- Jill Heilman
Disclaimer: I know I haven’t blogged the past couple years – there is a reason for that. 1. I am a total slacker. 2. I went back to work full-time and my world got crazy and 3. My kids asked me not to. Simple as that. Neeley has been going through a tremendous amount of medical issues these past 2 years and she asked me not to share our life with the world. She wasn’t ready. She didn’t have to be ready. It is her life and I respect that. I told her I would walk away from the blog if that is what she wants and she did. It made her sad to even read things about Halle. I respect that. I respect her. But these past two years, she has grown in a way I have never seen before. Her self-confidence has grown. Her acceptance of herself has grown. Her faith has grown. And her desire to make a difference in this world has grown. She sees the importance of sharing her story and better understands why I feel called to share our family’s story. I hope in some small way, that our story helps people. Helps people coping with chronic illness. Helps people cope with grief. Or helps professionals see a small glimpse into the human side of medicine. Whatever the reason, I hope our blog is able to help people in some small way. If anything, I know it helps me. Neeley and Ben respect my desire to share our story and have agreed the blog can continue. Obviously, I will continue to get their approval before I talk about them. I even think Neeley may start her own blog on the Foundation website. She has a voice that needs to be heard and I hope that one day soon, she shares that voice with you. But today, today we talk about Halle.
Halle’s Play List
I have been thinking of Halle a lot lately. I think of her often, but sometimes I am flooded with her memories and miss her more than usual. There is no reason why, but grief just hits me out of nowhere. It’s as if I had the wind knocked out of me or someone has kicked my feet out from under me. While it is painful, I have learned to welcome this grief. With the grief, comes the memories of my sweet girl. I smile when I think of her like this – then I cry. These past few weeks I have cried a lot. I cried in the shower. I have cried on walks while my kids were at swim and I cried in the car on the way to the office. If you have seen me on campus lately, now you know why I haven’t been wearing mascara to work. Regardless of the pain and tears that come with this all-consuming grief, I find comfort in knowing Halle is still with me. I can still hear her laughter in the air sometimes. And sometimes, I still feel those sweet Halle hugs around me when I need them most. It is during those difficult weeks that I beg Halle for a sign – just a little sparkle to cross my path to know she is still with me in my every day. I waited for her sign and was surprised when it didn’t come.
I asked God for help…just a little encouragement to know I wasn’t alone. I didn’t tell anyone and still I heard nothing. Then this past Monday, while sitting in a doctor’s appointment for Neeley, I received a Facebook Message from an unlikely source: a woman by the name of Tanell. My mom mentored her when she was a child and she has been a part of our family ever since. Her message read: “The Holy Spirit told me, God has not forgotten about you or your family. He always has someone praying for you and a way to remind you of His love and HER legacy.” WOW! I needed to hear those words more than ever that day. I felt a peace in that moment – a peace that not only was God with me in that darkest of days, but a peace that Halle was with me too.
I knew Halle would send her sign and show me she was still around. I would get that sign soon enough…I just needed to be patient. So, I waited. And then today, I was hurrying home to get the kids to their cardiology appointments. It was not the best afternoon for me. This was Ben’s first appointment with cardiology (ugh – looks like he has P.O.T.S. now like his sisters) and Neeley’s fourth with that doctor this year. The kids had been slammed with more “medical stuff” lately and I was not looking forward to a long specialist appointment. I had all that on my mind driving home – that and the fact that I needed to submit a grant by this evening and I had to cook dinner and give the cat his medicine and feed the dogs and get the kids to swim…and…. I couldn’t handle anything more so I plugged my phone in the car and turned up the volume. But the radio wasn’t on. Some how the auxiliary function was on and before I knew it, my phone started to play one of my playlists…it was Halle’s Playlist. It was Halle’s sign. As I looked at my phone, I knew Halle was with me as I hit shuffle and let the songs play. Here are the songs from my ride home today….in the order that they came up from Halle’s Playlist.
Die Young, Kesha. The lyrics that stood out to me in this song were: “Let's make the most of the night like we're gonna die young… We'll keep dancing till we die.” She knew she was going to die young. We all did, but no one wanted to say it out loud. Halle was the brave one to ask permission to go into Hospice, she asked us to let her die with dignity. She thanked us for letting her go. We went home that night after we signed the paperwork to enter Hospice and you know what we did? We had a dance party! The video of us all dancing the conga line that night popped up in my Facebook memories this morning. She kept dancing until the end.
Brave, Sara Bareilles. I couldn’t help but smile – Brave! My girl was just that…BRAVE. She endured more pain than in her short 15 years on this Earth than most people do in a lifetime. Brave. You were just that my sweet Halle.
Chasing Cars, Snow Patrol. The lyrics that stood out to me were: “If I lay here, If I just lay here. Would you lie with me and just forget the world? I don’t quite know, how to say, how I feel.” Those words resonated with me. Halle often turned to music when shouldn’t could grasp what the world was giving her. She was angry and she was in pain. She desired a normal life but she knew those things weren’t possible. I would often go in and try to talk to her about how she was doing. We called them our “check ins.” She often struggled to find the words to truly describe how she was feeling. Instead she would ask me to just lie down with her and she would play the songs that spoke to her and we would try to just forget the world.
When I Was Your Man, Bruno Mars. Oh, she loved Bruno Mars! But I wondered what message was in this song for me. And just like that, the lyrics popped out: “My heart breaks a little when I hear your name.” My heart does break a little when I hear her name, but it also swells with pride in the saying Halle Grace. She was an amazing girl.
Waiting for Superman, Daughtry. “And she smiles. Oh, the way she smiles. She’s talking to angels. She is counting the stars…she’s dancing with strangers…” This is how I imagine Halle in heaven. She is talking to angels. Dancing among the stars and sharing her joy with others.
Dynamite, Taio Cruz. “I came to dance. Dance. Dance.” Need I say more. I went from crying to laughing in that moment. The radio blasting and I am dancing right there in my car driving down Bloomingdale Avenue as I continued to listen to Halle’s Playlist.
Home, Phillip Phillips. I was nearing the house when this one came on. “Take me home. Mommy, I am coming home.” Oh, how the flood gates opened when this came on. You see, this song was special to Halle. When she was little and at the hospital for an infusion or surgery or blood work, she would cry and beg me “momma take me home…I want to just go home.” As she got older, any time she was in pain or scared or stressed, she would just tell me she wanted to just go “Home.” I would tell her we would be there soon. Some days she would beg to go home, even when we lay in her room as I tried to rub the pain out of her joints. I never knew what she meant by home. I assumed she just wanted to be back in our house, were she felt safe and loved. It wasn’t until she entered hospice that she finally told me, “Momma, I’m now ready to go home. Are you ready to let me go?” “Halle, is that what you have meant all these years? Every time you begged to go home. When you were pain. When you came out of surgery. When you were sad and lonely?” She just nodded and then softly said, “Yes Mommy. I just want to go home. God will take my pain away. I will miss you all so much but I am ready now. Please don’t forget me. Please don’t stop saying my name. I love you momma. Thank you.” My heart ached – all these years she knew she would be going home at a young age and I had to let her go. Let her go home. We had nothing else to say in that moment. So, we just turned on some music and let the lyrics talk for us. It looks like her lyrics are still talking for her…telling me she is safe and loved and Home.
Thank you for sharing your playlist with me today Halle. You knew I needed a sign and this was a perfect one from you. Music was your voice and I heard you again today.