Tuesday, March 30, 2010
Cora's first birthday was great. She is such a little doll. She is talking more. She says, "dada", "mama", "nana" (banana), and copies everything she sees and hears. Pictures and hopefully some video of the happy day are on the way. Just wanted to stop in and say hello.
Thursday, March 25, 2010
Am I blue
Yes I'm blue
It started the day I lost you
Nobody ever missed somebody like I do
Am I blue
Am I blue
Describes my mood precisely. Spring has sprung, but my heart is still caught up in the throws of winter. I hope Emma is jumping through fields of flowers, doing cart wells and catching butterflies. That is the image I want burned in my head and on my heart. But what I really want is for her to be here with us, getting ready to celebrate her baby sister's first birthday, getting excited about egg hunts next week, and trying on pretty clothes to match Carleigh, Luke and Cora for Easter Sunday. I hate the heavy feeling in my heart and the tears that burn my eyes every day. I hate visiting the cemetery and putting cute things on her grave that remind me of her. I don't want her to be there!
I will think of her this weekend as I venture to our church's annual ladies retreat. We'll travel through roads lined with the state's flower, the bluebonnet. Indian paintbrushes and all sorts of other wildflowers will cover the hills as well. It's usually a sight to behold! It should be a beautiful weekend. I hope the dark cloud that seems to surround me is lifted for a while.
Wednesday, March 24, 2010
I tried to post a video, but YouTube wouldn't work for me. It was adorable watching her making the horse go and squealing with delight!
Tuesday, March 23, 2010
So, we're getting ready to leave the restaurant when I see a former student. I've seen her a time or two or three or more over the past few years, as she worked at one of my favorite stores, Old Navy. She has seen me with my kiddos...all of them. The past year or so though, she hasn't seen me with Emma. Tonight I didn't have any of our little dolls with us. So after a quick hug, hello, and how are you, she is walking away and gives me a wave and, "three kids, right?" (It was always funny for her to see me with my crew since I didn't have any kids when I taught.) I struggled to shake my head yes, but wanted to tell her, "come back because I need to share with you the story of my beautiful little girl, Emma. She came and left all too quickly, and I miss her terribly and want to you to know her too." I didn't have time to say all of that, so a nod was all she got. I got a pain in my heart in return, no fault of my student, but pain nonetheless. Have I mentioned I hate Batten Disease?
I love Emma.
Thursday, March 18, 2010
Well, we didn't drown today! A terrible cold front blew through during Emma's Bayou Bash, but it was still wonderful! There was a good group of great people there, including about 75 major trooper bikers! The BBQ was YUM-O, and the bidders were awesome! I look forward to hearing how much was raised for Emma's Hugs and Batten Disease Research. Stay tuned for more on another successful year!
You asked, we delivered! For you, our faithful blog readers, there is a special auction until Sunday. So, even if you live on the other side of the world, you can still participate in the 2nd Annual Emma's Bayou Bash! Check out the items listed below, then click on the link to ebay, place your bid, and hope you win. It's hard to do these items justice with my limited photography skills, but they are all great! The handmade baby items are gorgeous! Happy bidding!
Click here to go to ebay and bid on this beautiful handmade vintage baby girl sweater set.
Click here to bid on the this limited edition Larry Dyke print with distressed frame, Psalm 91:1.
Click here to bid on these adorable tutus and dance bag. Your little dancin' doll is going to love dressing up in these!
For those of you planning on coming out to the Bash on Saturday, here's a little something to temp your bidding finger! You're going to love Uncle Gene's Fire Pit. LOVE. THIS! Emma spent many nights getting warm beside one of these pits! Great for cooking your favorite steak, roasting the perfect marshmallow, or just hanging out by the fire! You're not gonna want to miss bidding on this beauty! We will also have ours out there with a big fire to keep you warm!!!
First, the auction items are lined out and Christy will post those later, so check back!
Now, as we head into the final stretch before the 2nd Annual Emma's Bayou Bash, let's take a moment to reflect on the purpose. You will remember last year that the event was started by friends who wanted to help with Emma's expenses. And WOW, how they did! The one day event raised $80,000, with 10% going to Batten Disease Research and 10% to Emma's Hugs. Nearly 2,000 plates of barbeque were served and the event left a huge impression on all involved.
This years Bash will be a little different since Emma has moved on. A lot different, actually. Her name will be on hundreds of pieces of merchandise and thousands of pieces of paper. Her picture will be on shirts and banners. We will be flush with memories of Emma. Our parade queen will be absent. Emma is missed.
For all the Bash workers, thank you for physically being Emma's legacy. Your efforts are appreciated and will benefit many. All of this year's proceeds will go to Emma's Hugs and Batten Disease Research. We will be providing many thousands of days parking to people in the Texas Medical Center this year. I hope everyone understands that the real value in these parking passes in not the parking itself. The value happens somewhere down the road, out of our sight. It happens when these people pass their appreciation to someone else, over and over again...paying it forward...changing flat tires...donations to other charities...anonymous gifts to the needy at Christmas...serving hot meals after a storm...mowing an elderly neighbors yard...all for the price of a $12 parking pass. This is already happening a thousand times over. The legacy of a little girl's hug is impacting the world she left behind. This is what we want everyone to remember as Emma's Bayou Bash comes and goes on Saturday.
So, to you, supporters of Emma's Hugs: "Good job, and thank you for letting Emma's Hugs pass along your generosity".
Wednesday, March 17, 2010
After receiving requests from several of you, today, we are selecting about 6 items for Emma's online support base to have an opportunity to bid on. Check back here Thursday AM for links to Ebay where the items will be posted. The Ebay posts will be open until mid-day Saturday.
This is going to be a blast and we are happy to be able to involve everyone!!!
Tuesday, March 16, 2010
I grieve now that she is gone because she is gone, but also because I never got to see what she should have been. I know she is loving life now. I thought about her in church this morning. I felt a connection to her knowing we were both singing praises to our Father in Heaven...she was just doing it face to face. I struggle every day. Some days I am saddened that there just aren't enough memories to carry me through this lifetime without her. I don't want the sad to overshadow the happy, but I'm afraid it does a lot of the time.
"He gives beauty for ashes, strength for fear, gladness for mourning, peace for despair." Isaiah 61:3
Monday, March 15, 2010
This afternoon we're going to meet some friends at the Kemah Boardwalk and spend the evening with them. Love. that. place!
I'm praying the weather will be just as beautiful for the 2nd Annual Emma's Bayou Bash! So many lovely people have given so much time and effort, so many hours, so much sweat and tears, to make this year the best. We will celebrate the beautiful life of our little angel, Emma, and hopefully raise a whole lotta money for Emma's Hugs and Batten Disease Support and Research Association. Hope you'll join us. If you can't come to Emma's Bayou Bash and you want to donate anyway, please go to http://www.emmashugs.com/. You'll see the donate button at the top of the website.
Friday, March 12, 2010
There are tons of other great auction items. There is literally something for everyone, from babies to hunters and fisherman. Come on out and see for yourself!
If you still need a BBQ ticket, let me know. We have some to sell. Tickets are $10 each. If you need any more information about the benefit or motorcylce ride, please contact Bill or Susan Baker at email@example.com.
Wednesday, March 10, 2010
So, we’ve all been dealing with the loss of Emma in our own way and for me personally, it’s been a roller coaster. Some days I am angry, other days I just ask questions, sometimes I can imagine the awesomeness of heaven and be jealous and other days I just hurt…but what I really wish I were…is 3!
J.R. and I have had the very hard task of explaining everything to Addison – and for a long, long time now! Addison began asking us questions long ago and we’d chosen to only share that “Emma is sick sometimes and doesn’t feel so good.” Originally, we’d pray with Addison at bedtime and prompt prayers for Emma, but as time went on, Addison prayed for Emma on her own, and at any time of day…I can literally attest to HUNDREDS of prayers that I’ve heard Addison pray on her own, “Dear God, please touch Emma and make her stop hurting. In Jesus name I pray, Amen.”
The Monday that Emma left this world, J.R. and I could hardly even talk to each other…we just didn’t know how to “be.” We easily knew that we were too emotional to attempt to explain everything to Addison…Emma was her friend! So, we figured we’d “put it off” until WE were ready. That Wednesday evening, we’re driving down the road to go eat dinner and we hear Addison in the back seat praying out loud for Emma…of course, we just look at each other and melt. We knew we needed to talk to her whether we were ready or not.
We took the next couple of days to talk specifically to Addison about as many details of heaven as possible. At the end of those couple of days, we’d drawn our own picture with markers that included pearly gates, angels, music notes, happy faces, rivers and sparkly streets…but the best part was the mansion! Because we told Addison that everything in heaven is happy and perfect and a party all the time and God gives you your very own mansion, at Addison’s request, these were the things we drew for Addison’s mansion…
“I need a fence yard, and draw Max too…he needs a big bone and a food bowl. I need water for my 4 fish to live in and write their names. And, fireworks everywhere! It’s a party so I need balloons and a cake too…put it in my back yard next to my swing set and my slide. Do you and daddy live in my mansion? Cause I need room for my play tent I want in my room! Where is Disney? It needs to be close to my mansion too…”
Obviously, we’d figured out that Addison had the best picture painted in her mind of how wonderful heaven is…we knew that it was time to talk to her. Preparing ourselves for the worse reaction possible, we sat down with Addison and told her that it was, “Emma’s turn to go see Jesus.” She immediately dropped her head…J.R. and I are nervous about her words surely to follow. When she looks up at us, she said, “So, Emma is in heaven now?” After we told her, “Yes,” she got a HUGE grin on her face and said, “WELL, LET’S ALL CHEER FOR EMMA!!!!!!!!!” With her little hands over her head clapping while screaming, “WOO HOO,” she looks at J.R. and I (like we are crazy) and demands us to join her! I bet we “Woo Hoo-ed” (and I mean LOUD celebration) more than a dozen times in a row!!!
Since then, Addison has been making plans for when she gets to heaven too and gets to see Emma again – on the agenda so far are: tea parties, tag, dress up, hide and seek, sleepovers and playing at the park. Every now and then we’ll get asked, “Do you think Emma took Max for a walk today?” And, the other night she went into her room to pick out the pjs that she wants to wear when she gets there.
Oh to be 3! When she found out, she celebrated! She never asked, “why” and her perception of time is as if she’s going to get to see Emma tomorrow!
Maybe someday I’ll be as strong as a 3 year old!!!
Saturday, March 6, 2010
Inside room G158 of the NE wing of the Cancer Center, the young Russian couple stared at a television set for the 5th straight hour, wondering what they were talking about. They recognized "Hannah Montana", "Coca-Cola" and "Obama", but that was about it. Over the past month they had traveled seven thousand miles to seek out world class cancer treatment for the family's wife and mother. She was 28 and stricken with bone cancer. After selling everything they owned and arranging for family members in another town to care for their 2 children, they headed to Houston. His employer said they would hold his job, but he wasn't optimistic.
Months of chemotherapy in their coastal home town of Kardla had only slightly slowed the disease. She fortunately fit the profile that an international pharmaceutical company was needing for a clinical trial, so her treatments in Houston were covered. A translator made rounds with her doctors, their only connection to "home". Their spirits grew weak after so many rides on the emotional roller-coaster that only cancer patients can relate to. He had started walking the four miles to the hospital each day to save money on parking, but didn't have the heart to tell her so. A few days last week he even slept in his car, in a mall parking lot, to save what little money they had left.
"I can't think of anyone else needing parking", the nurse told the folks from Emma's Hugs, a new charity that was helping people at the Cancer Center. They explained they had one more Super Pass left, and wanted to leave it with someone. "Maybe try another floor of the hospital", she suggested. So, the couple headed for the elevator. Suddenly, a crash and clatter was heard from the nurses station. A patients chart had fallen off the wall hook and spilled on to the floor. The nurse collected the papers and put them back into the binder, the binder labeled "G158". Then she remembered..."hey wait, I know who could use that parking pass..."
"You are having too much fun", the gentleman told the young girl, laughing until tears came to her eyes. "I know, I really should stop, but it is always so much fun!" she exclaimed. "I know it is, Emma, and you are right, they were certainly the people in most need for a parking pass today. Good job".
Wednesday, March 3, 2010
So, we understand that we live in a sinful world. We verbalize that there was a time sin didn't exist on Earth, but what did it look like?
I am afraid that sometime we drastically underestimate the difference between a sinless and sinful world. It is easy to think of a sinless world as being close to our current world, just minus war, theft, disease and lies and everyone smiles. Pretty simple, but oh so understated.
As the free-thinking beings that God willfully made us to be, we sometimes question and doubt those things we can't see. We didn't see sin enter the world, so sometimes we wonder if it really happened or did it just make a good story. Well, we have recently experienced an event that draws incredible parallels to sin entering the world; it forever changed the landscape, no one saw it happen, and yet no one doubts it happened. Please join me for a story, if you will...
On September 11, 2008, Crystal Beach, Texas stood as a thriving beach front town comprised of row after row of brightly colored beach houses. The summer had been awesome. July 4th saw over 5 miles of fireworks fill the sky for hours. Our beach house had new trim boards and a fresh coat of paint. The neighbors had just added a huge deck and planted beautiful tropical flower beds nearly the length of the property line. Fresh shrimp were bought weekly right off the docked boats, soon to be stuffed into jalapeno peppers and wrapped in bacon and grilled. Every sun rise, bar none, had been met with a cup of coffee and abundant fish in the surf. Every sun set was given best wishes by a smoky fire and smores.
On Friday, September 12, 2008 the tide rolled in strong and past the dunes without yielding. The land disappeared as the day went on and by nightfall Crystal Beach resembled Venice, Italy, with blocks of homes standing in water, but standing nonetheless. But as day turned to night, and without a set of human eyes to witness the full event, Hurricane Ike headed for shore with 145 mph winds and a 15 foot storm surge. To be clear, think of the Mississippi River suddenly becoming 50 miles wide and flowing across your town for 12 hours, only to reverse directions and flowing out for another 12 hours. While we can only imagine what it looked like in the dead of night, since no one saw or was able to record this colossal event, we did soon see what was left after the storm.
The town as it had existed before ceased to exist. There was no resemblance between the two. The physical structures were washed a mile across the peninsula, 5 miles across East Bay and eventually piled into debris fields 6 miles inland north of the bay, 12 miles from their slabs!
Welcome to Earth, post-sin...Welcome home!
While we live in a wonderful place with wonderful people, the photos above help to demonstrate how far we are from a sin-free world and God's Perfect Plan. As sin entered the world, it did not gently spread as white-lies and occasional impure thoughts. No, sin swept across the landscape of human hearts as a 15 foot high, black-as-ink wave of destruction. Its roar was deafening and it trampled every soul.
Riding high on the crest of the wave of sin was Batten Disease and others like it.
I celebrate tonight that Emma skips through a town of brightly colored beach houses on her way to play on the beach...running through clean, foamy water...riding on Jesus' shoulders as they romp in the surf...and chasing butterflies on the beach...like we used to do...
Well, to be honest, it is getting harder. No kidding. Call me dumb (really, feel free), but I bought into the whole idea that we had already grieved Emma because we lost her each day we held her. When she was first diagnosed I spent 10 days in a very dark world; too dark to put words to. Over the next two years I mourned her daily as she lost milestones and steadily drifted away from the girl she was. I really thought her crossing the finish line was a finish line, of sorts, for us as well. I'm dumb.
Tuesday, March 2, 2010
We have BBQ tickets if you want to purchase one. Don't wait too long. They are going fast!
Last year some really great people, I mean really great people, put together a benefit for Emma. They wanted to do something to help. The money raised last year at the 1st ever Emma's Bayou Bash paid for all of Emma's needs during her last year with us. We can never say thank you enough to Bill and Susan Baker for following through with the vision God gave them to help Emma. All the people who jumped on board to help them make their vision a reality were totally amazing. The whole thing still makes my head spin.
Well, the same really great people are at it again. Last year the money raised from Emma's Bayou Bash was for Emma and her needs with a portion of the proceeds benefitting Emma's Hugs, Inc. and Batten Disease Support and Research Association (BDSRA). This year all of the money will benefit these two organizations.
Please come out and help celebrate Emma's life and support these causes.
The benefit is Saturday, March 20 from 10 a.m. until 6 p.m. at Eastside Honda in Baytown, Texas. There will be a live and silent auction, BBQ, fun for the kids, and great music! It will be a good time for all. We can't wait to see you there! For more information or to volunteer, contact Bill or Susan Baker at firstname.lastname@example.org.