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.

Universal Time Out

I think Covid-19 was earths version of a mother putting her child in time out. In my life it has been a heavy time out to rethink my life plan and how I can live better. For others, I think it the Universes way of saying I’ve had enough crap now go to your room and stop being a dick.

Covid-19 in itself is terrible and scary to deal with. I realized people on the planet have not taken the earth or the economy series and that we are failing to act in an emergency. Seeing how others handled panic and how fast the economy came down reminds me how feeble people truly are. I also seen a side of people that I’m ashamed of. Selfishness of human nature is unacceptable. Facing disaster people should put aside differences and do the right thing. Care for one another, support one another, understand one another, if we cannot do this as a whole society then we are in for a nasty future. Something has to change, and it has to change fast.

Our mother earth needed to breathe and justly, so I think people need to stop being the rude aunt at holidays. Everything in the world has become disposable, fast paced, throw away with no consideration for anything else. We as a society have become disposable. Our Earth is surrounded in toxic thought and production. We have become quality not quality. Humans are the company who produces greed and bad coworkers. I honestly think the world needed space to heal the wounds that we have left. A lesson in reminding people that we are privileged to live on the fragile earth beneath our feet. We are gifted with intelligence to be better to create a better life. Instead, we used our intelligence to be destructive to the gracious host.

Wordly quarantines can give time for reflection on our actions towards others and slow down. I keep hearing when things go back to normal. Can we really just go back to normal and ignore the big message being displayed right before our eyes? There is a bigger picture being held up it is saying change the thought and frequency we are going at. The smallest lesson being whispered to us is stand united and change. We need to become a society that is better than the past. It’s almost as if we are headed to repeat the past but with stronger weapons of destruction. It’s not the atomic bomb it’s the destruction of society and the fragility of human ego. In the words of Dr Zuess, The Lorax, “Unless someone like you cares an awful lot, nothing is going to get better. It’s not”. This too applies to everyone coming together and caring about the world we so happily destroy.

The biggest factors in our destruction right now is greed, power, and indifference. A calling for peace and unity could change the narrative of the world. Calling for a change of government, a change of life, and a change of treatment for a collective whole would allow the world to advance in a way of the future. Looking at the novel perspective we are headed to the future depicted in the story “Harrison Bergeron, by Kurt Vonnegut.” We will have no freedoms, no will, and no place to call our home because we have chosen to destroy it with petty human nature.

It’s time to listen and it’s time to change. Take time to breathe with universe and listen to the fine tune of what the future should be. Be one with our Mother Earth and wake up the unity we are capable of. Take the breath and take the trust fall that we need to grow and give Mother Earth her space.

Written by Ali Johnson

Unless someone like you cares a whole awful lot, nothing … | Flickr
Dr Zuess
The Lorax

Parenting a sick child (Parenting)

What is parenting a sick child? I can say for sure it’s not something I would wish on my worst enemy. My eldest child has two illnesses; one is autism, the other Juvenile Arthritis. I am a selfish parent because sometimes being the parent of a sick kid is exhausting. With each diagnosis and doctors appointments with never good news, sometimes I imagine running away and finally breaking down. People don’t talk about what it’s like to be a parent of a sick kid because the feeling attached to it is judged heavily.

I’m the mom who breaks down in my car before work after appointments. I head in with a smile and try to make others day manageable. Convincing me to get out of the car and put on the brave face is ridiculous. No one on the outside is allowed to see the drowning sorrows of motherhood. I don’t want anyone to know that I feel guilt because my child is sick. It was my genetics that gave him the issues that he has. I’m selfish because I want to hate every strand of my genetic code. Placing blame on something feels good to do. I hate that this happened to my child. It curls my stomach every time a new diagnosis or treatment needs to happen. I’m selfish because I just want him to live a normal life.

Recently strangers have judged me for my sons treatments. I have received stares from people unknown, parents like myself silently shaming what they do not understand. It’s sickening to have society post awareness yet remain ignorant as to why certain treatments are necessary for my child quality of life. I want to yell at the judgmental ass holes; I want them to feel the pain and hurt I feel, I want them to understand that I am a parent barely holding my head above water, and they are the people dunking it under. It’s not their fault this happened. A part of me wants to shake them, the other part of me just wants to them see my child and not his disabilities. In the grocery store as the person states my child is too old to sit in the cart, I imagine her legs being so sore she can’t walk. What would life be like for her then? I know it sounds sick to say out loud. The feelings are there and denying they exist causes feelings of rage and loneliness.

Loneliness, fear, and feeling of rage are taboo subjects among parents of sick kids. I hate being called brave because it’s my duty to make sure my child will live a good life. I signed up for it since the day he was born. Don’t place me on a pedestal because I don’t deserve it. I cringe hard when people say thoughts and prayers or I’m so sorry. Don’t be sorry for me, don’t be sorry for my child. I wish people would ask for more information and actually support research. Another thing stop giving information read off Google and think that it’s helping. Half the articles produced lack scientific research and data to make sense of the illness my child has. I loathe people who think that one persons illness is the same as Dick, Jane, and Sally. No illness can be the same its near impossible. I wish people would understand how frustrating the misinformation is. After being overloaded from appointments to have someone tell you that doctors knowledge is wrong is overwhelming. It adds to the guilt and shame parents of sick kids feel.

Despite crying in my car, laughing nervously in appointments, screaming at total strangers this is parenting with sick kids. When the parent states they need a break from this it means that they feel overwhelmed and scared. It doesn’t mean they want to up and abandon their sick child. The parent of a sick child would do anything to not have their child anymore. Expecting parents of sick children to not break down is unreasonable. On the outside everything seems fine because that’s the way we cope with the pain of our children. Having to hide these thoughts and feelings are detrimental to the mental health of the caregiver. Society holds high judgments as to what parents of sick children should be like. Walking in the shoes of the high and mighty is damn near impossible to not create the persona of someone falsely holding it together. Its being pushed off a cliff into oblivion, no life ring in sight. It’s not as simple as cry it out and get back on the horse so to speak.

Everything in that parents and children life changes from the first diagnosis. Home, work, school and mental self-worth all change. Sometimes the struggle of a parent is to manage the illness but manage normalcy without missing a heartbeat. The caregiver of a sick child often loses their identities as they try to navigate the waters of illness. Looking from the outside within my heart is with the other parents or caregivers who feel alone or at the moment sitting in a quiet place crying. It’s not your fault and your not alone in feeling grief and anger. The world just misunderstands selfish feelings but people trying to hold it together one diagnosis at a time they are not selfish just lost.

Written by Ali Johnson

Reflections (Inner Meditations- Self Reflection)

I am human: I will make mistakes in my life. I am a woman: I will be looked down on society because of the actions I do. Yet, I am different because I choose to break down my walls of what is expected of me and what people dictate as “normal behaviour”.

I could follow the rules and mould myself into someone I’m not. Dress this way, speak this way, be this pretty girl. Believe everything the media tells you. Follow the direction of elders unquestionably as they have done before them. Become the senseless robot with reckless abandon. Here is my question: why? Why must I be someone I’m not? In my heart I know who I want to be. The universe throws me mistakes, so I can learn to be the person I dream to be. It doesn’t matter to me to be the expectation thought out by others. My dreams tell me what my heart cannot. In my dream state they guide me in my journey of self discovery. Ignoring my dreams and telling my mind to be detrimental to self growth and self-love.

Am I happy? Happy in what sense should I be? Generalizing how others should be happy is opposite of universal law. Instead of asking for happiness I believe in inner peace. Can the world give me peace within and if not how to make the soul restful. If the soul is tired the mind will follow, and if the soul and mind are tired the body of oneself is sure to break down in survival mode. Forgive what was, and accept the peace that everyone tries to find. The universe wants senses to guide others into inner knowledge to fuel the bodily system.

Starvation of the soul is common in today’s nature. Easy as it is to disconnect with the Earths vibes and inner strength. Humans themselves easily disconnect by ignoring the senses inner divide. Connection allows the soul to recharge and allow space for more knowledge within it. Knowledge and inner peace is the battery charging the soul forward into future holds of personal growth. When the battery dies without vibrant energy so does the physical body as it starved its way from the universe without understanding of greater self.

Ask questions that are needed to grow the tree and build roots. Humans are like trees. We have layers for every year we grow. With nutrients of life we do not thrive well. Much like the earth the more invention of tools can block the natural way. Water, oh sweet water is the connecting life path for many. Water is life; some is still, some flows, some is turbulent, it can make life or it can take it. Knowledge and water flow into our lives and grow the path that we so elegantly ignore. The universe is a vast forest that needs connections and energy provided by lifes battery.

Using the senses and allowing peace to entire life allows a new vision to be seen. More people need to feeling the true energy of the Universe we would stop being self-destructing. This means seeing the true world not the world created by power hungry (soul hungry) people, we would be able to connect again and find inner peace within ourselves and start building a healthier forest to thrive inside. Lives and souls are bio domes of special characteristics beyond human understanding. Animals and nature are far more in tuned to the universes vibrations that we should stop and try to learn how to meet that standard. See, taste, smell, touch… these senses are small in the grand scale of connection. Feeding our souls with knowledge and peace will allow more senses to open.

Greed, power, hate, is the destruction of better universal vibrations. One must replace these soon, or we will no longer be able to grow for a better understanding of what could be. Connect, peace, and inner harmony will allow for these changes and better understanding of why life exists. Break the mould of today’s beliefs and open the mind for more knowelege.

Written by Ali Johnson