It’s been one week since Layla went to heaven. To say I miss her would be an understatement. She consumes my every thought. I think about her every minute of the day. Even when I’m happy, I’m still sad because she’s not there to join in the laughter.

We have 2 other small children, so life still goes on. I can’t lay in bed and cry all day. I have plenty of moments when I cry driving down the road, doing dishes, watching tv or playing with my other girls. There are plenty of times they cry with me. And that’s okay. I’d rather we all cry together instead of me locked in the bedroom and them thinking that there’s something wrong with showing emotion.

I’m still finding her clothes mixed in with the laundry. Her favorite toys scattered around the house. Her car seat sitting in the garage that is a daily reminder that she won’t ever sit in it again. The hardest thing for me has been walking by her room every day. I have to pass her room to get to Jenna and Claire’s. We keep the door shut but occasionally I go in there and sit on the floor and just cry. Evie comes in with me and lays next to her bed. Eventually her room will be made into a “quiet room”. I’ll move all the girls books, puzzles and Layla’s favorite toys in there. I’ll keep the theme and colors the same. It will be a comforting place to go to read, reflect, pray and talk about Layla.

Layla’s Celebration Of Life on Saturday couldn’t have been more perfect. It was a BEAUTIFUL clear day. Breezy and warm, but not hot. The flowers were displayed on the stage to resemble a garden. They were perfect and vibrant – exactly what Layla would have chosen. Pictures and a few of Layla’s favorite things were mixed in with the arrangements. The music was equally as amazing. I hope to have the audio in the next few days and will post it. I could tell you how wonderful it was, but you’d have to hear it to really understand. I will hopefully have some pictures soon as well. At the end of the celebration, we did a balloon release. 1000 pink and purple balloons were sent up to Layla as we listened to Israel Kamakawiwo’ole’s version of “Somewhere Over The Rainbow”. I’m sure she was squealing with excitement

We had tons of flower arrangements. I took home about 10 and the rest we piled into 4 trucks and took down to Texas Children’s Hospital. We handed them out on the cancer floor and left some for Layla’s nurses in the Cancer Center. It was so surreal driving there, voluntarily, without Layla. I’ll do it again though. I’d like to go with something different each time – art supplies, stuffed animals, books, balloons….anything that will put a smile on the faces of the kids. Even though Layla’s cancer journey is over, there are new children starting this journey everyday.

I’m amazed at the prayers and support that is still being offered to us. I assure you, we are feeling it and are so appreciative.

A foundation in Layla’s name is in the early planning stages. Once we’re up and running, I have some BIG ideas. It’s my responsibility to live out Layla’s legacy. It will be tough because I have big shoes to fill, but I have faith that Neuroblastoma will become as widely known as other childhood cancers. I also have faith that funding for research will follow. If I can prevent even one family from feeling the pain that we’ve felt, then I know I’ve succeeded and Layla would be proud.

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I’d like to say thank you for the overwhelming support we’ve received the past few days. We felt loved before, but WOW, I’m completely speechless. In the midst of feeling like my heart is being ripped out, I’m also so thankful for the love for Layla that is being shown to us.

Layla has touched so many in her short time on earth. Please join us at Layla’s Celebration of Life, Saturday March 13th at 10:30am at Bear Creek Baptist Church. 5901 North Fry Road, Katy, TX 77449-1807. We will honor her through pictures, music and a balloon release. Childcare will be provided.

A huge thank you to everyone who is inquiring about donating flowers for the service. Layla LOVED flowers!! Here is our florist information….

Autumn Leaves Florist
15210-D Spring Cypress
Cypress, Texas  77429
281-373-3332

Thank you for your continued love and prayers.

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There isn’t much change with Layla. She is getting weaker by the day. She’s refusing ice chips, juice chips, small bites of jello…basically she’s not opening her mouth for anything. She can no longer sit up on her own and can hardly lift her head when laying on my shoulder. This is much slower and much more painful than we could have ever imagined.

The past year has been one obstacle after another. We’ve had doctors and others that have walked this road, try to help us by telling us what to expect each step of the way. While it’s been helpful, until you’re put right in the thick of it you have no idea how to react. The past 3 weeks have been pure hell. Watching Layla go through this suffering has been pure hell. Being away from our other 2 kids has been pure hell. The only think keeping me sane is faith. When I’m holding her and just want to cry uncontrollably, the only thing that holds me together is faith. That’s all I have left to cling to.

She’s still very aware of what we say, and who is in the room with her, so she can’t hear me crying all day. I have to be strong for her. I have to be the one to tell her that it’s going to be ok. That I’m so incredibly proud of her strength and grace. That I will take her short amazing little life and tell the story over and over again. That she WILL continue to do God’s work and she WILL make a difference in the lives of children with cancer.

My relationship with God has grown so much the past few months. That is all Layla’s doing. I’m so grateful that I was blessed with this angel on earth. She has taught me patience, faith, strength, grace and love. She has continued to amaze me over and over again.

Today, I’m going to ask for prayers for our other 2 daughters. Jenna is 9 and Claire is 3. They have been at my mother’s house for 2 weeks now. We didn’t want them to see Layla like this. We want them to remember her as a happy, bubbly 2 year old. Claire is too little to really understand what’s going on. She thinks it’s pretty neat that she’s getting to stay with grandma for so long and sleep in a pink princess bed. Over time, it will become more difficult for her. She’s used to Layla being gone for weeks at a time, but it will be a shock when she finally realizes that Layla isn’t coming back. Jenna is really having a very tough time. She’s been working with a child life specialist from Texas Children’s Hospital, learning ways to express her anger and sadness. She’s also writing in a journal. She’s being given tons of attention from family members. She’s still deeply hurt. Please pray for comfort and peace for her. I can’t wrap my head around what’s going on, I can’t even begin to imagine how this must feel for a 9 year old.

I want to say thank you to everyone who has taken the time to send emails, comments, tweets, messages, cards and sweet gifts. I can’t even begin to tell you how much it means to us. It’s very comforting to know how many people love Layla and are praying for her.

2 Corninthians 4:7-12, 16-18
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

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Dad again here; a few weeks ago we learned that bad news had gotten worse. The doctors initially thought that we maybe had a couple of months left with Layla, but instead it was going to be more like two weeks.

Still, we kept praying expecting a miracle. Never give up hope, that’s our motto. God doesn’t bring the bad, he brings the good. But we knew in the back of our minds that it might be part of God’s plan for her to return home to Him. It’s not too much of a stretch to believe that God’s work with Layla here on earth is nearly complete. She’s brought people closer to their families, closer to God, Shanna and I closer to each other. Lots of people have been touched by her. Lots and lots of people. Shanna and I still look at the number of Twitter followers she has and can’t grasp it. It’s unreal.

When we took Layla home to pass, the hospice doctors and Dr. R told us what to expect. It’s not easy to sit at home and watch your child die. Our only wish was that if Layla was going to pass, that it be in peace. It hasn’t exactly been like that. Layla’s pain has been difficult to manage. She is allergic to morphine and all of its cousins (i.e. everything that works) so we have to give her small doses of morphine anti-dote alongside her morphine otherwise she tries to tear her own skin off like a bad trip. Her intestines are stopped up and nothing seems to be working. They are probably occluded by tumors… that’s what happened the first time around when she was diagnosed. So because her bowels don’t move, all of the bile that accumulates in your stomach over the course of a day has to go somewhere. In her case it’s vomited out several times a day. Even worse is when your body is shutting down it doesn’t get hungry. You don’t eat. You don’t want to eat. Dr. R said that giving her iv fluids and nutrients will actually do more harm than good. Her body doesn’t need all the extra stuff and doesn’t know what to do with it. It can shorten her life opposed to prolonging it. It’s horrific, Layla is unrecognizable. She can’t even speak, she squeaks in this raspy pitiful voice that makes you want to break down and cry. It’s the most difficult thing we’ve had to cope with through this whole fight. Layla is literally dying before our eyes but not like how it works in the movies. I don’t want her to go but if God is going to take her we just want her to go peacefully, not like this. Lord, not like this.

I guess you are probably wondering how we manage to pick ourselves off the floor long enough to sit down and blog. It doesn’t exactly work like that. We cry…. a lot. We’re not made of steel, we’re not half as strong as many have made us out to be. We simply hope and believe that God has the power to change anything, even this. We cry and pray, and yell and pray, and shake our fist at God, it’s ok though… he can take it. We initially started using twitter just to keep us sane. Most of our friends have (or have had) small children and when something happens to a small child everyone feels it. When we first found out something was wrong with Layla our phones were blowing up with text messages and questions from friends and quite frankly we just didn’t have the nerves left to respond to everyone. As we began to discover exactly how deep the rabbit hole went, we knew Layla was going to need prayer…. lots and lots of prayer. So twitter, and eventually this blog, became a way to stay constantly connected with the prayer warriors out there beating down the gates of heaven for precious little Layla. Over time it has become part therapy too. Ever been so troubled by something that you wanted to climb on your rooftop and scream at the top of your lungs? Welcome to laylagrace.org.

Shanna and I have had Layla in our arms or lying by our side now for the past 10 months straight, cherishing every breath. We are so grateful for the support of the many people who have shared this journey with is. God bless all of you.

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