Back-2-School and Summer Catch-up!

Where did the summer go? I cannot believe Sept is here and both of my boys are in school! I really stepped away for the summer....we kept pretty busy (active boys will do that to ya). Anyways, included in this post are links (down below) to navigate you to back-dated posts.

But first, let me share some photos from the first day of school for both of my boys:

Evan started first on Tuesday...his first day in preschool. By the smile on his face, you would never have guessed it would be his first time truly away from me (not counting children's church or MOPs mornings...neither of which I actually leave the building). After watching Justin get to stay and have fun for the last 3 years, I guess he knew what was up. It's like he was saying, "It's my turn!" when he said, "Miss. Ellen's my teacher now!" in his soft, yet teasing voice. His teacher said he smiled the whole day!

Justin started Kindergarten and took the bus for the first time on Wed with six other kindergarten friends in our neighborhood. There were no tears. Barely even a look backwards. I had to remind him to say goodbye to me by LOUDLY calling to him as he was starting to make his way toward the bus...I guess I needed that hug and kiss more than he did! In all honesty, it was terrific to see the kids at the bus stop feed off of each other's excitement....eager to ride the bus, meet their teachers and new classmates.

Well, today was the first day both boys went to school and the first time in 6+ years that I came home to an empty house. I cannot lie....there were tears.

For just a short moment there were tears. The silence of an empty home was like a reminder of what could have been. A reminder that my arms and my time should be filled with the task of caring for a 9-month old little girl. A little girl who would likely be cutting teeth, crawling and making messes, trying new foods, and discovering toys. My life should be complicated with balancing nap times and feeding schedules with the drop-offs and pick-ups for the boys...and, I would count it all joy.

But, thinking about what could have been gets me nowhere good. So, I will think about what will be. Tues and Thurs will become a much-needed "time-for-me" time....well, probably better stated as a much-needed "time-for-the-house" time. Hey, there's two days....let's compromise. One day for me and one day for the house. Okay, that's settled! : )

No, in reality, I am really looking forwarding to having some time to exercise and scrapbook. Those are the two activities I do just for me (although, by the way my boys enjoy flipping through their albums, I think they like the scrapbooking end result too). It gives me time to look through photos, like replaying memories. Journaling becomes the space to record all that is good about a person or an event. It gives me a creative outlet and a moment to thank God for every remembrance this life offers.

So, that's where we are...let me share where we've been!

Atlantis and the "New Normal"

S.S. Lily

Dutch Wonderland

Baptism and God's Faithfulness (working on this post)

D-Day = Bad Day?

"D-Day" is the ABFA (annecephaly support group) term used to describe the yearly anniversary of our baby's diagnosis. Do I expect it to be a difficult day? I'm not sure. I know it's the anniversary of the worst day of my life...

Exactly one year ago, we sat in an ultrasound room and were told the unimaginable. We saw our baby’s deformity with our own eyes, understood words we had never heard before, and our world came crashing down.

Yes, December may be tough too, but I think it's possible today may be worse. December 12th is the day she lived. That’s the day we got to embrace her and we felt only love for her. It’s hard to explain unless you’ve had a similar experience....but, each and every baby truly is a gift from above.

And, Dec 17th was anticipated. We had peace in knowing her purpose had been fulfilled. We were told Lily’s condition was "incompatible with life". So, when she lived for 5 ½ days, we were so very proud of her and thankful for God’s blessing.

But, July 3rd, 2008….easily the worst day of my life. This is the day we went from feeling sweet anticipation to feeling like we were caught up in a storm. All celebration of the pregnancy seemed to stop. This is the day we felt a loss of hopes and dreams and began grieving the anticipated loss of a baby girl we would never know here on earth.

I know the story doesn't end there. I know I loved feeling her grow and move inside of me and we learned to celebrate the pregnancy and all of that. But, July 3rd, 2008 was a tough day. We couldn't see past our tears or broken heart to know God's faithful hand was upon us or that He would show us blessings down this bittersweet road.

Anyways...

Today we will spend some time at Lily's grave fixing it up a bit and then we will go to Longwood Gardens. I think it will be nice to look around at all the gardens-pointing out and learning about all the variations of lilies with our boys. Hopefully, I'll have a chance to share some pictures when we return...

Dutch Wonderland

We went back to Dutch Wonderland this summer. This time we camped with a bunch of our friends from church. Look at our camp site...notice the horses right on the edge of the water (it was an awesome camp site and we had a GREAT time):

As with most events we've planned this year....it rained:

(Paul and Kym with two of their four kiddos - Javen and Ellie)

However, sunshine came the next morning and we had our 'rainbow' moments (these are a few of my favorite pictures from the trip):

(Tara and Kym with Kym's youngest son Javen)

(Justin - loved all the rides)

(Evan - much more timid than his daring brother)

(Chris and Doug)

(Chris and Doug's daughter Gracie with Justin)

Thankful for good times and GREAT friends! : )

The S.S. Lily...

For Father's Day this year, the boys and I bought Craig a motorized toy boat. Introducing the S.S. Lily:

We chose for Lily to be buried at a cemetery on a hill overlooking a small lake very close to our home. As a family, we can go to the playground there, have a picnic, take turns driving the boat, and then hike up to Lily's memorial spot in the cemetery....that's exactly what we did this Father's Day.

This is the memorial stone Craig's parents thoughtfully purchased for Lily:

This is a picture of the boys we took hiking up to the cemetery in March:

Cemeteries have always felt eerie to me. But, there is just something so natural about Lily's cemetery and the way we can work family time into our visits. It's so much more peaceful than I would have ever expected.

Atlantis and "The New Normal"

I thought I would always envision Lily as a newborn baby. The picture I hold closest to my heart is, of course, of her as a newborn. But, that's not what I feel like I am missing. I feel like I should be carrying around a 6-month old on my hip. Lily should be rolling over, scootching (possibly starting to crawl, if she'd be anything like our boys), tasting new foods, sleeping through the night (ahh). So, I guess I'm missing the milestones.

I didn't expect this part of the process. I guess I thought I would "carry Lily as long as God intended" and then go back to living normally. Why didn't I anticipate this part? I guess I tried to focus on each day, remembering that God's grace is sufficient for today. No matter where I go, I will always be the mother of a baby that died. And, that's sad. Remember...I'm the happy, go with the flow, "the sky is falling, but isn't it the most beautiful shade of blue" person. But, there's no escaping this. It's a part of my history and there are times when I just want to flee from it. Only I can't.

When I was pregnant with Lily, I feared the questions and comments I would get from cashiers, moms at the playground, waitresses, etc noticing my pregnant belly. Pregnancy is a time supposed to be filled with great anticipation and joy. How were the strangers supposed to know the sadness surrounding our pregnancy? Could I get around their comments and questions without fully answering? Because once I opened that door, I saw the awkwardness in their faces (what could one say?) and/or the compassionate tears in their understanding eyes. What was I supposed to say without making that person feel awful for asking or saying something in the first place?

In this "new normal", I didn't expect to be answering similarly leading questions. Now I worry about people asking me how many children I have (do I say 2 or 3...it's a little tricky). If someone see me out with our two boys, I often get... "oh, two boys...do you think you'll try for a girl?". (Ummm. Do I go there? Deep breath.) I haven't figured out a way to answer that question and not stun the other person. I don't want that person to feel awkward...I know their motivation is not to hurt me by asking what would now seem like such a rude question.

Another new normal is watching our boys grow through this loss. Evan, who I thought was sweetly oblivious, realized more than I gave him credit for. The other day, I was cleaning out our bottle/sippy cup shelf and placed a bottle on the stairs to go up into storage. Evan picked it up and asked me to fill it with water. I guessed he thought of it as a novelty and just wanted to try drinking from it. Well, after I filled it, I followed him upstairs and watched as he had a conversation with Lily's photo and tried to get her to drink the bottle. Justin, on the other hand, made his first family drawing without Lily. More bittersweet moments and proof that they are moving through the grieving process.

So, feeling like I needed an escape from this "new normal"...I was very much looking forward to a family vacation in the Bahamas in May. (My parents have been going at least once a year for the last 7 years and sometimes they take us along too!) The Atlantis is probably our most favorite vacation destination....it is a great mix of relaxation, fun, and education....for all ages. I was really looking forward to spending time with Craig and the boys and feeling a little closer to God in this beautiful paradise. But, wouldn't you know, it rained. It rained every single day we were there...that's never happened before. We still had a GREAT time (we swam through the rain...we were wet anyway)! But, it sure did mimic how I was feeling....no matter where I go, this rain/sadness follows me.

(Dear Lord, please cause me to remember that without the rain, there would be no rainbows?) Here are some of our rainbow moments from vacation:

I attended a women's tea party at church this spring. I sat at a table with both people I knew and didn't know. I was sharing a little about the playground plans and progress with the people I knew, when I saw the lightbulb go off on the expression of someone I didn't know. And she simply said, "You're Lily's mom".

(Lily's mom) I thought to myself. That is something to be proud of. I'm not just this mom whose lost a child. A picture of sadness. The white elephant in the room. No, I'm Lily's mom. She was a precious gift and at that moment I felt thankful to be the person God chose for her journey.

Rather than worrying about how to answer people's questions, I should be looking for opportunities to share Lily's life. I should be proud of her. I should be honored to tell Lily's story...His story.

Has it really been 2 months?

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?

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.

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.