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  • Jill Heilman

Finding Myself at a Crossroads

Halle and I being silly on one of her better days.

June has been a month of life lessons. I am realizing so much through this journey of parenthood. Parenting children with chronic medical issues and now, for the past year, also parenting children grieving for the loss of their sister, all this has brought me down a unique road that I had never anticipated when I first became a mom. A road with many deep, dark valleys but also with joyous peaks that keep this adventure moving forward. My path zig zags and crosses intersections I would prefer to avoid, but at the same time, this route brings beautiful overlooks and silly pit stops along the way. During this month, I have gained more of an appreciation for the need to take this ride at my own pace and to be open to the messages brought to me on my journey. Please forgive me for the car/road-trip analogies…once I get on a theme I tend to run with it, or should I say ride with it. So buckle up, here we go.

1. Grief is as individual as we are.

The first message I learned this month was something I have known for a long time, but have seen more clearly in recent weeks, that we all grieve differently. The way I grieve is different than my husband which is different than my children which is different than… You get the idea. Also, we grieve differently based on our loss. I grieve differently for the loss of a child than others may grieve from the loss of a spouse or the loss of a parent and no one’s loss is greater than another’s. Losing someone just plain, out right sucks! But as a whole, I have learned our culture does not embrace the concept of grief whole-heartedly. The process of grief is normal, natural, messy, confusing, sad, terrifying, loving, and joyful all at the same time. Yes, I said joyful! But we will get to that in a little bit. Grief is a part of life. A part of life that needs to be endured and embraced.

My husband has felt the pressure of grieving stronger than I have at times. He works in corporate America and “they” want to know if he is ready to get back to work. We are past all the holidays and we are in a new year so we need to move forward. In part, I agree. He has a responsibility to his work and a need to put his focus and attention back on to that. But at the same time, he lost his baby girl. She made him a daddy. He will never get to teach her to drive. He will never walk her down a wedding aisle. He will have that loss forever in his heart, but he has to set that aside and get back to work. Right? How does he do that? I am not sure, but he does. He actually finds the distractions of the job comforting at this point. It gives him the ability to spend his energy on another area of his life. He gets to escape. But what many others don’t understand is that he will always grieve the loss of our Halle Grace. Always. He has just learned to put on a smile for others more often, as I have too.

While John has focused much of his energy at work, I have chosen to focus on The Halle Grace Foundation. You see, I was Halle’s primary care giver. In those early years, I would spend countless hours at therapy appointments, doctor visits and hospital stays. All my energy was focused on healing and caring for her. Then again in the final years of her life, as her health began to deteriorate more rapidly, I was caring for her needs 24/7. I didn’t resent that time – rather I embraced it. I was acutely aware that Halle’s days were limited. I was able to treasure each and every moment and cherish that time with her in hospice. Whether it was snuggle times on the couch or crying on the floor, I was able to give her my all. Don’t get me wrong, it wasn’t easy and I wish that on NO ONE! But I held on to those days dearly and found an inner strength that kept me going. A strength that I knew was inspired by the strength Halle was giving to us at the end. She kept us all laughing and loving each other. She comforted us throughout this time and we in turned tried to give that right back to her. Where one road ended – another began. I lost the ability to parent Halle in the physical world, but I was presented the challenge to honor her life from that day (July 19, 2015) forward.

2. There is no judgement in how we cope with loss especially in those first few months, and it is important to be open to any new, positive ways to cope from here on out.

After Halle’s passing, I turned the corner onto a dark and winding road. I didn’t always choose the best ways to handle her death, as I often turned to food and wine as a support. I looked for anything to numb the pain. I also turned away from others – especially those closest to me. I couldn’t see my mom for almost two months, which is rare for us. I didn’t want to absorb that sadness, rather I wanted to do anything to avoid it. To do anything to numb it. I soon realized that probably wasn’t the healthiest approach to grief and I was well aware the scale was rising. I was also aware my other two children needed their Momma and I needed them. I knew John couldn’t face this on his own, but rather we needed to all pull together and rely on one another to find our way back on to the road. At the same time, I learned we each needed to respect one another for our unique way of approaching our grief over losing Halle. I took the time to focus on this Foundation, reconnect with my faith and take better care of my body. Neeley delved more into her soccer and Ben escaped into the world of books. John, the city boy, on the other hand bought a new John Deere lawn mower. Need I say more?

3. Each milestone date, doesn’t always have to be sacred or sad.June 2, Halle’s birthday was a day to embrace.

Before Halle passed, she asked me to keep her name alive and to find a way to keep her legacy going far beyond her time in the physical world. One of the best parts of this year, in regards to the Foundation was focusing on Halle’s birthday. She loved to celebrate life and loved her birthday. She was the most fun person to shop for, because she loved and appreciated every gift she received! Ask anyone in our family – Halle had the best expressions when she opened a gift and she ALWAYS would give you a hug to say thank you! We also knew Halle appreciated the distraction a new gift brought when she was in the hospital. Whether it was a balloon or a new toy or itunes gift card…she was just grateful for someone coming to visit her and bringing joy to her day.

It was this true appreciation for giving and receiving that gave us the idea to start an annual toy drive for Halle’s birthday. So on June 2, 2016, through the generous donations from many of you, we were able to deliver over 300 toys to our local children’s hospital, St. Joseph’s Children’s Hospital in Tampa. Halle spent much of her last two years in that building and one bright spot of her stays was when the toy cart came around to offer her something new to bring a smile to her face. When she was little, she welcomed a new Barbie doll or a snuggling stuffed animal. As she got older, she loved an itunes gift card or a new board game to play with her friends who visited her during her stay. She truly taught us to find joy in the simple things in life.

4. Joy is hidden in the most difficult situations.

We spent the rest of Halle’s birthday doing the things she loved. We ate at California Pizza Kitchen, where I ate a new item on the menu, Halibut! We had to chuckle because we used to call Halle that when she was a baby as slept with her hiney in the air. We shopped at Books-a-Million and saw many signs of Halle being with us. We found sparkly toys, jelly bellies, some of her old book favorites and so much more.

We then came home and baked Oreo Cupcakes, as that was Halle’s favorite! The kids, my mom and I laughed as we crunched the Oreos and the bag went flying across the room, spewing Oreo crumbs in every nook and cranny! We laughed because we knew that was something Halle would have done too! We then sent out last minute text invites to a few special, local friends to join us for the 30+ cupcakes we had just made! Okay maybe we got a little out of hand on the

cupcakes! We had to make a pink batch with glitter, as well as the Oreos! We were surprised to see so many people respond to our spur of the moment birthday celebration for the Halster! Beth (our dear friend who we bought our new house from and happens to have been Halle’s speech pathologist for 7 years) and her daughter Allie (the kid’s former babysitter) joined us! Many new neighbors came out with their kiddos to help us gobble up the birthday treats and learn more about our Halle Grace. And Ms. Tracey (our dear friend and Halle’s Girl Scout leader) came with Halle’s two best friends, Caitlin and Lizzie. We spent hours laughing and talking and sharing our favorite Halle stories. It turned out to be a fun day that we celebrated as two different roads crossed paths with both old and new friends celebrating a day I had once dreaded.

5. Some days are tougher to face than others, but the key is to face them just the same.

During those first few days of June I found myself take a step back and watch my friend’s kids take exams, get their driver’s licenses and look for summer jobs. It, obviously, reminded me of what Halle was missing. My heart ached wishing she could have experienced some of these things too. This was the first year Caitlin threw the End of the Year Party without Halle (an event that duo had had together since they were three)! I wished I could have been there for Halle’s best friend, but I was in a self-preservation mode during that week. I was trying to except those loses, but at the same time stay upbeat and positive for Neeley and Ben! In early June, Neeley finished her first year of middle school, made an ECNL soccer team and with the help of her team, won the last soccer tournament of the year. Ben finished off 4th grade with flying colors – straight A’s despite missing around 30 days of school! He also ended his basketball season with his first basket ever!

I have learned that while grieving for the loss of Halle will always be a daily struggle – we are on road with other cars, beeping and honking, telling us to keep moving forward. I hear this message loud and clear, that we must carry on in our journey – it is what she would want us to do! Halle is the last person that would want us to wallow in our sorrow. Every day she woke up feeling okay, she wanted to get out and do something. She never took a life for granted.

So that is what we are doing! This month we have hosted several sleepovers for both Ben and Neeley. We have had a house full of kids running around, swimming, playing, dancing and singing! We have gone bowling – with the bumpers! Surprisingly I still got third place! We have gone to the beach, played chess, celebrated other family birthdays, enjoyed family time, celebrated Father’s Day, attended soccer meetings, rented movies, worked out and so much more. We have learned to find the joy in our daily life again.

Does that mean I don’t love Halle? Does it mean I will forget her? NO! Although, I once worried it did. But I have learned just the opposite, I am learning to live a life that is worthy of her because I know she is watching over us! I don’t want to let her down – I know she is with us on these next adventures! No matter what road is ahead of us.

6. I am still the Mom to two kids on this Earth and there are still real medical issues that we must face together. Fear is there – but again so is joy.

June also brought me back to reality. While it has been fun to celebrate Halle and her Sweet 16 and it has brought so much fun for the kids and I as we enjoy sleeping in and going on new adventures, it has also brought us back to the normal “Heilman Ways”. Ben still has monthly hospital infusions. The kids have to go for lab work and we must follow up with their Immunology specialist. We still have to remember to take daily medications to keep asthma under control and infections at bay. Chronic illness doesn’t disappear for the summer, as much as I would like it to. Granted, we may slack off on some of the daily medications, but the reality of serious illness is always just around the corner. What do we do about that? Well, we take Halle’s advice of course and head to the library! At least that was the case for us this week. That’s right, we found a way to escape from the worry that lingers as we all found a good book to delve into. Ben has been dreading next week’s infusion so he asked if we could go get new library cards and read! Each of us checked out several books and movies and read and laughed and cringed and giggled and talked about the stories we were reading. We found comfort the same way Halle found comfort – through sinking ourselves into a new world that lets us get lost for just a few hours of the day. Are we avoiding our life? No – we know what our reality is, but we found a way to bring a smile to our face in those quiet moments that we used to dread. At least that is how we have faced this week in the Heilman Household. As for next week…well we will have to see where that road leads when the time comes.

7. Others have found their own way to celebrate the girl that means so much to us all!

As a mom who lost her child, I often get lost in my own sense of emptiness and forgot the rest of those that loved Halle are grieving too. I don’t do this intentionally. After losing my child, I found that I work from the inside out. I get myself out of bed, I breathe, I drink coffee and then I face the day. I consider my other two children and what they are facing and how life is treating them. I then focus my attention on John and so on. Usually by the time I reach the needs of my immediate family, I forgot that others loved Halle and are missing her too. This month, I was reminded that others are finding their own, unique way to honor my sweet girl. Take my brother, Matt, his wife, Cinda and his teenage daughter, Meghan, as they are currently taking a

two-week road trip (how appropriate for my analogy) to travel to D.C. and NYC this June, and they are taking Halle with them. How you might think? They took several of our “Halle Grace” bracelets on their trip and are giving them out along the way with a card about Halle and our Foundation. How cool is that? One of their first stops was in Washington D.C. at Representative Rich Nugent’s office. He is the Florida politician who helped us get Halle a Library of Congress card posthumously. This was one thing on her bucket list! Matt, Cinda and Meghan also ran into some Girl Scouts at the Capital building. They were able to share Halle’s story as a fellow Girl Scout and then gave them each a Halle bracelet to remember them by before they hit the road for their next stop.

This is just one family’s unique way of honoring and celebrating Halle. I am learning there are many others who think of Halle often and say her name, even people who have only gotten to know her through this Foundation. It seems I have found myself at a new cross-roads. One in which, I can see where I have come from and one where I see a road still to be traveled on. While I started this ride called motherhood with five people in my mini-van, me and John, Halle, Neeley and Ben, I worried that after Halle’s passing I would find our car too big for us to handle. I worried that the empty seat would be too difficult to look at as we travel forward, but alas, I now see that the seat is still full. In her place, I find joy, love, and energy that derives from my favorite co-pilot. Thanks Hal – let’s see where the next road takes us. Who knows, maybe next trip, I will even let you steer.

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