Today was a bit of a tough day for me. If I am truly being honest with you, the past several days, weeks and months have been tough…but today, I had to suck it up a bit more than usual, swallow my tears, ignore that tug in my heart and force a smile on my face just to get my grocery shopping done. You see, Halle’s birthday is next week, June 2nd, and we usually celebrate the amazing life she was given…15 years on this Earth, while it was not enough, I am truly grateful for each one of the 5,522 days she lived…but this year we are unable to celebrate her through our annual toy drive so I wanted to make extra special cupcakes, hence the trip to the store.
Anyway, I was out shopping for cake mix and frosting to make Halle’s favorite, Oreo Cupcakes, we make these each year since she passed away and try to decorate them a with a new theme each time… I digress again…back to Publix…when I got to the cookie aisle and reached for those black and white delicious treats, the flood gates just opened. Where did these tears come from? I was just running in for a couple things. How does grief just hit you out of nowhere sometimes?
I guess this wasn’t really out of nowhere – as I mentioned it has been a rough few weeks. I guess I should back up a bit. There are a few things that have made me think about my girl so much more lately. The first of which, many of us are dealing with it – COVID19. It may have hit our home a little differently than most. You see, having kids with immune deficiencies puts our house on hyper-alert status. We already wash everything, scrub our hands fiercely and hand sanitize at the drop of the hat…but this, this has brought us to our knees. Not just when we scrub our floors more or when we are looking for another board game to play as we shelter in place, but it has brought me to my knees in prayer. I have already lost one child I can’t lose another! This fierce beast of a disease has brought our entire world to a halt. Our family is no different. We sheltered in place for 8 weeks straight and have only recently begun to venture out when necessary. The Heilman kiddos are the ones they talk about on T.V., the most “at-risk” population. Because not only do Neeley and Ben both have immune deficiencies, but they also both have asthma, POTS, Ehlers Danlos and MSCD. What can I say, Heilmans “Go Big or Go Home.” Wait we are already home (insert laughter at my own joke)…I digress again. This COVID thing has brought my biggest fear back to the forefront of my life. It reminds me of the loss I have already felt for my sweet Halle Grace who lost her battle to chronic medical conditions five years ago and it has reminded me that my other two children are not invincible. They are always at risk for illness and infection, but now more so then ever. Hence, the flood gates on Publix’s cookie aisle.
Those tears probably came more quickly this year for another reason as well. The same week the Heilman’s began to hibernate for the COVID season, we experienced another great loss. One of Neeley’s dearest friends passed away unexpectedly at the same age Halle did, 15-years-young. This hit our family so incredibly hard. Neeley and Avery were amazingly close friends. They looked out for each other, as they both knew what it was like to live with chronic illness and both desired to be treated just like everyone else. They truly had a connection like no other. Neeley’s heart was shattered and she will live with the loss of her friend the the rest of her life. My heart broke that day in March too. It broke for a friend. It broke for another Momma who I knew would be going through the most painful times in her entire life. No parent should ever have to bury their own child. Regardless of the rawness of experiencing that pain, I am honored to be there for my friend as she walks her own journey. Perhaps tears came more today for another family who will be planning birthdays without their own child.
Perhaps those “Oreo” tears popped up out of nowhere because I am experiencing Mom-guilt over Halle’s birthday this year. That damn COVID caused us to cancel our Annual Halle Grace Toy Drive for 2020. We have been collecting toys every Spring since Halle died and deliver them on her birthday as a way to celebrate her life, by bringing joy to others. Last year, we collected close to 1,000 toys and we just felt like we could not risk having all those people drop off deliveries to our house nor did we feel we had the capability to properly disinfect hundreds of toys coming through our doors and have them safely delivered to our local children’s hospital. I felt like I failed Halle this year. Maybe that was why I was crying over cookies.
Most likely it was a bit of everything. It was a perfect storm that was bubbling into a full-blown panic attack right there on aisle 10 as my lips quivered behind my purple mask and the tears began to fog up my glasses. I realized I was clinging to the Oreo bag so hard the crinkling was drawing the attention of my fellow shoppers who thought I was obsessed with these cookies.
I slipped passed the lady and quickly and quietly placed Halle’s favorite cookies in my cart. I began to question if I could make it through the rest of my shopping list. I had to pull my shit together – but how. I did the only thing I could think of. I prayed. I prayed for God to send me a distraction to take my mind off my sweet girl. I prayed Halle would forgive me for not doing a toy drive in her memory this year. I prayed I could keep moving forward. I prayed my glasses would defog so I could see where the hell I was going! I pushed the cart around the corner and straight into the husband of one of dear friends. Steven had no idea I was hot mess – or maybe he did, but I am going he was clueless since my face was partially hidden away. Regardless, my 6'2" distraction was his jovial and friendly self. We talked about our kids and work and everything except why my glasses were a bit fogged over and before I knew it we were saying good-bye and off I went. I finished up my shopping and realized God had answered my simple prayer.
I entered the check out lane feeling a little strong and much calmer. But as I placed cake mix and frosting on the conveyor belt, I prayed, please Lord don’t let the cashier ask who I was making a cake for.
Well…let’s just say not all my prayers were answered the way I had hoped today. Not only did the cashier ask if I was making a special cake, but she asked who it was for and how I planned on decorating it and more. I kept it simple and tried to smile behind my mask. I checked out and headed to car as quickly as possible. As soon as I got the groceries loaded and myself buckled in, the tears just started streaming down my face. Those tears were for my Halle and for the pain of missing her and how that pain is always with me, so raw and real. Those tears are for my failure as a mom – wishing I could do more to honor the memory of my sweet girl. Those tears were for my fears, the ones I have been avoiding dealing with, the real fear of losing another child, as my other children’s mortality has been thrust to the forefront of every choice we make right now. Those tears were there for having to tell my kids no to so many things they want to do but can’t because their bodies are not made like their friends. Those tears were for Avery and Alysin and her family and the loss they now must face. Grief is heavy and strong, and sadness can be all consuming.
After getting home, I was feeling a bit down and decided to have a little pity party for myself as I decided to go for a walk. I grabbed a shirt to change into for my workout and right there in my closet, all those tears turned to out-right laughter. Not just any laughter, but air-gasping, pig-snorting, belly laughter. You see, the shirt I had snatched in a haste read: “Suck It Up Buttercup!” I laughed more heartily as I knew right then and there, my Halle Grace was sitting with me in the closet – telling me the pity party is over. Stop those tears and suck it up. Halle went through so much pain and disappointment in her life that at some point she had decided that was it – there was no room for feeling sorry for herself…she was going to learn to live her life to the fullest. She chose to find the joy in every day…even on the toughest of days she would find something to smile about and she had little patience for those who whined around her. I remember one day when she was just 6 or 7, we were walking to school with her friend, Caitlin. Caitlin fell and bumped her knee. She instantly started sobbing and saying she couldn’t walk the rest of the way to school. Halle was the first to be by Caitlin’s side and hug her and inspect her injury. Upon seeing a little skinned knee, Halle quickly quipped, “there isn’t even any blood…suck it up buttercup.” Caitlin looked up in disbelief as Halle continued “you will be ok…I will get you a band-aide and ice at school if that makes you feel better. Come on, let’s go.” Caitlin thought it over, got up and off they went, dancing and hobbling the rest of the way to school.
That is how I saw Halle talking to me today in the closet. She led me to that shirt and told me to Suck It Up Mom. You will get through today. Some days are tough. Remember to find the good in each day, even the rough ones. Find the joy! So that is what I did.
I decided to find other ways to honor my Halle Grace on her birthday this year.We are encouraging others to find a meaningful way to give back to others.To find ways to spread that joy.Three ways we are asking others to consider giving are areas that directly impacted Halle’s life, actually, all our kids’ lives. When Halle was young, she required blood transfusions to stabilize her health. Maybe you will consider donating blood to help others. Halle also required gammaglobulin infusions to maintain health and Neeley and Ben continue to receive weekly gamma infusions that are
comprised of others’ donations of plasma to support their immune deficiencies. Perhaps you will consider donating plasma on June 2 this year (or another day). I know that would bring joy to the recipient of your donation! Some of the most joyful times in our family and the most treasured memories we have are the three Make-A-Wish trips our kids were blessed with. Maybe you will consider donating to that amazing organization to share joy with others. Or perhaps you have a cause near and dear to your heart – if you choose to donate to them to spread a little joy, remember Halle. Halle was the girl who faced too much pain in her life yet spread so much love and joy.
Happy Birthday Halle Grace!