I know it's time to update when I start receiving emails asking me how we are doing. By the way, thank you so much for caring! I am sorry for not being more consistant with blogging. I guess I kind of took a break and let Lily's slideshow take main stage for awhile. I have continued to journal though. Below is an entry I wrote when two months had passed.
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Oh, I'm missing Lily so much today. I am so thankful we made the decision to carry her to term. No regrets there. There's just no way to describe the peace we have in choosing the road we chose. And, I'm still amazed we were gifted 5 days to hold and care for her. She was so precious and I'm glad I got to meet her. I know Lily is *living* in Heaven....I'd much rather have her here, but also realize that's just selfishness. It was clear she wasn't created for this world. And, I fully rejoice when I think about what a gift it will be to know her for all of eternity.
How is it that 2 months have passed since the day I held our baby girl in my arms? It just doesn't seem possible that time has moved on so fast. And, yet there are many moments when the whole event seems surreal....as in, "Did such a tragedy really happen in our life? Or, oh, that's right, that event has already happened."
Once the eternal optimist, now it seems moments of happiness are somewhat tainted. A college friend once said of me, "If someone told Jessica the sky was falling, she would say, Isn't it the most beautiful shade of blue?". Ahh, the days before "d-day" (diagnosis day) when smiling came easy.
Now, I find I have to control my thoughts away from doubt and anxiety. If my child has symptoms of a stomach virus, I wonder about long-term devastating illnesses. If the other one falls on the ice and hits his head, I think about concussions and comas. If my husband's flight gets changed and it's been more than 1.5hrs past when he's supposed to call, I turn on the news to see if any planes have gone down.
Have I become a pessimist? A realist? A worrywort? No, I understand it be just a 'stop' on the trainride of grief. "This too shall pass". The anxious thoughts do not alter my ability to participate in every day life, but it is certainly a different thought pattern from how I used to think. Anencephaly and other tragedies were stories from other people's lives. Not that I thought we were impervious to painful circumstances before Lily's diagnosis, but now they seem somehow more real...and possibly more likely.
On the inside, I'm feeling a little like "Debbie Downer" these days...hoping it doesn't show through too much. As "Sleepless in Seattle" said it, "I'm going to continue to get up every morning, breath in and out", and prayerfully go through the motions of life until one day I won't have to remind myself of all the blessings I have to be happy and thankful for...it will just come naturally to me again.
As we continue to go through these stages of grief, would you please continue to pray for us?
Thursday, February 12, 2009
Thursday, January 22, 2009
Photo Slideshow
Finally carved out some time to re-work Lily's Photo Slideshow and make it blog-acceptable. Unfortunately, the video showed at her funeral service was several minutes longer and just too big to upload here. This photo slideshow is also different in that the background music is "Lily's Song"....a very special song written and sung by our endearing Pastor, Phil Moser (I'll include some of the words below).
May Lily's sweet life set your eyes on heaven; where she is living:
"Lily's Song" by Phil Moser
It's Christmas Time, we'll always remember
a baby born one day in December.
As God's love shined, revealed through His giving,
so this we know our Lily is living.
Like the lilies of the field, she's safe on heaven's shore.
Jesus Christ, who paid the price, holds her forevermore.
Before she felt the Lord's embrace,
she was held in her mother's loving arms.
Before she saw her Savior's face,
she was seen through her daddy's tear-filled eyes.
Before she heard the Lord's "well done",
she was loved by her brother's tender smiles.
Before she entered heaven's gates,
her soul touched the earth for just a while.
Monday, January 5, 2009
Loving and Missing Lily Grace
A week before our scheduled c-section date, I sat and imagined what that day might hold. How it would feel to see her, to hold her, to love her, and then to give her back to her creator. I could imagine no joy on that day......but, I was wrong.
Several days before our scheduled c-section date, 10-15 women from our church gathered with me in the quietness of a friend's living room for what I can best describe as a prayer shower. It was an evening filled with fellowship, tasty treats, thoughtful presents, and prayer. The encouragement and wisdom these women imparted helped to calm my anxiety and gave me a greater sense of peace and courage to take the next required step. One of my friends said her hope and prayer was that my fear and sorrow would subside enough for me to fully see the joy and blessings of our precious daughter.
On the way to the hospital, I told Craig I had made the decision to do just as my friend described. I put away as much of the fear and sorrow I could, decided to trust God for His faithfulness, and chose to look for the joy and blessings in what our day might hold.
Reminding myself..."God's grace is sufficient for today"
From the moment I heard (yes, heard her cries) and saw her and held her...I loved her more completely than I could have ever imagined. I looked at our Lily Grace and only saw the beauty in her creation. Her skin was so beautifully pink, silky soft, and she smelled so sweet. Her lips, well, they were a replica of mine I suppose, and we enjoyed putting on a little lip-gloss every now and then. Her fingers were delicately long, and she had nails long enough to warrant a little bit of girly nail polish (though we never did that).
We were amazed by her! With Lily's original diagnosis, we were told that ancephalic babies are unable to see, hear, move (other than small reflexes), or feel pain. It seemed apparent to us that she could do those things. She seemed to follow certain voices. She did not like when her eyes got covered with a hat or blanket prohibiting her from seeing. We loved when she would grasp our fingers with her hands (yes, reflexive), but she had other movements that seemed to be a bit greater than reflexes. As I got to know her more, I could tell when she was sleeping and relaxed vs. bothered by gas or uncomfortable. I didn't want to miss a moment with her. I didn't want to let her out of my arms. We took great pleasure in caring for her. I figured I could sleep later and be sad later...I just wanted to be happy in the moments during the time we were priviledged to have her with us. It felt like a giant blessing, a miracle of sorts to be blessed with time. And, it made my heart soar.
Lily's anomoly affected the top of her head and her left eye. Though severe, it wasn't something that turned us away from her. I guess we accepted her as she was. As long as she seemed content, we were content to care for her, love on her, and keep her with us. It wasn't until her eye started to really swell and the back of her anomoly started to ooze with irratation from rubbing against blankets that I started to feel selfish for wanting her to stay. Letting her go was terribly heartwrenching. It was so painful watching her struggle her last several hours of life that I just kept praying her on to the safer, more comfortable place I knew was waiting for her.
Grieving is a confusing process for me right now. I've been trying to find and put words to describe how I am feeling. There is an amazing amount of peace in knowing we submitted to God's plan. There is an abundant amount of joy in knowing we were blessed with 5 1/2 precious days with our beautiful baby girl. And, yet there is still a deep bit of saddness in missing her presence with us and in thoughts of 'what could have been'. So, these feelings of peace, joy, and saddness intermingle and come and go like the waves of the ocean. Some waves seem to knock me over and take my breath away. Other waves I am able to float on top, where the joy and saddness to seem to balance each other out. And, there are those occasional waves of joy that are as exhilirating as riding a wave to shore. The waves stir and mix these emotions, just as the sand and shells release from the ocean floor and go in and out with the tide.
It's interesting how people grieve differently and at different times. Craig seems to tear up when running his fingers over her hand mold or watching her slideshow of pictures or listening to Justin pray that "Lily had a great Christmas in Heaven". These are the very things that bring joy to my heart. For me, the hurt doesn't come from remembering her. It comes when I realize how much I will miss her being a part of our family and watching her grow, play, learn, etc. Justin continues to fill our hearts with bittersweet moments. He asks about Lily every now and then, continues to spell her name, sings 'Lily's Song' over and over again, waves to her in Heaven, and says he misses her. His grieving seems to be done in very small bits and pieces. It doesn't seem overwhelming or behavior altering. Evan is still delightfully oblivious. He continues to bring laughter to our souls. When he sees pictures of Lily's feet, he says, "stinky feet!". Not at all true, but funny none the less.
I will post a slideshow of Lily's photos soon! Thank you for traveling this journey with us.
Several days before our scheduled c-section date, 10-15 women from our church gathered with me in the quietness of a friend's living room for what I can best describe as a prayer shower. It was an evening filled with fellowship, tasty treats, thoughtful presents, and prayer. The encouragement and wisdom these women imparted helped to calm my anxiety and gave me a greater sense of peace and courage to take the next required step. One of my friends said her hope and prayer was that my fear and sorrow would subside enough for me to fully see the joy and blessings of our precious daughter.
On the way to the hospital, I told Craig I had made the decision to do just as my friend described. I put away as much of the fear and sorrow I could, decided to trust God for His faithfulness, and chose to look for the joy and blessings in what our day might hold.
Reminding myself..."God's grace is sufficient for today"
From the moment I heard (yes, heard her cries) and saw her and held her...I loved her more completely than I could have ever imagined. I looked at our Lily Grace and only saw the beauty in her creation. Her skin was so beautifully pink, silky soft, and she smelled so sweet. Her lips, well, they were a replica of mine I suppose, and we enjoyed putting on a little lip-gloss every now and then. Her fingers were delicately long, and she had nails long enough to warrant a little bit of girly nail polish (though we never did that).
We were amazed by her! With Lily's original diagnosis, we were told that ancephalic babies are unable to see, hear, move (other than small reflexes), or feel pain. It seemed apparent to us that she could do those things. She seemed to follow certain voices. She did not like when her eyes got covered with a hat or blanket prohibiting her from seeing. We loved when she would grasp our fingers with her hands (yes, reflexive), but she had other movements that seemed to be a bit greater than reflexes. As I got to know her more, I could tell when she was sleeping and relaxed vs. bothered by gas or uncomfortable. I didn't want to miss a moment with her. I didn't want to let her out of my arms. We took great pleasure in caring for her. I figured I could sleep later and be sad later...I just wanted to be happy in the moments during the time we were priviledged to have her with us. It felt like a giant blessing, a miracle of sorts to be blessed with time. And, it made my heart soar.
Lily's anomoly affected the top of her head and her left eye. Though severe, it wasn't something that turned us away from her. I guess we accepted her as she was. As long as she seemed content, we were content to care for her, love on her, and keep her with us. It wasn't until her eye started to really swell and the back of her anomoly started to ooze with irratation from rubbing against blankets that I started to feel selfish for wanting her to stay. Letting her go was terribly heartwrenching. It was so painful watching her struggle her last several hours of life that I just kept praying her on to the safer, more comfortable place I knew was waiting for her.
Grieving is a confusing process for me right now. I've been trying to find and put words to describe how I am feeling. There is an amazing amount of peace in knowing we submitted to God's plan. There is an abundant amount of joy in knowing we were blessed with 5 1/2 precious days with our beautiful baby girl. And, yet there is still a deep bit of saddness in missing her presence with us and in thoughts of 'what could have been'. So, these feelings of peace, joy, and saddness intermingle and come and go like the waves of the ocean. Some waves seem to knock me over and take my breath away. Other waves I am able to float on top, where the joy and saddness to seem to balance each other out. And, there are those occasional waves of joy that are as exhilirating as riding a wave to shore. The waves stir and mix these emotions, just as the sand and shells release from the ocean floor and go in and out with the tide.
It's interesting how people grieve differently and at different times. Craig seems to tear up when running his fingers over her hand mold or watching her slideshow of pictures or listening to Justin pray that "Lily had a great Christmas in Heaven". These are the very things that bring joy to my heart. For me, the hurt doesn't come from remembering her. It comes when I realize how much I will miss her being a part of our family and watching her grow, play, learn, etc. Justin continues to fill our hearts with bittersweet moments. He asks about Lily every now and then, continues to spell her name, sings 'Lily's Song' over and over again, waves to her in Heaven, and says he misses her. His grieving seems to be done in very small bits and pieces. It doesn't seem overwhelming or behavior altering. Evan is still delightfully oblivious. He continues to bring laughter to our souls. When he sees pictures of Lily's feet, he says, "stinky feet!". Not at all true, but funny none the less.
I will post a slideshow of Lily's photos soon! Thank you for traveling this journey with us.
Thursday, December 18, 2008
In Memory of our sweet Lily Grace
Lily's memorial services and luncheon will be held on Saturday, Dec 20th at Fellowship Bible Church in Sewell, NJ.
9:30-11:00am Visitation with Family & Friends (open)
11:00-12:00pm Memorial Ceremony (open)
12:00-12:45pm Private Burial
12:30pm Luncheon Reception (open)
In lieu of flowers, we would like to build a playground in memory of Lily at our church. It will be a tangible reminder of the joy Lily brought us, as we gather after church activities with the many families who loved us, supported us, guided us, and wept with us throughout this journey. We will grow lilies there and give our boys a special place to play and remember their sister. Contributions may be made out to Fellowship Bible Church; subject/memo: Lily's Field
Church Address:
590 Jackson Road
Sewell, NJ 08080
Phone: 856-478-9559
http://www.aboutfbc.org/
Directions from Exit 2 on NJ Turnpike:
Take 322 East for approx 3 miles
Turn LEFT onto rt45/N. Main Street (~1 mile)
Turn slight RIGHT onto Breakneck Rd (~1.5 miles)
Turn LEFT onto Jackson Rd and you have reached your destination!
9:30-11:00am Visitation with Family & Friends (open)
11:00-12:00pm Memorial Ceremony (open)
12:00-12:45pm Private Burial
12:30pm Luncheon Reception (open)
In lieu of flowers, we would like to build a playground in memory of Lily at our church. It will be a tangible reminder of the joy Lily brought us, as we gather after church activities with the many families who loved us, supported us, guided us, and wept with us throughout this journey. We will grow lilies there and give our boys a special place to play and remember their sister. Contributions may be made out to Fellowship Bible Church; subject/memo: Lily's Field
Church Address:
590 Jackson Road
Sewell, NJ 08080
Phone: 856-478-9559
http://www.aboutfbc.org/
Directions from Exit 2 on NJ Turnpike:
Take 322 East for approx 3 miles
Turn LEFT onto rt45/N. Main Street (~1 mile)
Turn slight RIGHT onto Breakneck Rd (~1.5 miles)
Turn LEFT onto Jackson Rd and you have reached your destination!
Wednesday, December 17, 2008
Safe In the Arms of God
At 8pm tonight, our amazing Lily Grace traveled upon angel's wings to be safe in the arms of God. We feel so blessed to have had Lily with us for 5 1/2 days. She was a real miracle to everyone who met her...surpassing all of our research and expectations. We treasured every moment with her. It was truly a pleasure to care and love for our Lily.
Details for services to follow soon. Thank you for all of your encouraging words and prayers.
Details for services to follow soon. Thank you for all of your encouraging words and prayers.
Tuesday, December 16, 2008
Lily “Amazing” Grace Frederick
Lily is now 92 hours alive and is expected to amazingly come home with us today. We have been enjoying every minute and are amazed by all her actions and reactions. Lily loves being in Mommy’s arms, listening to our voices, but doesn’t care to be changed. We met with the hospice nurse last night and the best nurses around are teaching us on how to properly care for her.
Please pray for continued comfort, a safe trip home, and SLEEP!
(Sorry for the delay in the update, we’ve had trouble connecting to the Internet)
Please pray for continued comfort, a safe trip home, and SLEEP!
(Sorry for the delay in the update, we’ve had trouble connecting to the Internet)
Saturday, December 13, 2008
Lily Update!
Another proud Daddy update...
Lily is now 31 hours and counting! Though she continues with some seizures and shallow panting, she continues to get fed every 4 hours and her heartbeat and temperature remain good. However, the doctor explained that based on her breathing, we should expect Lily Grace to be in the arms of Jesus at some point today.
Mommy is all unhooked and is starting to walk a bit. Daddy has been able to stay with Mommy while family and friends take care of the outside activities (Justin, Evan, and Lucy - the dog).
Thank you for your endless support, love, and prayers. We have felt God's grace, comfort, and peace throughout the last two days. The tears (especially Daddy's) are beginning to flow, so please continue to lift us up in your prayers.
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