Wow! Well, it is shocking to believe that 737 days have passed since Elijah’s initial Legg-Calve-Perthes Disease diagnosis. We spent so many days in a fog that it is sometimes still hard to believe that Elijah has confronted so much. I get asked on a daily basis from concerned and curious friends how Elijah is doing, and because we also began this blog as an encouragement to those who would be diagnosed after Elijah and would need a place to read, research, and attempt to understand, I wanted to pause to give an update.
In October, when we were horribly concerned that Elijah was regressing (again) when Doc asked us to make a sudden trip to Baltimore after unclear x-rays, we were joyously surprised that after Doc ran his own set of x-rays and physical evaluation he CLEARED Elijah for all activity as we all continue to watch what the bone does because the bone is still partially GONE. I relive that moment…..a lot. “Elijah can begin resuming physical activities.” Those words. While most moms are wishing their boys would sit still for 5 minutes I was ecstatic to hear, “Elijah, you can start running.” Although those were words we had craved for years, they also were words that brought upon a whole new set of questions, of fears, of emotions, of expectations.
So, we returned home and tried to navigate through this new season with Elijah, letting his pain be our guide with his activities. Doc said to give him permission to tell us when he begins hurting or when he is sore. This was a new normal for us as Elijah has never been one to just sit back and let life pass him by, and this would be no different. He immediately wanted to play basketball. I was a hot mess as I had to wrestle with the nagging questions: Will he be in pain? How will he run? Can he run? Can he keep up? How will his teammates treat him? How will he feel after being sidelined for 2 years? How will he handle not being as agile and athletic as he was before Perthes? What if he falls on his hip (and, oh how he did)? Of course, Shayne reminded me that he’d be just fine, and he was. That first game had me on the verge of tears the entire time as I watched my baby……..run the best he could. 2 feet gliding on the gym floor. He may not have been the swiftest, most poetic runner, but he was moving AND smiling that big beautiful smile. A BIG thank you to his coaches and teammates for supporting him. Elijah is a competitor at heart and to see him competing again was miraculous for me when 2 years earlier they said he would never play ball and compete again.
Elijah then got right back in the rotation at Mosaic where he serves on the Mosaic Kids worship team singing, dancing, and serving as a sound technician. He also had the awesome opportunity to love and serve families at the Hope Cafe in downtown Cincy. Of all the activities Elijah gets to participate in seeing him serve others trumps them all. So grateful for our Mosaic family and how they have rallied around us and given him the chance to serve and develop his gifts.
Elijah then wanted to try lacrosse. Now, this would by far be more physical then basketball, and honestly the only reason we wanted to give him permission to play is because he always wanted to play pre-Perthes and we could never work it out due to his baseball schedule. We hesitantly agreed and crossed our fingers that he could handle it. Although, he is of course working to regain strength and stamina, he lights up on the field; not because he is a star, but because he CAN be out there shoulder to shoulder with his teammates and eye to eye wth his opponents. Been a cool learning curve learning about the lacrosse life. His coaches and teammates have been extremely patient and encouraging with him. What a gift.
I can’t forget to mention that back in the fall Elijah tried out for the Loveland Show Choir (Loveland has a stellar program). Again, it is never a surprise to me that Elijah wants to do everything. He LOVES people. He LOVES competing. He LOVES traveling. He LOVES performing; therefore, making show choir a perfect fit. He has grown and developed so much, traveled (even got to perform at the Grand Ole Opry in Nashville), and relished in all the victories! Show Choir has been such a highlight!
So, as we turn the corner with our eyes set on summer, Elijah continues to participate in physical therapy, has just begun some strength training, and engages in daily stretching sessions. We have an upcoming x-ray scheduled where Doc will see how the bone is hardening, if the bone has begun any regrowth, and how the bone is shaping. One misconception about Perthes is that people assume that because kids are walking and don’t have an ex-fix attached to their hip that all is well. I wish that were true, but sadly it isn’t. There are typically other surgeries ahead, chronic pain, and the struggle of trying to “get back” to the active lifestyle they once knew. I’d like to say that Elijah is the exception and that he will just resume his previous strength and stamina, but I honestly have NO IDEA what is ahead for him. And, I would be lying if I said that I still don’t have days when I question why, or wonder why my boy, or beg God to just restore him, but I would also be lying if I didn’t share that I have far more days that I submit and surrender to the fact that I TRUST JESUS with Elijah. The Lord knew him and loved him even before I did, so I know I CAN TRUST HIM, but sometimes when someone you love is hurting it’s just…..hard. My dear friend shared with our church recently that we must stop settling for only what we can see. This is SO TRUE. Most of what I have seen of Perthes has been ugly, sad, debilitating, expensive, confusing, hopeless, and more. However, I am going to choose daily to trust in what and who I cannot see, for the Lord has called us to walk by FAITH. So, even if Elijah’s journey takes another detour, experiences another setback, even if God doesn’t restore his body the way I believe Elijah hopes He will, HE IS STILL GOOD.
Heartfelt thanks to the many, many, many of you who continue to lift Elijah up in prayer, encourage him with a high five, or simply inquire about his well being. Your love and support have offered us so much strength. WE THANK YOU. Please keep praying as Elijah continues to #tackleperthes one play at a time.
Below are pics & videos in recent months. Makes my heart pitter-patter. Determined to find purpose in this pain……may these serve as an encouragement to those new families just getting the news that their child has Perthes.