This Little Light of Mine

My mom made me think of the song "This little light of mine" the other day. I used to sing it as a child.

We were talking about how it doesn't feel natural to accept grievances on our family's behalf. We don't like for others to hurt - especially not for us. We worry about how we affect others. I worry about if it's awkward for someone to run into me unexpectedly. I don't like the feeling of not knowing what to say (for that person or for myself).

Pregnancy is a pretty public ordeal nowadays. People talk about it constantly, strangers even offer advice at the grocery store or reach out to touch your belly. Friends and family celebrate alongside you the entire time, preparing you and nurturing you. I remember when I found out about some of the issues that Lucy was going to have prenatally - the cleft lip, and the extra digit on her hand - I wished I could hide the remainder of the pregnancy "just in case" there was something more to it. I had many tears and fears throughout the journey. But, alas, I tried to wear my baby belly proudly. I celebrated the little life growing inside me - a true miracle, no matter what.

But, now I'm experiencing the feeling of wanting to be in hiding once again. I thought I could start venturing out, but oh - it's so difficult. I'm not sure how to act. At times I feel like I'm walking around in a fog, just floating through. Other times I'm over-aware. I start questioning everything. I'm curious if strangers look at me and wonder why I look so sad? Other times I wonder if someone I know is seeing me and wondering why I seem so happy? I find myself wanting to duck behind things and take cover so no one sees me.

I wonder constantly about what will come out of my mouth the first time I run into someone who doesn't know what we've been through and asks excitedly, "Oh, you had the baby!?"

Um, yeah, I had the baby... (weird, awkward pause)...

But there is probably something to exposing the wounds a little, letting them air out. I assume there has to be some healing there. I'm trying to realize that in time getting out will allow my light to shine out into the world a little brighter. (Again, it's so fitting that Lucy's name means "light"). Slowly but surely I will get there.

This little light of mine, I'm gonna let it shine.

This little light of mine, I'm gonna let it shine.

This little light of mine, I'm gonna let it shine.

Let it shine,

Let it shine,

Let it shine!

Hide it under a bushel... NO! I'm gonna let it shine.

Hide it under a bushel... NO! I'm gonna let it shine.

Hide it under a bushel... NO! I'm gonna let it shine!

Let it shine,

Let it shine,

Let it shine!

And yes, I think the repetitive nature helps the message stick, so I wanted to type each line out! ;)

There is nothing to hide. Some things are private, yes. And how well you know someone dictates how much you are going to share. But I never want to feel like I have to hide myself (or my child) from this world. I want Lucy's light to shine through me. And more importantly I want God's light to shine through me.

Seriously love this kid.

What would we do without this little wonder running around?

Me-oh-my... she brings us smiles!

Avery is a riot, always keeping us entertained...

and she is currently enjoying being spoiled rotten.

You want ice cream?

OK!

A trip to the park?

OK!

To watch Mickey Mouse?

OK!

A chocolate chip cookie?

OK!

A bike for Christmas? (this was an actual request last week)

OK!

A PUPPY?

Oooooh, wait a minute... you almost tricked me.

Avery is also the most tender and comforting child. I am constantly in awe of her lovingness. She is just so intuitive and knows how much we need the extra hugs, cuddles and kisses right now. She tells us she loves us. She rubs our backs and says "it's ok." Avery is a clear reminder of God's love for us.

God is good.

Yes, God is good.

The thing about being a Believer

It's a scary feeling when you talk to family and friends that are heartbroken for us - I hate that people are feeling so much pain - so much of OUR pain has become theirs. I can literally feel the heartache through the emails, phone messages and conversations. I have always considered myself quite "talented" at offering a listening ear, giving advice, praying for and loving others when they are going through a hard time. I whole-heartedly enjoy offering that support and love to others. I find that I'm definitely not-so-great at accepting it for myself, though. I'm working on it. It certainly is nice to know that we don't have to walk through any of this alone.

Some people have mentioned that they are amazed at my faith through these tough times. It hit me one day that it may be easier to cling to faith when you are going through a tough time - you HAVE to. It is through our struggles when we are reminded of God's grace, love and power. We are reminded that we are not in control. We tend to call ourselves "believers," but it is when a challenge unfolds that you will be put to the test. As a "believer" you have two choices: to keep on believing or to walk away from that belief forever. And I know I can't do the latter. So my faith HAS to grow - it has to change. It has to evolve.

Now, I've always found comfort in scripture, but I am somewhat reliant on it right now. I have been picking up the bible over the years here and there, but now at times I cling to it, even fall asleep with it some nights. Scriptures literally collide into one another, I can't read the words quick enough; they jump off the pages at me even when I'm not looking. It is wild!

Sometimes I don't feel very strong, sometimes I don't feel like believing, sometimes I think I could give it all up - but when I relax in Christ's presence, the truth finds me.

"In returning to me and resting in me you shall be saved;

in quietness and trust shall be your strength."

~ Isaiah 30:15

Please feel free to share with me any scripture that reminds you of God's power, peace and love. Thanks!

(BTW, the latest photos are credited to my amazing and talented husband!)

Giving thanks in the morning

Jeff went back to work last Monday, and he was definitely ready to get back to some sort of "routine." I was too (well, kind of), but there really is no "routine" for me at the moment. And nothing is what I thought it would be. My body, my mind, my soul - it was all prepared to nurture a new baby. My Lucy. What is left is an overwhelmingly empty feeling.

So, before he leaves for his work day, the hubs comes in to wake me up and say goodbye... and the poor guy gets whatever energy I'm throwing out at the world first thing in the morning. It's always been questionable as to what mood I will wake up in, but now ever so much more. Sometimes it's a smattering of tears, sometimes it's a peaceful reflection, sometimes I feel like I just stare into space. It's unpredictable and confusing.

What is your first thought when you wake up each day? I've never thought too much about it before now, but my emotional side seems the most vulnerable in the morning for some reason.

Some days I wake up really sad. Some days I wake up feeling "ok" - then I may feel sad that I feel "ok." Some days I may even wake up thankful. But the reality is, I never just know what is going to hit me the second I stir in the morning. And ideally I want to harbor good, positive and hopeful thoughts.

I read recently that you should spend the first 30 minutes of your day doing something that makes you happy and positive; it can set the tone for your entire day. So, because I've been lacking in the happy and positive department lately, I've started out just simply trying to be thankful. Trying to recognize the simple and wonderful things that I DO have.

I'm thankful for my health. Thankful for shelter. Thankful for my job. Thankful for an amazing support group of family and friends (seriously what would I do without you people!?). Thankful for a supportive, caring husband and healthy, happy daughter that fill my home with love. I'm finding that if you count your blessings, you feel fuller. It fills the void that is left behind. What we've experienced in loss the last several weeks doesn't feel "right" in so many ways, but I can spend those early moments each day trying to be thankful. What you realize in doing this sometimes is that the list goes on and on... It can be quite difficult to count your blessings, because there are just SO many!

Now, believe me, it's not always easy. Sometimes I squeeze out an "I'm thankful for this day" (with a lackluster attitude) and move on because that seems to be all I can muster. But I try.

At times I can't even find the strength to pray because I'm not really sure what I'm praying for. Peace? Healing? Strength? Transformation? Again, an epiphany of sorts - some days it is easier to pray with thanksgiving and let God provide you with what you need.

"O give thanks to the Lord, for he is good, for his steadfast love endures forever."

~ Psalm 118:29

Let LIGHT shine out of darkness

We now have some information available on how you can help us support several causes that were important to us during our daughter Lucy's short life. You can read more about our story and the causes we aim to support through her obituary HERE.

Or, you can go directly to the donation page we created to support the Neonatal Intensive Care Unit (NICU) Fund at the Levine Children's Hospital where Lucy spent most of her life HERE.

"For God, who said, 'Let light shine out of darkness,' made his light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ." ~ 2 Corinthians 4:6

In Memory of Lucy

God took our angel Lucy Isadore to his heavenly Kingdom on July 25^th, 2011 at 5:46 a.m. While she was only with us for less than 6 full days here on earth, the impact she had on our lives was truly amazing. We experienced a range of emotions and love that we could never have imagined possible without God’s love and protection. We have experienced and continue to experience God’s grace through the prayers of many as we strive to find peace.

The night Lucy was born - 7/19/11

Lucy had a great evaluation after her birth and we were relieved and hopeful. We knew she would get genetic testing after birth because of the cleft lip (which we knew about prenatally) but at this point there was so much joy. We didn't know the sex of the baby during pregnancy, so when it was revealed that we had another baby girl, we were both shocked and excited. Lucy was a magnificent surprise!

Our precious angel – 7/19/11

When I took the above photo of Lucy late into the night of her birth, I had no idea of everything that was about to unfold in the next several days. There was the obvious cleft but we had done so much research on cleft surgeries and procedures that we looked past this almost immediately. She also had a tiny little flap of skin on the outside of her left hand – but it seemed so minor and was totally fixable. You would have never known otherwise (by looking at her) that there was something much more significant going on with her sweet perfectly made form.

"I praise you, for I am fearfully and wonderfully made." ~ Psalm 139

Lucy got very quickly sick on Wednesday morning. By noontime on 7/20, she was admitted into the Neonatal Intensive Care Unit (NICU) at Levine Children’s Hospital and I was in shock. I think we still had the hope that they would call and tell us that everything was ok, it was all a fluke. We went and sat with her several times that day, but it all seems very blurry. Doctors and specialists seemed to be in and out all day. We didn't understand some of the terminology and we certainly didn't know what questions were the right ones to ask!

Lucy in the NICU - 7/21/11

While Lucy was in the NICU they kept uncovering things that were “different” about her when they did scans and tests on her. Many things were very “fixable,” but it was clear that with all of the factors put together the chances of them finding chromosomal condition were getting higher and higher. I was released from the hospital on Thursday, 7/21. We had to leave Lucy in the NICU’s care, and we were just starting to wrap our heads around things. Because of the ventilator and monitors, we were not allowed to hold her, and it was such a sad feeling, like we couldn't care for our little girl. I did get to change her diaper though, which was a big deal. (Never has changing a diaper been such a thrilling task!)

Lucy was very responsive to our voices and that made us feel really great and gave us hope. Most babies seem to take to Jeff very easily, and Lucy was no exception. She responded so well to his voice. She would shift around or turn her head when she heard us near her.

Mommy gets to hold her! - 7/22/11

We were able to hold her the night she was born, but hadn't in what seemed like FOREVER. By Friday, Lucy has adjusted well to the ventilator and her breathing had stabilized. She had a really great night/morning so I got to hold her on our visit around noon this day! Look at that precious blondie of ours! I think Lucy had more hair at birth than Avery had on her first birthday! She was opening her eyes and looking at us too. My heart was melting in the photo above - so in love with her!

The night of Lucy's diagnosis - 7/22/2011

The above photo was taken Friday evening. We were called back up to the hospital at 5:30 p.m., and by 7 p.m. we learned of Lucy's diagnosis of Trisomy 13. We knew Lucy was special and unique, but she was a perfect doll baby... her perfectly round head, her shiny blonde hair, her long torso, her long legs and thin, beautiful feet. She would open her eyes and gaze into ours. She knew us; she recognized our voices. When she got mad, she’d kick her legs and push herself way up out of her little foam-like pad she was sleeping on. She was strong! When we thought about how we'd picture a baby with a genetic disorder it wasn't Lucy. She wasn't sickly looking, she wasn't weak. She wasn't deformed. She was perfect... and the cleft was NOTHING. It could be fixed. We almost felt silly at this point for worrying about it in the first place!

But Friday night the puzzle pieces came together when the doctor told us the news - Lucy's diagnosis from the pediatric geneticist. Our worst fears were confirmed. Lucy had a genetic disorder that couldn’t be fixed and couldn’t be reversed - Lucy had Trisomy 13. It was determined the second she was conceived and there was no way we could have changed it. Though completely devastated, it wasn’t a surprise at this point. Through the tears of sadness, we also found that we could breathe easier just knowing they would stop their poking and prodding her.

There is no doubt that God's peace was there with us. Trisomy 13 is described as "not compatible with life." But yet, here was this precious gift - here was the little LIFE. Lucy was not going to be with us long, and the doctor informed us that the strategy of her care would change. We were going to focus on making Lucy comfortable and loved from that point on and his goal was to make us feel like a family. That’s right, we were just simply going to be a FAMILY. I love the quiet moment pictured above between Daddy and daughter, captured that night.

Lucy catching some rays - 7/23/2011

Everybody needs a little "sun." We loved walking in on Saturday morning to see Lucy catching some rays under the UV lamp, and found comfort in knowing that even "normal" babies need to be treated for jaundice. Our little Lucy got a bit jaundiced too. We loved seeing her in her faux baby "sunglasses" and the peace in this picture. She was thrilled when we got there and she could take those "shades" off though!

Visitors! – 7/23/2011

Lucy got her first visitors (aside from Jeff and I) in the NICU on Saturday. Big Sister Avery came to visit along with her Nana and Papa Bricker. Avery brought Lucy her lamb toy and sang her a passionate version of “Twinkle, Twinkle Little Star.” She also enjoyed singing Dora the Explorer songs to the nurses and jumping around entertaining whoever would look her way. She is QUITE the performer. Lucy actually seemed a little annoyed. Sisters!

Love, Love Me Do – 7/23/2011

Jeff and I came back to see Lucy Saturday night with my parents. Pastor Bill Roth joined us to baptize Lucy that evening in her NICU bed. Afterwards Jeff and I stayed to visit with her. I sang Lucy songs like “Love Me Do” and “Jesus Loves Me” along with “Amazing Grace.” This was the last day we saw Lucy open her eyes to look at us. We have so few photos with her eyes open, because most of the time taking a photo of her with them open with the absolute LAST thing we were thinking. We were just gazing back at her! This above photo is one of the few we have.

I read Lucy a letter I had written to her early that morning and she focused on me with both eyes the entire time. Another memory made; another peaceful and perfect moment.

Comfort and Love – 7/24/2011

Lucy came off the ventilator around 2 p.m. on Sunday. I held her and Jeff was right by our side. We had no idea how it would go, we were just hoping for a moment with her, praying for longer. Our tough little girl had more bonding time in store for us… she did fine when she came off the monitor. It was pretty clear though that the doctors and nurses were worried she would not make it very long. We were very focused on making her feel perfectly comfortable and loved. She seemed to be so happy to get rid of that ventilator and we were so happy to see her face without that tape across it!

Remembrance Photography – 7/24/2011

Once Lucy was off the ventilator and her breathing was fairly stable, the nurses arranged for us to have a volunteer photographer affiliated with the Now I Lay Me Down To Sleep Foundation come to do some remembrance photography Sunday afternoon. The above photo was taken after we got Lucy all dressed up in a pretty white gown for the photo shoot. We had to keep her wrapped up tight to keep her very warm once she was out from under the heat lamps. Avery joined us for the photo shoot and for several hours at the hospital, and this is the day I will remember us truly feeling like a family. They put us into a comfortable room at the hospital with a double bed and we were able to just simply “BE.”

We won't get the actual photos back for a couple weeks, and I know it will be tough to see them, but I am so glad we were able to make some memories together as a family.

"I thank my God every time I remember you." ~Phillippians 1:3

Saying Good-bye – 7/25/2011

The above picture was taken in our room on Sunday night - just some more bonding time while Lucy was doing so well. Soon after we were advised to stay in the “boarding” room at the hospital overnight. My worse fear was getting a call in the middle of the night, and Lucy’s vitals were starting to get worse, so we decided to stay that night. We are so glad that we did. We kept her with us until almost midnight and then sent her with her nurse so we could try and get a wink of sleep. I don’t think we did; I honestly don’t remember.

We got "that" call in the middle of the night, and thankfully we were just steps down the hall from Lucy. Lucy was brought to us around 3:30 a.m. and once we realized that a farewell was imminent, the doctor made a decision to take away most of the tubes and wiring so we could see every last inch of her in her final moments. We asked Lucy to watch over us and her big sister Avery; we told her we’d love her forever. We loved on her, prayed over her, sang and chatted with her before she passed away peacefully at 5:46 a.m. in our arms. God never left our side. We felt His presence welcoming her lovingly as we let her slip away. We felt our hearts crashing to the floor, and His peace filling up the massive void that was left behind.

The New Normal.

In the last several days we’ve had to make decisions you never think you’ll have to make. The difficult times are not behind us – this healing will take time. But I believe in divine purpose. We had what we’ve called our “earth angels” beside us every step of the way. A nurse that reminded us the “The Lord giventh, and the Lord taketh.” A doctor that prayed with us several times and told us he didn’t believe in “chance.” One thing is clear - Lucy was meant to grace this earth, and she was very much meant to be a part of our family.

"And we know that in all things God works for the good of those that love Him, who have been called according to His purpose." ~ Romans 8:28

Our journey as a family continues. We are adjusting to a “new normal.” Part of our healing process is the desire to give back to some of the great people and programs that were instrumental in helping us feel like a true family during our time with Lucy… They have also given us the tools and resources so we can continue to blend Lucy's life into the rest of our lives and explain to Avery the special relationship that she and Lucy will always have. We will pass along several web links in a separate blog post if you desire to support some of the people and programs that have supported us.

We appreciate all the prayers, love and support. There will be sadness that haunts us. There will be paranoia that creeps in. There will be medical bills bearing her name. There will be songs on the radio that remind us of our Lucy. And we won't physically have her here to hug and hold. Lord knows it won't be easy. But our hope is only that blessings of love can come from those who hear our story. The story of love that rings true through all our pain and sadness.

"I will turn their mourning into gladness; I will give them comfort and joy instead of sorrow." ~ Jeremiah 31:13

Our sweet Lucy

We are thrilled to announce our newest little family member

Lucy Isadore White

After a scan in Dr. Stephenson's office on Monday at lunchtime, I was recommended for delivery because Lucy fell below the 10th percentile in size. They estimated her size at about 5 lbs 1 oz and I was so worried. We went in to the hospital around 4 p.m. that day to start the SLOW, but steady process. Avery's Nana and Papa hit the road immediately so they could be with her that night. It was a frantic couple hours to say the least!

The induction process was pretty smooth and uneventful for the most part. I was anxious to meet our sweet little one, and soon enough SHE was here!

Our precious gift from God arrived on Tuesday, July 19th at 6:07 p.m.

weighing 5 lbs 10 oz and measuring 18 3/4".

Me and my girls!

Proud big sister Avery practicing gentle touches with Nana's help. :)

We can't say it enough - Lucy is an absolute angel. She arrived smoothly and quickly once she was ready, and was calm and peaceful upon delivery.

Lucy is also somewhat of a firecracker - very strong and "opinionated" for a teeny little thing like herself. But when she hears her Mommy or Daddy she calms - I love when she just gazes at me. Even with greasy hair and blotchy face a mama can feel beautiful. She responds to music and singing the most. She loves it!

Our family of 4 the night Lucy was born:

We LOVE Lucy more than words.

It's been an eventful and tough couple of days, and I will be glad to share our story - soon. Our journey is still unfolding. We are wrapping our head around things that we've learned about Lucy since her birth slowly, but surely. God is with us, and is bringing us a sense of peace as we learn more and more about our new baby girl. She is perfectly unique and very special - it is clear she is going to touch the lives of many.

The name "Lucy" means "light" and when we saw her beautiful blonde hair and tiny composure, we knew in our hearts that was the name for her. Her middle name, "Isadore" was my great-great-grandmother's first name. My great-grandma Isadore Parker was the most faithful, God-fearing and inspiring woman I've ever known. It is no coincidence that her name spells "is adore" - Lucy is adored just like Isadore Parker.

Oh, little Lucy. We ADORE you.

We thank God for you.