I've got to type this before I explode or lay in bed any longer, planning this blog out in my head. Ellie's progression went quick, and with each day she lost more and more energy, spunk, appetite and consciousness. In an attempt to get Christmas in while she was still happy, we tried to do Christmas on Friday. All I wanted was for Ellie to have a Christmas morning, opening gifts like kids do, I just wanted to see her smile at one gift. I thought for sure God would give me just 5 minutes of that, however as our Christmas morning came, Ellie was more "out of it" then she had been. We had a hard time getting her to respond to us and ended up having to call upon a nurse. Noah of course was still beyond excited for his Christmas morning, and had a blast opening up all his amazing presents...Santa was very good to that little boy!
I was upset, this wasn't the Christmas morning I had envisioned, even if it was a few days early. I just didn't understand, why. She slept the most of the day, got some new pain meds and seemed to be able to rest better, after she ate some ice cream! Richard and I talked with Noah, because we knew it would be soon that Ellie would be leaving us. With true heart ache he cried, which hurt so bad. He didn't want her to leave. This was a time where I know only the Lord could have provided us the words we needed to explain all of this to him. His questions that followed were truly that of a 5 year old, and I loved them.
Saturday Ellie found herself a little chattier. From her couch she would call for us if we walked away from her. She was hard to understand at times, but we loved every mumbled word that came from her mouth. As family arrived, if she was conscious, she would try to chat with them. She informed us if her feet (excuse me, her socks, because in her eyes you can't call them feet if she has socks on) had come out of her blanket. She made us giggle many times, and just blessed us with her love. She even kissed her daddy, and put her arms out for me to hug her. She drifted in and out and I found myself holding my breath, waiting for her next one. You don't realize you are doing it, until your chest starts burning. After everyone had left she started to seem uncomfortable so I sat and held her. She started to seem to have trouble breathing, we sent Noah to bed and sat with her. Her breathing got worse, she just couldn't get the junk out of her lungs, which I later learned the official term is the "secretions". We started giving her meds to try to calm her down and manage any pain she may be in. As we waited for the nurse her breathing got worse and her chest rattled. We both thought this was it, as her struggled continued, I prayed for him to take her, to keep this pain away, I told her to go....seeing your child struggle is beyond words. As I was praying, her breathing stopped for a minute, as I held my breath, I felt her spirit leave and I thought for sure we were done, but then her labored breaths returned, and I just couldn't understand. Why was she having to endure this too? Hasn't she been through enough? I wasn't mad, just so hurt. Every squeak her chest made, my heart broke. Her nurse arrived, and her breathing seemed to calm down. Throughout the night it got worse, then a little bit better. Sunday morning as she laid on Richard, she didn't seem to be trying as hard to breathe, but her chest was still rattling. We took turns holding her, while getting Noah ready for church. Our plan had been to give him a "normal" day with his friends. As Richard was helping Noah get dressed, I felt her breathing calm down and quiet, within moments, she stopped breathing, with Richards and I's arms wrapped around her. I felt the most amazing peace in that moment. I understood it all at that moment. Ellie's spirit left the night before, when I felt her go. The nurse kept telling me she wasn't in pain, now I believe her, Ellie wasn't in that body we held all night, God was merciful and took her without pain. Her earthly body just wasn't ready till this morning. She left us with the most peaceful smile on her face. I praise God for taking my girl, for healing her and for loving her and us.
Once Noah returned from church, we shared with him what happened, he looked at his sister, and said "I thought you were going to say that" he got sad, hugged Richard and I tight, kissed her, then went to play. He later returned with a princess strong shirt on, which he put on all by himself. I love him.
Death used to be a scary thing to me, it's not so anymore. As her fingers clung to mine, I knew Jesus had her, and one day I would see her again, in her new cancer free body, hopefully with ponytails, because she loved them.
The days that followed we not easy by any means, but we were surrounded by amazing people that made every step of this journey a little bit easier. I'm not sure I could possibly name everyone, but know how supported and loved we felt by our family, friends, and strangers. Things like picking flowers felt silly, yet important. Picking Ellie's clothes was extremely easy, she had her favorites, picking my clothes, a whole other story. Again I battled with important, yet insignificant, they were just clothes, but I wanted to represent my girl. Several times in the middle of the store I lost it, but the Lord has blessed me with a wonderful husband who reminds me I don't need to worry about the people around me. I didn't want it over done, I didn't want anyone to lose sight of what was truly important here. Yes, we lost Ellie here on earth, but the Lord did amazing things through her and us. He didn't let her suffer long and then took her to be with him, giving her, her own personal angel escort home.
We spent a lot of time talking with Noah about what would be happening on the days ahead, explaining funerals, family nights, caskets, cemeteries, but most importantly heaven. He loves to read about heaven. He has such an amazing understanding, that Ellie has been in heaven since Sunday, she is no longer sick, she doesn't have cancer anymore and she is happy. What we can see is the body that was sick and she doesn't need anymore, because God will give her a new one.
Ellie's reach continued all over facebook as loads of pictures rolled in from all over the world of lights being lit for Ellie, and honestly I haven't looked at most of them until today, and I'm amazed. As we approached our church Thursday night for family night, I felt like I couldn't breathe, I knew it wasn't going to be easy, I had no idea who would be there, but as we turned the corner, I saw this...
This was an amazing labor of love. I know it wasn't warm outside, but these wonderful Elves were there making sure those lights stayed lit. I know one little girl who loved Christmas lights, would have adored these. As I prepared myself to bring Noah in to see Ellie, I asked God to just give us strength and peace, and I was comforted. Noah was okay, but sad, and then quickly went off to his iPad and headphones (I know what this little boys purpose is in life, to give his parents visible strength). I looked in amazement at the line of people there to love us. Faces we hadn't seen for years, traveled to good old Orange County to be there for us. Thank you. I know there were a lot of tears, and I was grateful for the peace that God gave me, and I hoped that with each hug I gave, I was passing that peace on to others who were struggling. After Noah had written on everyone with invisible ink and SG had been held by pretty much everyone, we went home to pig out and sleep. I can't say I slept that much, it was like the night before Christmas, which I'm sure is an odd way to describe it. I was excited for the day to celebrate my girl.
Richard and I went over the church early, just to see her face one more time, she still looked beautiful. We kissed her, prayed over her, and thanked the Lord for her. It was a precious, quiet moment. There was music playing, and the song that came on, I didn't know, but it talked about God have your entire life planned before he even formed you, it made me smile. She was chosen, it was planned, she fulfilled her purpose.
We went home to prepare the troops...boy is it hard work trying to get dressed in black clothes, when you have a white dog who sheds :). Once Noah was dressed we handed him is iPad and said "don't move!" While I got ready I remembered my sweet girl who would come in my bathroom and watch me put make up on or do my hair. I would always joke with her about if she needed me to curl her hair, to which she would laugh "I don't have hair Mommy!". She would come look in my mirror to see herself and ask "do I look pretty?" or tell me she looked beautiful! I felt like I was putting my super hero cape on as I put my sweater on. I felt God pumping me with strength. Sparkly headband and pink scarf on and we headed out. I adored the pink I saw on scarves, headbands, belts, mens shirts and ties. Beautiful flowers surrounded her, and I was glad Richard made me take the time to go pick out flowers. As the church got packed and Noah got antsy and of course SG woke up, service began with prayer. I could hear her "shhh Mr. Preacher is praying". We had picked out her favorite songs from church and everyone sang, I loved it! Sweet Noah would crawl in my lap and hug me when he felt sad, and then whisper something about Ellie that makes him laugh, which in turn made me laugh.
My most proud moment was watching my husband so bravely get up and speak. If you know my husband, you know this is not typically his thing, but he felt strongly about doing this. The words I heard come from his mouth were beautiful, if you were there, I know you were just as moved. He spoke of our purpose here. That God has started something in all of our lives, and he will carry it out unto completion. Philippians 1:6 "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." God started something in Ellie and completed it, and it only took her 2 years to do so. "Don't let God's work stop here. Don't let the light that shined through Ellie grow dim. If Ellie's work has touched you as you say it has, then pick up your cross and let the light keep shining." I can't say the rest of what he said as well as he did, but I just kept thinking how proud of him I am. He spoke of his cousin's funeral several years ago, and its funny because I had been thinking about the same thing, but we never talked about it, he hadn't shared any of what he wanted to say with me, until that moment. He/we were much different then. Richard had such a difficult time with her death, while completely different circumstances, he never saw the hope in it. I believe the man he is today, is a true testimony to just what God can do when you give your life to Him. As Ellie's pink flower wearing pallbearers escorted her out, I saw the faces of so many. People we didn't realize where there, that had traveled many miles, walked by our car. So many friends I wanted to squeeze so tight, but blowing kisses had to do for now. Thank you all for being there.
I will never again complain about being stopped for a funeral procession. I felt honored that all that traffic (okay so its orange county, there's not a ton of traffic) stopped for us. I looked back at the line of cars and felt so encouraged, sharing Ellie with so many was worth it all. All these people had been touched by her sweet smile, her dimple, and our love of Jesus. Once at the cemetery, with my Daddy by my side, he approved of her resting spot we had chosen. That meant a lot to me, as we looked out at the mountains, it was beautiful. I didn't cry until we sang "Victory in Jesus". The sweetness of those voices, without any music accompanying them, in the brisk wind, is probably a sound I will never forget. I think I squeezed Noah and my Mom's hands till they turned blue, but they were my strength in that moment. I fully expected Noah to yell I was hurting him, but he never did (thank goodness).
We returned to church and were treated to an amazing meal...more thanks goes out to our wonderful church family. There is just so much thanks to give. Everywhere we turn, someone is helping us, from the funeral home men, who were so sweet and I know took care of my girl as if she was there own, to friends who provided the programs for Ellie's service. Thanks to those who sent flowers or hung a wreath on my driveway. Thanks to those who cooked. Thanks to those who helped serve food or get someone a drink. Thanks to those who hugged and kissed me. Thanks to those who played with Noah or held SG. Thanks to those who gave little presents to make Noah smile, or gave him a small wave. While his shyness prevented him from going to say hi, rest assured, he saw you and pointed you out to me. Thanks to those who hung out at our house for hours just keeping us occupied. Thanks to those who have been on this same path before me and shared your heart and knowledge with me.
Our house is quiet now, sometimes too quiet. It feels less stressful and less anxious. It also feels like something is missing. I catch myself, counting children, or thinking we've forgotten something or someone. I'm sure that feeling will pass with time. I know I'm so grateful for Noah and SG, they keep us laughing and smiling. I'm sure Ellie's passing has caused lots of families to have conversations with their children, they probably didn't expect to have early on. I pray that when you do share with your children, you share just how much God loves us, that he has prepared for us a place. Explain to them the joy in there's no more illness, no more sadness, no more medicines (Richard and I celebrated as we poured all Ellie's meds down the drain!) no more hurting.
"Before I formed you in the womb, I knew you, before you were born I set you apart for a special work" Jer 1:5
In Ellie's 1061 days on earth, He started a work in her and completed it. We as a family were chosen to care for her in those 1061 days, we were set apart for a special job. As Richard said, God is not done with us yet, so we must stay, but we also must continue to share the wonderful things the Lord did through Ellie!
Prayers, Praise and Pink
Please say a prayer for some other Pineoblastoma families who lost their children as well, I'm pretty sure Ellie was one of 3 children all with the same disease who went home to Jesus just this week.