To say these past few weeks have been tough on Neeley would be an understatement. I sometimes feel like a broken record. This past year, especially, she has faced so much physically and medically…to the point that other kids make fun of her and mock her and tell her she makes all this up for attention. The Momma Bear in me wants to say “WTF? Try living in her shoes for a couple days!” But then I calm down a bit, say a prayer and just let Neeley know I am here for her. Some days we cry. Some days we eat Ben and Jerry’s. Some days we yell and scream and say life is not fair. But most days we dust off our shoes and step out the door and try to live our day to the fullest.
It wasn’t until recently that Neeley was able to step outside pain free. It was around Thanksgiving that we found a doctor that offered a procedure that almost completely eliminated her symptoms associated with the occipital nerve damage she sustained from two concussions. Almost immediately, the headaches, nausea, dizziness and vomiting disappeared. She could finally focus on swimming and school with her whole heart, mind and body.
Unfortunately, about three weeks ago, the pain began to come back. We quickly called and got her set up for another round of nerve injections. A few days before the procedure, Neeley had another blow – her shoulder popped out during a swim practice. She decided to rest her arm the week leading up to the injection procedure. She was so hopeful she would again be pain free soon.
But in true Heilman fashion, nothing went as planned. There was a mix up in scheduling and the wrong doctor was on the schedule for her injections. It was 7am at All Children’s and I was ready to go home. “No please mom, I am in so much pain. Please, let’s just go with this doctor.” Needless to say, we did and it did not go as planned. We are just 10 days post procedure and Neeley has seen little to no improvement. Her headache and neck pain persist. On top of that, her shoulder pain continue to get worse. This past week Neeley had three doctor appointments and an MRI – as we are trying to see what we can do to alleviate the pain in both the shoulder and her head.
As we approached the end of a crazy week that seems to be wrapping up another tough month for Neel, I remembered we had a special event planned for her Friday night. This late-night appointment comes with its own highs and lows. You see last night Neeley got a visit from her Make A Wish Granter!
The Make A Wish Foundation is a wonderful organization that provides a once in a lifetime experience for kids with life threatening medical issues. Two of my kids have already been Wish Kids. Halle had her wish granted when she was just 3 ½ years old. She had wished to meet Cinderella and become a princess. Her Wish Trip far exceeded any experience we had hoped for and for me, it was the first time I saw my little girl happy … truly happy. It was then that I realized how sick she really was. Up to that point, she had lived a life only knowing pain and medical procedures but the Make A Wish Foundation gave her a chance to escape the medical world and enter a true fairy tale. We worked hard to create fun memories for Halle from that point on…ones that allowed her to escape the doctors and hospitals and to just be a kid.
Ben was also a Wish Kid. When Ben was six, he had been hospitalized off and on for three months with a serious infection that his immune system was struggling to fight. We decided it then time to call the “Genies.” Make A Wish again exceeded our expectations. Legoland Florida had just opened and Ben wanted to meet a Lego Engineer and create a Lego structure that would stay in Legoland forever. He was Legoland Florida’s first Make A Wish kid. He spent an entire day with an engineer and learned all the ins and outs of Lego Building. He chose to make a “Wishing Well” so when others saw it in Legoland they would think of the Make A Wish Foundation.
These were amazing memories the Make A Wish Foundation provided our family – ones we will treasure for a lifetime. I am smiling just remembering those trips with my children, yet my heart aches for the reality of my children’s diagnosis. We try not to think about the fact that their immune deficiencies are life threatening – its their reality, but we do are best to normalize life and keep things grounded at home. After Halle’s passing, the true reality of the severity of immune deficiencies became harder to escape.
Neeley entered that reality last year when her immune system faltered as well. With her diagnosis, Neeley’s life turned upside down (along with the medical issues that came from her concussions). Neeley has been numerous doctors’ appointments, ER visits, lab work, MRIs, CT scans, and weekly infusions. All the while, she has maintained straight A’s (even with over 30 absences) and done her best to learn an entirely new sport over the course of the past 11 months.
Along with this new reality, Neeley also qualified for becoming a Make A Wish Kid. For John and I this is a bittersweet blessing. It is heartbreaking that we are now parents to three children with life threatening immune deficiencies. Three kids who have/had to endure the reality of life in the medical world. But it is also heart-warming to know Neeley qualifies to become a Wish Kid. We are overwhelmed with the knowledge that Neeley will be blessed with an amazing experience that will provide her an escape from her current medically challenging world and provide us all with memories we will cherish a lifetime.
So, this past Friday night, Neeley started her journey as a Wish Kid. The first step was meeting with her Wish Granter who took the night to get to know Neeley and learn more about her ideas for her Make A Wish! At 8:45pm the knock at our door was a little extra special…because her Wish Granter, was also our dear family friend, Kelley Kilpatrick. Kelley used to volunteer in Halle’s Kindergarten class more than 12 years ago. Kelley and her entire family have had a special place in our family over the years and I was so glad to know that Neeley’s Wish Granter would be Ms. Kelley. As a pediatric oncology nurse, Kelley knows the importance of creating special memories for kids and she brings an exciting energy to children’s lives who are facing difficult medical issues. She brought that same energy to my sweet girl last night.
Our night started with ice cream sundaes, courtesy of Ms. Kelley! You can’t go wrong with cookie dough ice cream and toppings galore! Then Kelley “interviewed” Neeley on all her favorites (color, food, movies, etc). The two soon delved into Neeley’s Wish ideas and what that would entail. We somehow fit in some stories of boys, bucket lists and dating advice. It was certainly a night to remember 😊
After a long, painful week, Neeley was able to end it by spending the evening with a sweet, family friend who shared in the excitement of helping Neeley Make Her Wishes Come True! As for what Neeley’s wish is….well we will have to save that for another blog.