In this section, I will be discussing the emotions I felt as a parent and those we watched our son, Peter face throughout this experience. I will be candid with you. It was the hardest thing we’ve ever done, and it’s still going on. But it gets better. Know that what you’re feeling is normal and that you are not alone. 

 

I will start with parents’ emotions first, as we often barrel full steam ahead to our children’s care. It is important to acknowledge what you’re feeling as a parent in order to feel your best in this situation, and thus, help your child the best you can.

I like to think that I am a strong person. I stand up for my loved ones and values. I do what it takes to get the job done. I’ve climbed the corporate ladder. I survived medical issues and bullying as a kid due to Growth Hormone Deficiency Syndrome. My parents are divorced. I’ve seen rejection and pain up close. But when 2023 hit me with my son’s diagnosis, I had never been barraged with so many emotions or feelings of this intensity.

 

It took time for me to realize that what I was actually feeling was primarily grief. 

Grief is an odd and tricky emotion, or rather, series of emotions. I was shocked. I was confused. I was stressed out. I felt as though I were oscillating between doing “ok” with everything and crushed with despair. I never knew what kind of day I would have or how I would feel in response to any particular situation. My emotions were unpredictable and did not seem to diminish as quickly as a simple anger or sadness would. I was always overwhelmed. Weeks went by and I still wavered in emotional swamplands.

Talking to my mother, she told me that I was describing her experience with grief. And she was right. I was grieving. I was grieving what my son’s diagnosis meant for my family and my child. I was grieving for my son's future. I was grieving my family’s aspirations for the upcoming years and all our plans thus far. I was grieving the life I had envisioned for us in my immediate future.

It’s easy to comfort a parent and dissuade them from guilt when you hear their situation. But when it is your own child, it is hard to take that logic and apply it to yourself. I felt tremendous guilt for Peter having Perthes disease as I knew it correlated in some way, shape or form to his Growth Hormone Deficiency which I too had as a child. In all likelihood, Peter’s situation is inherited, or at least exacerbated, by me unintentionally. I felt guilty about it. 

 

I also felt guilty that I didn’t put my foot down with Peter’s pediatrician sooner as well. If your child has a perthes diagnosis, it is extremely likely that your doctor misdiagnosed the symptoms as “growing pains.” I asked Peter’s doctor at least five separate times about his complaints of single-leg pain and small stature but was brushed off each and every time until I demanded exploration upon appearance of a limp. I felt terribly guilty–and pissed off–when his diagnosis proved that my gut instinct was correct and it took a year to intervene. 

 

I understand that I should not feel guilt for these things. I did not, nor would ever, inflict something of this nature to my child. And this beautiful creature wouldn’t even exist without our love, dedication and DNA. I know this. You know this. But knowing my body passed on the conditions that fostered this misfortune gave me guilt. 

 

I also understand that I placed my trust in a doctor who looked at the situation and his practice experience and thought he was correct in his assessment. “It’s usually a horse, not a zebra.” (Perthes is 1 in 12,000 after all.) While I remain angry that these frequent questions were brushed aside, I still did right by my child. We didn’t know what we didn’t know and I got him the care he needed when we learned he needed it. But, still I felt guilt. 

 

And then, believe it or not, I felt guilt for feeling bad about our situation and having a hard time. Time and again I would look at my situation and think–this is not that bad! My son is going to have a normal life. This sucks now but we will be Ok. “It’s not cancer!” And upon realizing how seemingly not-a-big deal his activity restrictions were (at this stage of my emotional experience, Peter wasn’t expected to need more than activity restrictions during his treatment.), I felt bad for feeling bad. 

 

Ridiculous, though understandable. 

You may think you know how you’re doing during your emotional journey, but if you’re anything like me, you will be wrong most of the time. I was surprised by how often I shocked myself in my reaction to “handling” how I was feeling. 

 

For example, two months into Peter’s original diagnosis, his doctor had him on activity restriction. Peter’s only real outlet physically was swimming. So after a full day of working at the office, Sam or I would take Peter 25 minutes one way from school to a rec center where he could swim. We would swim with him in the water (at 5 he couldn’t swim solo yet). I knew he lived for this time but it was exhausting for me. To change out of my work clothes into a swimming suit and then submerge my overdried skin into the heavily chlorinated pool where I treaded water and must play with my child for 2-3 hours. It was exhausting. And in a few weeks of this routine, my nails and skin started to show the punishing effects of hour upon hour in highly chemicalled water. My hair became brittle and coarse.

 

Did that really matter? No. The only person who cared how my hair looked was me. But it added insult to injury. And yet another thing to worry about during my jam packed, zero me-time days. 

 

Now, Peter’s favorite pool was a heated “wellness” pool. It was shallow in 3 of the 4 sides and mostly visited by the elderly and young swimmers. One day I decided to try to keep my hair dry during our swim in this pool, to protect my hair and prevent me the painstaking task of washing out the chlorine later. I knew it would get a little wet, but I figured I could keep it mostly dry. I didn’t yet own a swim cap. 

 

On this day, an older child, probably 11 or 12, continually cannon balled into the pool. His father on the sidelines noticed me shielding my hair and told his child to avoid me, which I appreciated. Peter and I continually moved away from this boy as he obliviously played and splashed around. However, he seemed to always beeline toward us. After half an hour of avoiding him, we moved all the way to the staircase section of the pool where this little boy couldn’t cannonball due to its depth. Despite working around this child, he came and cannonballed over the railing and showered me in water. 

 

I screamed. “What the heck?! My child has special needs and all I want is to keep my hair dry!” The little boy started and began apologizing profusely. I took Peter to a different area of the pool fuming and wondering why on Earth I shared the “special needs” line with a kid who was just playing. I turned around a few minutes later to see that boy crying on the side of the pool with his father comforting him. I sighed heavily, got out of the pool and I began approaching the father and son. As I began speaking to the father of the boy, I started openly sobbing. This stranger opens his arms, embraces me and says, “I’m sorry this is happening to your family.” 

 

It was one of the strangest moments of life. My breakdown. The unexpected nature of it. Who triggered it. And the response of a stranger. I then returned to the pool where Peter asked if I made a new friend. I said yes, aborted my mission of dry hair and plunged myself underwater so I could continue to openly sob without my son seeing. As complicated as my emotions were, I had no intention of my son learning he was somehow responsible for them.

Well-Intentioned Friends & Families

It Gets Better

At this point in our journey (May, 2024), we’re a little over a year from Peter’s diagnosis. He’s been in a cast/brace for about a year. While dealing with this has been the most emotionally challenging experience of my life, I will tell you: it gets better. It will become more of an inconvenience than the heart wrenching, guilt-soaked worry that has plagued you early in this journey. You’ll get through it. It will suck, but you will get through it. 

Anger

Peter is angry. I don’t blame him. And likely, your child will be too. It’s entirely understandable. Just imagine, all your peers are literally running circles around you while you’re told to sit and sit it out. It blows. When transitioning into the brace from the cast, we’ve noticed him getting angrier. He was in a cast for six weeks, and is predicted to be in the brace for over a year. For six months he was in the brace for 20 hours and out of it for four: out one hour in the morning when getting ready for school and then out three hours from after school to bedtime. After that taste of freedom, he’d be much more likely to fight us in putting his brace back on. In response to any outbursts we’d say something along this line, “You’re right, this isn’t fair. It stinks! Really bad. We hate it too.” We try to acknowledge his feelings while sticking to the doctors’ orders. It’s hard. 

"Other"

Something else Peter will sometimes mention is how he is different. In preparation for his casting, we got lots of children’s books showing kids in wheelchairs and illustrating the beauty of differences. However, no amount of preparation can actually prepare you for people staring at your kid. 

 

I take Peter out and about like I would if he were any other kid, and no matter where you go people will look at him with curiosity. Kids are better. They look and go about their business. Adults will stare for longer and sometimes overtly ask insensitive things. Elderly people can become very confused and point. While we just ignore it or politely answer questions, Peter knows very well that he is different. He is in a wheelchair and a leg “contraption” as some call it. 

 

We treat him like any other kid, we don’t baby him. We don’t give him everything he wants because we feel bad. We try to raise him as if he didn’t have these limitations. And on the whole, he acts like he doesn’t have Perthes in how he engages with the world. But now and then he’ll say something that makes me feel like the wind was kicked out of me, like “I’m not as good because of my Perthes.” or “I’m ugly inside… I have Perthes.” or “If I had done _____ would I not have perthes?” 

 

He usually saves this kind of talk for me. Perhaps kids are more vulnerable with Mom, but when he says something like that I try not to give a visual reaction though I’m crumpled inside at the thought of him thinking such an awful thing. I go “Of course not. Something must feel really bad inside to say something like that.” I then ask if he has questions about the disease or explain the law of odds to my six year old.

Ever Changing

At the time I’ve written this, Peter and his feelings have evolved over the months. He will go through periods where he’s angrier about his situation; then he’ll mellow out about it for a few weeks. I’m not sure if he’ll become more or less resentful and angry as he starts to spend less time in his brace or gratitude for the time out of it. We’ll just have to wait and see.