Finding Sunshine Again

Ever since Lily Grace was given a terminal diagnosis, one of my prayers to God was to hear His voice in a new way to help me find comfort, peace and understanding.  I am definitely learning.  Sometimes I get thoughts from God while I am driving, in the shower or laying in bed.  Other times I hear his voice through people that God places in my path.  I chose to write this post about opportunity, because it has been awhile since I updated!  I Google searched opportunity and corresponding bible verses to get extra insight on this topic and one result in particular caught my attention.  The topic headline read, "Finding Sunshine Again."  I loved that!  I clicked on the link and was hooked for almost an hour reading a blog from another Mommy who had lost her baby too soon.  God used this woman who shares the same pain as I do to reinforce the fact that, "God will never leave us or forsake us."

The mothers name is Amy and I began reading her blog posts from the beginning, which just happened to be from the month of December.  Amy freely shared her thoughts and feelings on going through their first Christmas since they had lost their son.  It was painful yet promising.  Amy writes about Christmas day, "There were many moments that day which took my breath away, moments where my heart felt that empty pit of Jeremy's absence in our family.  I tried to focus on the idea of him celebrating Christmas with Jesus in heaven, oh what a sight that must be!  While this was a beautiful image in my mind, I still missed him greatly."  With Christmas approaching fast, I have thought numerous times about how wonderful that day must be in heaven.  Can you imagine?  Honestly, sometimes I feel cheated and I know that is wrong.  I feel that life would have been easier if God let Lily Grace be here for at least one Christmas.  I wanted to take her pictures with red and green tutus and Santa hats, I wanted to give her a stocking, but how selfish am I?  I quickly get reminded of the pain that she experienced here on earth, and in heaven there is no recollection of that.  She gets to experience Christmas with the one and only Jesus!  Knowing that, we are remembering all the good times we had with Lily Grace and taking the opportunity to enjoy the true meaning of Christmas this year.  I made Christmas cards with pictures of the fun times in 2011 and we decorated a tree in memory of Lily Grace.  We are choosing to have a wonderful Christmas season! 

On a lighter note...(I think it is safe to put the tissues away!)  I took a step in a direction that I would not have normally taken.  I went back to school!  The saying goes, "when one door closes, another door opens."  Ever since high school I wanted to attend beauty school.    Instead, I chose to pursue a bachelors degree in business management, which I still do not regret.  The opportunity arose and with a little research, I made the decision to go to Empire Beauty School in Hanover and get my license in cosmetology.  I started two weeks ago and love it!  We are learning hair cutting first and I just can't get enough of it!  I am not sure the exact path I will take in this field, as well as in life, but I know that I am headed in the right direction.  

Michael and I also have the opportunity to go to a retreat in Tennessee for couples who have lost children.  I know I have mentioned Nancy Guthrie before, but I am super excited to meet her and her husband as we take a weekend for sharing and healing.  It is said that 75% of married couples who lose children end in divorce.  That is scary and we choose not to be one!  Nancy and her husband address many topics and issues that couples face while going through the grieving process.  Losing two babies to ZS, they have been called to help others through their pain and it will be an insightful weekend for sure!  Patience, which was never my strong suit, needs to be practiced since the retreat is not until February!  I look forward to telling you all about it!

If I don't get a chance to write before, Merry Christmas!  Also, if you still have a hand print angel from Lily Grace's memorial service, hang it on your tree and remember the beauty of life and the promise of heaven this season!

My Best Friend

"Love never gives up, never loses faith, is always hopeful, and endures through every circumstance." 

-1 Corinthians 13:7

Four years ago Michael and I stood in front of our family and friends and made a promise to each other.  I didn't know what that promise meant until this year.  No matter what trials come in life, we need to stand by each other.  Michael is my best friend, my supporter, my partner, my everything...God blessed me with such a wonderful husband.  He is strong, faithful, funny and handsome.  We have held hands through the best and worst times in our lives and we never let go.  Michael was a wonderful daddy to our Lily Grace and that made me so happy.  We grew up together and have many pictures to show that!  I made this video of some of our favorites, so enjoy!  (I love you Michael!)

Life Has Been Busy

"We can rejoice, too, when we run into problems and trials, for we know that they are good for us -- they help us learn to endure.  And endurance develops strength of character in us, and character strengthens our confident expectation of salvation." 

-Romans 5:3-4

It's been awhile since I posted, not because I didn't want to or had nothing to say, but rather quite the opposite...life has been busy lately.  A lot of "stuff" has happened since I last wrote.  We've been learning to take these trials and excitements in life as they come, take a deep breath and hold on!

Before Lily was even born, Michael and I had a trip planned to the Outer Banks, we couldn't wait to take our little girl there and show her the beauty that North Carolina has to offer.  After we found out that Lily was going to have a short life we made a decision to go to the beach, no matter what.  Lily Grace hated the heat and cold water, I don't think she would have liked the beach too much!  Michael and I were excited to spend a week relaxing, taking time for ourselves to continue this healing process.  Hurricane Irene decided to make her way up the east coast about the time we were planning to travel south to the Outer Banks, causing our trip to be delayed.  Fortunately, Corolla did not get as much damage as anticipated and we made it to the beach, only losing three days there.  We ended up having beautiful weather and a wonderful week full of friends, family and fun.  The sunrises were gorgeous and seeing the beauty in the sky reminded me of God's presence in our lives, shining his light no matter how dark our present situations are.  It was a much needed vacation!

After returning from the beach feeling refreshed, we received news of my Aunt Karen having to spend some time in the hospital.  While there, she got aspirated pneumonia and her body couldn't fight it any longer.  On September 8th, Aunt Karen went to be with Jesus and I know there was a grand reunion with my Lily Grace.  Aunt Karen was always special to me and I will miss her.  I spoke at her funeral because it was burning in my heart to do that.  Someone gave me a book called "Holding On To Hope" by Nancy Guthrie about grief, loss and trials.  When Karen died, I began wondering "Why?" even more.  In her book, Nancy says instead of asking, "why?" we should ask, "for what purpose?"  I am definitely learning about Gods love and my faith.  God has a plan for me through this pain.  

The same day that Aunt Karen went to be with Jesus, our Godson was born.  Landen Michael James Lewis was born a healthy little boy with lots of hair, and he is adorable!  That day was a bit emotional for me.  In the same hospital, I went from a room where one life ended to another room where one life began.  Not only that, but the maternity floor flooded me with memories, sounds and feelings from our own days there with Lily Grace.  I felt strong and weak all at the same time.  I was so happy for our friends and the start of their beautiful family, we have been praying for a healthy delivery and baby for them.  Through the happiness I may have ripped a few band-aids off a wound that was not yet healed.  There are lots of people I know that are having babies and although I would never have traded my Lily Grace, it's hard not to compare our situations...our time will come!

We recently met with a wonderful doctor from the NICU about options, future pregnancies and our general situation.  Because Zellweger Syndrome is a genetic disorder, Michael and I have a 25 percent chance that every child will have the same disorder as Lily Grace.  Pregnancy or adoption...there are positives and negatives to both.  We realize that there is no easy answer for us anymore, but we have faith that something will work out and we will definitely be parents again.

On top of everything else going on, I started back back to work!  Working at CVS for almost ten years, I have really gotten to know the customers and community.  It has been hard, some people still don't know while others want to acknowledge the loss.  I love to talk about my baby girl, I miss her and want to keep her memory alive.  At the same time, everyday I make someone cry and I feel terrible for that but it comforts me to know the hearts of those customers that care so much.  Going back to work, I also realized that I am called to do something else with my life.  Through Lily Grace, I learned so much about myself and am praying that God leads me in that direction and provides for us along the way.

It was two months on Saturday since Lily Grace went to be with Jesus and this upcoming Friday she would have been five months old.  This past year has been unlike any other and I think we are ready for a break!

It Is All Part of The Process

"Fear not, for I am with you; Be not dismayed, for I am your God.  I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand." -Isaiah 41:10

It is a week today since we celebrated the life of our baby girl.  We spent the three weeks between Lily's passing and the service to prepare for a time of closure.  We wanted the day to be special, full of pictures, pink tutus, bright colors and fun memories.  Most of all, we wanted the day to speak to those who came and lift up their hearts as they mourned with us.  It's amazing to step back and look at how through events like these, God's blessings flow freely.  Michael and I have been flooded with support, prayers, cards, gifts, donations and love...we thank God for that.  We have had so many family members and friends that came forward to help make this celebration exactly what we wanted it to be.

 The church was cover in poster size pictures.

We creatively used ALL of Lily's 55 headbands!

We had displays of fun memories with Lily, and of course her tutus and bathing suit!

The food was fun and delicious...we had a pink and zebra theme!

We also made angel ornaments for everyone out of Lily's actual hand and footprints.

I felt a sense of healing while planning the service for Lily Grace.  Don't get me wrong, it has definitely been a roller coaster of emotions!  I can go from laughing to crying in a matter of seconds, but it is all part of the process.  I have a friend that recently lost a baby to Zellweger Syndrome tell me that it is the quiet time after the planning that hurts the most.  I noticed this week that she was right.  Although we have had a busy week with all of Michael's family being home, there were a few nights when I laid in bed and it hurt.  I am beginning to realize how much I really loved her and miss her.  I would do anything to hold her again.

There are many ways to deal with the loss of a loved one.  I feel as if writing this blog is therapy to me, never in a million years would have I thought of doing this.  I made this public because it is my way of keeping the lesson I learned about my little girl alive, I want to help and inspire others.  I am excited to see the future that God holds for us, we are doing well!

The Start Became The End

As a young couple expecting their first child, we eagerly awaited her arrival.  It seemed like picking names and nursery colors was strenuous and difficult.  Throughout the nine months of my textbook pregnancy, we were building our house as we were building our family.  We had dreams, we had goals, we had BIG plans!

On April 30th, 2011 we gave birth to a 6 pound, 3.7 ounce bundle of joy.  My motherly instinct kicked in when they placed Lily Grace on my chest, I sensed something was wrong.  I asked frantically, "Is she okay, is she okay?" and the nurse assured me that everything was fine.  I knew her body was limp and she had no interest in sucking, but I told myself she would come around.  For at least a few hours in the delivery room, Michael and I saw the happiness she brought to our family and were overjoyed with the thought of our healthy baby girl.  As Lily Grace spent her first few hours in the nursery being monitored, Michael and I took the opportunity to rest after a long, sleepless night of contractions.

A knock on the door woke us up and our pediatrician, Dr. Moscato, entered and from that moment we knew our lives would never be the same.  Dr. Moscato explained to us everything I feared, there was concern about Lily's low muscle tone and inability to suck.  He told us that she may have Down's Syndrome.  Thoughts started racing, "how could this have happened to us, we did nothing wrong, there is no family history..."  With tears in our eyes, we gave Dr. Moscato permission to release our little girl to the NICU for further testing.  Before she went there to stay, Michael and I got a few minutes to love Lily Grace in our arms and enjoy our first time as a family.

Michael and I followed hand in hand as the nurse wheeled Lily Grace in her bassinet down the hall to the NICU.  We dreaded not only what the next hour was going to bring but the the next days, weeks and months were so unknown.  I believe that God works through people and that day we entered the NICU, Claudia and Celia Shermeyer became our lifeline.  Claudia and Celia were lifelong acquaintances, my mom went to school with Claudia and my sister with Celia.  We live a half of a mile from Claudia.  That day, she became our true friend and best caregiver in the world.  We were overwhelmed with emotions as we watched Lily Grace get hooked up to monitors and and IV placed in her arm.  At that point we knew she was a trooper and we needed to get on board.

We took in a lot that day, we were mentally and physically exhausted.  That night, as we lay in the hospital bed, we prayed for answers, guidance and strength.  We searched through the Bible and came across Psalms 8:2, in which the first part caught our attention, "Out of the mouth of babes and nursing infants You have ordained strength."  That Bible verse became our rock to stand on in times of weakness and doubt.  We knew God was with us and we were going to get through this.

We woke up the next morning somewhat refreshed, ready to fight a battle for our little girl.  It was time to let the testing begin.  Throughout the next two weeks, doctors and neurologists had their hands on Lily Grace.  We started to get conflicting opinions on the possibility of Down's, so lots of tests were ordered to come up with an accurate diagnosis.  Bloodwork, EEG's, MRI's, you name it...Lily had it done!  Dr. Barron, a wonderful neurologist from Wellspan, looked at Lily Grace and instantly recognized distinct physical features that pointed to Zellweger Syndrome.  A urinary analysis confirmed the abnormal breakdown of long-chain fatty acids which is a marker for the disorder.

Zellweger Syndrome(ZS) is a rare genetic disorder which affects the brain, liver and kidneys.  Babies with ZS have little to no functioning peroxisomes, which break down toxins in the body.  These babies usually have low tone, an inability to suck or swallow, cannot move, and eventually have seizures.  Unfortunately there is no cure for ZS as well as no treatment.  The prognosis is poor, the babies usually do not survive past six months of age. As Michael and I were told that our baby girl had ZS, the tears poured and our hearts were broken.  There are no words to describe the hurt we felt that day.


Throughout our 18 day stay in the NICU, we learned so much about medicine, life, faith and love.  From neurologist and neonatologists to the nurses and receptionists, we made lots of friends.  Lily was known in the NICU for her sense of style and collection of headbands, she was definitely the best dressed!  We were blessed to get to know so many wonderful people who genuinely cared about us and our baby girl.  With the help of our nurses and doctors, we finally got to bring Lily home.  As if the transition from two to three isn't hard enough, we had to be prepared to change feeding tubes, carry around oxygen bottles and know how to react to seizures.  As we walked out of the NICU as a family, Michael and I vowed to give Lily Grace the best life with the best memories possible.

So we did!  In three short months, Lily Grace experienced more adventures than some people experience in a lifetime.  We took her hiking at Pole Steeple, Tumbling Run, Pinchot and Catoctin.

She was daddy's little girl at the Jeep Show!

She got manicures and pedicures from Mommy!

She swam at Fuller Lake numerous times!

She had photo shoots, with quite an assortment of dresses and tutus!

She even went tubing down the Yellow Breeches!

More important than any of these experiences though was the time she got to be with her family.  Grandparents and great-grandparents, aunts and uncles, she was much loved.  She has brought so much joy to all that have known her.

There is no greater pain than that of losing your child.  It wasn't supposed to be this way.  I began writing this post a week ago so that people could follow Lily Grace on her journey through life.  Unfortunately, the start became the end.  On July 24th, 2011, Lily Grace went to be with Jesus.  I had a vision in my head of what I wanted when that day were to come.  I didn't want to see it happen, I wanted to wake up and it was over.  Good thing God knew better than me because when Lily Grace took her last breath, we were surrounded by family and nurses that loved us as much as Lily.  It was peaceful and beautiful.

We prayed and believed for the past three months for a miraculous healing for Lily Grace.  We are not angry, God didn't let us down, He was with us the entire time.  We were comforted by His presence and love in times where the tears flowed freely and it felt as if we couldn't continue living.  Maybe the miracle can be found in what Lily Grace taught us and others about life.  Be thankful for every day with those you love, hug your children a little tighter, spend time with your family and follow God...He has a plan!

There will be a Celebration of Life Service for Lily Grace on August 13th, 2011 at Salem UCC, 2705 W. Canal Rd., Dover, PA 17315.  Donations in memory of Lily Grace can be given to York Hospital NICU (1001 S. George St., York, PA 17405) or Dr. Bob's Place, pediatric hospice (838 N. Eutaw St., Baltimore, MD 21201).  Feel free to continue following along with me on our journey of healing from the hurt, remembering Lily Grace and living life to the fullest.