A few weeks ago I was in the dentist’s office getting a cavity filled. My first cavity in 18 years, so no judging. 😉 I was lying in the chair doped up on laughing gas when I had a sudden flashback of my son in pain. My youngest child, Jackson, flashed across my mind. He was 3 in my recall and I remember huge eyes with horrific pain and fear in them that I had never seen before. I remember him reaching out to squeeze my hand and I let him til the pain subsided.

It was summer and we were enjoying my youngest brother’s wedding when out of the blue Jackson began to limp. We thought he had jumped in the hotel pool wrong and tweaked something, but after coming home from the festivities his limp came and went for 2 weeks. I decided to take him into the doctor. I took him in to see our pediatrician and after a 30 minute look-over they deemed him fine and that maybe he bruised a bone jumping or playing. We went home thinking it had just been some fluke. Over the next few weeks though, it would suddenly hurt enough to where he could not walk well or run. It was very concerning to us. This was our little agile “spider monkey.” This was our son who at 5 months stood up in his pack in play without holding the sides, at 6 months he could shimmy his way out of his crib by putting one foot on either side of the rails and inch up until he could swing himself over the side. At 18 months he did a chin up onto the kitchen counter to reach the sugar bowl; so for him to suddenly not be able to run, jump or play, we knew something was up. I took him back to the doctor. Again she could not find a reason for his limp and of course in that moment his limp was not very pronounced. I went home a bit frustrated but thinking I was probably over reacting. A week later he began to cry out in pain every time he took a step. I went back to the doctor and the mama bear inside of me came out and I refused to leave that office until they ordered an x-ray and could tell me what was wrong. They ordered an x-ray, yet were still unable to tell me what was wrong. However, the nurse practitioner knew something was not right, so they sent us to a pediatric orthopedic specialist here in San Diego. I cannot for the life of me recall the doctor’s name,but it is not an important piece, thankfully.

My husband and I both went to the appointment with our toddler in tow where we were told that Jackson had Legg Calve-Perthes Disease. We stared blankly back at the doctor, “Leg, what?” The doctor told us it was named after the three orthopedic surgeons who discovered the illness. He went on to explain that the blood supply had been cut off to the femoral head (the ball part of the hip) and caused the bone to begin to die. According to Jackson’s x-ray the ball of his hip was flat, not round and was pinching every time he walked. I remember not feeling panic, but feeling somewhat numb. He then went on to tell us that he was taking a leave of absence because he was undergoing heart surgery and would refer us to Dr. Wenger. He assured us Dr. Wenger was the best orthopedic surgeon in the San Diego region. Even though he was out of our HMO network, our insurance would cover him because of the referral. Little did we know what a miracle that moment would turn out to be.

The following Monday I went to the bible study that I lead at the time. One of the ladies brought a friend with her named Linh. At the end of every meeting we take prayer requests. When the time came for me to share I told the ladies the journey we were about to embark upon. I explained to them that our original doctor was taking a leave and had referred us to a Dr. Wenger. Immediately after I said that, Linh spoke up and said, “I work for Dr. Wenger. I am a physician’s assistant in his office.” Here in front of me, days after my son’s diagnosis, was a woman who worked for the doctor we were referred to! I felt like shouting, “Are you kidding me? This is amazing!” I was stunned, yet excited and full of questions. Over the next few months Linh was a huge blessing. She helped us maneuver through this disease and explain the care we were going to receive. Fast forward four months; Jackson was three months past his third birthday and we had our surgery scheduled to help rectify the problem. Dr. Wenger was going to clip the tendon attached to his pelvic area, they would then stretch his legs out into a V position, cast it, then leave it on for 6 weeks. He would not be allowed to have any weight on it for many weeks after that. This would allow the ball to get the needed blood flow and allow the bone to heal. Before this day none of our children had ever had surgery or been hospitalized. We had not even experienced a broken bone. Here we were; two 28 year old parents completely inexperienced in hospital care and dealing with doctors, surgeons and insurance companies; but we felt peace.

The day of the surgery I remember being in the pre-op waiting room when the nurse came in to collect Jackson. She seemed to sweep him up very abruptly and place him on the gurney. I remember panic rising in my throat as I watched him be wheeled down the hallway through the double doors. I wondered, did I hug him or kiss him enough? What if he didn’t wake up from the surgery? The surgery was a short procedure, about one hour. When we were given the OK to go see him in recovery I felt such relief. Especially when I saw his little happy face sucking on his Popsicle. Thankfully he was nice and numb, oblivious to the pain that he would soon experience and that I spoke of earlier. Once we were in his room and all settled with videos and more Popsicles, the drugs began to wear off. The nurse warned me that he would have muscle spasms; this was the tendon getting used to its new position. When his first spasm came just a few hours after getting settled I will never forget that look of sheer terror on my 3 year old’s face. His hazel eyes became huge with surprise, then a look of horror as he cried out in pain. His little body would tense up and he would squeeze my hand so tight it made my heart hurt. The nurse quickly administered the meds that put him at ease. Those spasms would continue for a solid week. We were sent home with strong medications to ease his pain. From beginning to end,  Jackson was a trooper. He loved all the attention from aunts and uncles, neighbors, church friends and grandparents who came to visit and brought him goodies to take his mind off his situation. He loved the wheel chair and getting to go naked half the day since his pants couldn’t be put on very easily; until my crafty mom made him a pair of pants with Velcro to slip over his cast.

I wish I could say that from the moment that our journey started I walked around with constant peace, but I cannot. As I look back though, I am so thankful that I can list for you the positives things that happened. First of all, we met Linh. Linh helped guide us and maneuver a very scary situation and a very quirky doctor. Without her,  I would have said, “There’s no way we can do this!” But she assured us he was amazing and he was! He was concise and knew exactly what to do. I know that because of him our journey was a short 8 months rather than years. A second positive aspect was Jackson’s age; most kids with LCPD are diagnosed at age 9. Jackson was 2. He was in a v-cast for 6 weeks the first time and 4 weeks the second time. I’ve thought many times about how much more difficult it would have been to carry a 9 year old to the bathroom or up the flight of stairs to our second floor apartment. The third reason was the wonderful support of family and friends who brought food, entertainment, prayers and encouragement those first few months of his diagnoses and surgery.

Yes, there were challenges; he peed on his cast many a times which then caused his cast to get wet inside. When he went to get his cast cut off the technician went too deep and cut his little thigh. He still has a scar. The physical therapist that we were referred to did not do the correct exercises with him and was the cause of him having to go back into the V-cast for another 4 weeks. His second casting was in August where the high was 108 degrees. It was not fun and many a days he couldn’t go swimming; he would be so sweaty and itchy he just would cry and I would cry. He wasn’t allowed to run, jump, or play sports for 2 ½ years after his cast came off for the last time. Imagine trying to tell a 3 year old they cannot do any of those things? Once the cast was off he could swim and bike. Both of those exercises were a saving grace, not only in getting his energy burnt off, but they were great therapy that built his muscle and agility back up. He got back to climbing counters and added trees and door frames to the mix.

What I always feel when I think back to that season of our life, is gratefulness. I don‘t know why our son had LCPD. We learned that it may have been genetic and my grandfather may have suffered from it his whole life. I don’t know why our journey was “easy” compared to the families I met in the lobby of the x-ray room telling me their son had had “multiple surgeries, pins and couldn’t play little league for the third year in a row.” My heart always broke for them and I was given a new level of empathy every time I left those wonderful moments of conversation with other moms. What I do know is this; this was our journey and all I can ever be is grateful for the experience and the healing Jackson received. The best thing about all of it was that it is and was the strongest interaction to God’s strength and peace I have yet to experience. I honestly think that this is what Paul is talking about when he said in Romans 5:3-5 NIV “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.”

As you may have read in my previous posts that I have read Brene Brown’s book The Gift of Imperfection. Her work has opened my eyes to a level of vulnerability and authenticity I never knew I could experience. Recently I read Guidepost #3 and she talks about how she discovered that hope is learned. Not only do we have to put one foot in front of the other in moments of struggle and suffering, but I believe we have to look at the signs being given. We need to teach ourselves and our children that in every situation there is hope to be found. To this day I believe the reason I was so hopeful is because I was able to see the pavers placed on my path. This kept me sane, kept our family striving for healing and did not turn into a negative season of asking, “Why me?” but allowed us to move toward hope and peace. I‘m not for one second saying I see good in all things or that every day I smile and say that I enjoy suffering, but remembering what I learned from this experience helps me to put my daily struggles into perspective. Now when I experience financial trouble, parenting strife, marital disunity, or friend drama I stop myself and list the positives. I can tangibly see that God had his hand on our son’s life. He took a scary situation and lined up people and circumstances that allowed us to come out of this disease on the other side. I can now always look at the pavers God places on my path that point towards hope.

Today, my son Jackson is an active 11 year old who is a joy to my husband and I’s life. He’s played little League for 5 years now, climbs every door frame, tree, and jungle gym. He loves Jesus and his mommy, and wants to be just like his daddy.