124 days of her life! 

It's pretty simple to say that this was one of the most amazing moments since I started blogging!  Lets just say that I am humbled that The Kent's chose us and our LilyWraps to donate for such a miraculous occasion.  Thank you from the bottom of our grateful hearts!