Dear Juvenile Arthritis… I Really Hate you.

My son enjoying jumping in puddles on a good day

Today was nerve-racking as we had to make a call to my sons rheumatologist. A few days ago my son was awoken at night because he was really sick. Juvenile arthritis reared its ugly head back into our lives, it never really leaves but it likes chaos at my sons expense. I hate arthritis because no child or person deserves such an ugly disease.

I have talked about arthritis in previous blog post but I can never truly get the words out on how much I hate watching this disease hurt my nine-year-old child in vicious ways. When I envision arthritis in my head it would only be described as a glob of goo with malicious smiles smearing across its face. Everything about this disease is horrifying because as a parent, the feeling of not being able to ease their pain is heartbreaking. Telling your child they cannot do certain things because this disease takes away from it is gut wrenching. Watching your child not being able to walk for more than ten minutes, or watching them be unable to do things regular children can do is indescribable.

With each appointment, each version of medication not working, each symptom that can change any day is unfair to the child that lives with it. I’m angry with this disease so angry that sometimes it breaks me as a parent to my brave warrior. The pain is one thing but holding your child because he is depressed because he feels his body failed him make you as a parent feel like your failing. I’m a mother who has an amazing son and I feel like I cannot protect him from the bad in the world because it is his body attacking him. The immune system which is normally marvellous in the jobs it performs failed at the task of being my sons defender. I’m angry; I created this failing body. I grew this body for nine months and the first day I held him I promised to keep him safe. Failing in that promise is beyond my control, but his body and immune system is failing non the less.

Being scared of what’s next is part of the deal when you have a sick kid. Before every appointment even though not religious: I pray for good news. Especially during this difficult time of being in a pandemic. I remember the first time we got our diagnosis I promised my son I would be there for every appointment, so he won’t be scared. Praying and setting mental pleas to the universe it went unheard. I cannot be there for my sons injections. His stepdad will have to take him and I will keep pleading with the universe for him to safe. This disease is scary for everyone, yet somehow my superhero of a son finds a way to stay beautiful.

Three nights ago I was holding him while he threw up and had a bad case of diarrhea. Last week he was in so much pain from walking half a block to the mail box. He said to me last night I hate my body mom it’s not nice to me. Followed with why does my body hate me because I want to love it but it’s hard. I wish there was a magic wand I could wave to take it all away from him. Instead, I will hold him longer and try to be there because he needs me to be strong for him.

2019 Halloween he struggled to walk more than a block. We had to pull him in a wagon because he was not going to miss trick or treating. Halloween is his favourite day.

I will say one thing that I admire out of this whole nasty disease is the children who live with it are so brave and fearless. They are true superheros in the face of adversity. My son and other children living with this disease are stronger than words can describe. I admire his courage and faith that he will kick this diseases butt one day at a time. Even though this disease is taking the piss out of our lives right now I know in my heart my son is the strongest little man and I can wish to be half as brave as he is.

One month after intramuscular injections. He walked Princess Macy to the vet.

Written by Ali Johnson

I asked permission before adding this photo. This was at sick kids before going in for his last procedure. He was telling jokes to the nurses because laughter is the best medicine.

Juvenile Idiopathic Arthritis and Us

My son Travis and I.

I’m slightly overwhelmed with my sons recent diagnosis of Juvenile Idiopathic Arthritis (JIA for short). On Friday we entered yet another doctor’s appointment with a new specialist in Toronto. Our expectations of getting a diagnosis were low from how many times we have seen other doctors in the past. Once the specialist gave my son his diagnosis I was the weird mother who laughed, not my best moment because this was pretty serious. I laughed because after three years hearing multiple doctors saying the ugly c word or surgery or the common we have no idea left me feeling frazzled. Hearing the words JIA had me floored.

This all started when we noticed Travis’s knee swelling to softball size. In the mornings he would limp heavily. His knee became so stiff that he could not bend it. We booked a doctor’s appointment with hopes that we could find out instantly what was causing his discomfort. What we did not know was this was the beginning of a long process of multiple doctors and appointments. Our life became speculation and misunderstandings of what was happening inside my sons body. His life was already complicated with autism and with this issue we threw normal out the window.

Trying to get this diagnosis has taken time out of Travis’s schedule and time with his studies. Being eight years old and autistic these are some of the most important elements in his life. We used to be able to count on these two simple routines to follow. With every doctor’s appointment made to get his diagnosis we had extra tasks to follow. We had to prepare Travis mentally in order to travel and be prepared for what will happen in the appointments. Our parental stress came from booking, missing work, and navigating what each specialist did. Often after these appointments we were left with more questions than answers as to what was going on with my son. This last appointment I did not expect to get the diagnosis that we so desperately wanted.

We have been to so many doctors that this last one was finally the one that clicked well with Travis. No longer having to drive to London, Ontario, for a full day of driving we ended up in Toronto. This was a great relief as I finally had time to think about where we are headed with my sons life. My thoughts pondered to how his quality of life will be affected if it was the great scary word of cancer given to us by the last specialist. Although relieved that it is not in fact cancer, I am floored of hearing JIA. This diagnosis was unexpected. When she said the words Travis has Juvenile Idiopathic Arthritis my mind went blank, and I burst out laughing.

I’m glad the doctor was not judgmental on how terrible I acted at that moment. She gave me a minute to adjust my behaviour accordingly and led with statistics. One in every thousand child has JIA in Canada. This equates to ten thousand Canadian children and teens. What did it mean my son was another part of statistics. Then she said this is a chronic condition he will probably have his entire life. She then stated he will need to go attend Sick Kids Toronto Hospital for treatment. She mentioned steroid injections,
physiotherapy, and extensive blood test. When he gets this done he will have to be under anesthesia, I’m pretty sure my mom brain blanked after this.

I’ve given myself a couple days to understand the meaning of all of this. It’s a great amount to take in as a parent. When you have children the one fear that is commonly held is their quality of life will one day be compromised, and that as a parent you cannot give them the best. Taking the good out of the bad is that we can get him treatment and support Travis fully. I can raise awareness with more that I learn. Join communities with other parents who are dealing with the same disease and build better understanding of JIA. I still have my Travis and it is my duty as his mother to give him the full support and never give up hope for his future.

Written by Ali Johnson