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.

Posting on Social Media Parents of Custody Battles

I have been finding myself angered by people writing hate on their social media during custody battles. Myself, has had problems doing this in the past without understanding the true repercussions of my actions. Stopping my social media hate towards my ex partner and my eldest sons father, puts in context what posting hate about each other affects everyone. It is so simple to say who really cares about the writing and posting of other people. Key problems posting targets is your children, your relationship past and future, your friendships, and your overall mental health.

Every time my ex would come at me for court or custody I would go on my social media and post about how pissed off I was at him. I would write about how much I hate him and I couldn’t believe he would pull that bullshit. Going as far as attacking his now ex-wife on social media because I felt like she was pushing him to argue with me. Looking back on certain posts that popped up on Facebook memories, I am so disgusted with myself. Understandably I was upset with him but to write atrocities as I did, mind blown on reality I would never say what I said about him to my children. If my son read when he was older I could fully understand how upset he would feel. It doesn’t matter how angry you are at your partner unless you want to affect your children mental well-being don’t post hate about your ex spouse or partner.

We as adults cry for people to stop bullying one another. So why as adults lack the ability to take our advice? Relationships and custody are emotionally charged there is not a plausible way to deny it. Every emotion is like a wave during this period for any ending it is a grief period. When kids are involved, posting on social media about their parents is unacceptable because it shows bullying is acceptable. That’s not the intention to bully the other person due to the hurt they have caused: between the lines it is still trying to hurt someone else to feel better about yourself. Due to it being highly public posting about another persons failures is trying to get the mob mentality to dislike the other person. Remember as a child and you couldn’t be friends with the weird kid who had a bunch of rumours on them, by posting hate and only one side of the story that person will become alienated by other people because there are three sides to every story. Who knows if that person posting about their custody battle is telling the full truth or only the truth that makes them look good to others. Victimizing people by one story is easy to do in our society today. All it takes is one social media post and people go crazy without questioning the full spectrum.

All that aside future employers can look up your Facebook and see all the drama that was posted. Was bashing another person worth losing a potential job? This is not worth losing more than what is already lost. I know when I see these posts about parents hating one another and I think to myself these people have no problem throwing other people under the bus to benefit themselves. A future employer would see that as selfish behaviour and shows lack of self-control. Employers want to hire good people capable of behaving like adults. No one wants to hire the playground bully.

Social media is a lawless place anyone can take what you post and turn it around to make it what they need to. Posting has no guarantees others will understand the intention of the poster. Social media has no safety net to stop it from entering into your real life. With everything said on this post the person who is hurt the most from hate on social media is the person who writes the post. Posting negative outlooks about anyone is unacceptable because it affects everyone and yourself. If you need a place to vent about your relationship issues regarding your children find a different outlet than social media. Be the bigger person and move forward without negative repercussions to your life.

Written by Ali Johnson