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.

Am I enough? Motherly thoughts.

Tonight I had enough with my children I just wanted them to go to bed. Our life has become somewhat abnormal due to home isolation. Time schedules are basic. In the past, everything was routine down to the minute. Unfortunately right now that has not been able to happen so my children and I are going off loose times. What that has done to my ADHD and my sons autism is allowing us to learn how to handle uncertainty. Especially when it comes to school work. My oldest and I are bulls in the China shop so to speak when it comes to sitting down and focusing on the tasks assigned.

It didn’t hit me until I got the email from my child’s school we are going to be home for a while. I have been alright mentally up to this point but upon reading the letter I had a slight panic attack. I’m not fully sure I’m cut out for this. My husband is working away for four days a week. It is my job to be the main parent, teacher, chef, referee, and many other tasks I had forgotten about because I went to work. Not to long ago I wanted to escape desperately from being a stay at home parent. The panic stems from asking myself constantly am I enough for my kids?

Today was bad the t.v. was on too much, my children had a minimal lunch, I was on my phone to mentally escape and I craved to be alone for just five minutes. At the end of the day we missed bath time and this is part of being a parent. Bathing your kids should be essential, and yet I was too exhausted to give bath tonight. I lacked the focus to play bubble beard, shoot the hose, race the cars and whatever nightly bath games ensue. Last night I forgot to brush their teeth. I am the mom who has caved to forgetting hygiene due to exhaustion.

Supper time has become our spectacle of amusement. Some moms post on social media they are taking this time for table etiquette. I sit at the table and hope my boys can be civil enough to not kill one another. Dinner time is either eww I don’t like inserted food here” or me trying to convince the toddler to sit down long enough to scarf some food without choking. My main goal is keep them alive. I feel guilty because other mothers are posting gourmet meals for their kids. Feeling like the poop smear who fed her kids Kraft Dinner and Salad is not what I wanted for my kids to eat. Last week I prayed I could find the food they would eat while the grocery store stood vacant. It’s a catch 22 feed your kids whole foods with non GMO vegan bullshit or make sure they are fed. Guess which option I’m choosing?

Arts and std called crafts. I have been trying to do crafts every single day with my kids. I plan them out carefully and prep the equipment. If all goes well we have a new project to work on for twenty minutes top. Once all the jazz of glittery gluey hell are over for my children I’m the one who cleans up. Stripping the toddler of his newly designed clothes: yelling please don’t touch that: having my oldest try his best wipe down: it’s ridiculous. The arts and crafts box has become a mess. I organized it last Tuesday only to have it look like a hoarders’ paradise just what I ordered. I purged my house before spring and somehow we have collected more junk being more inside than out. Marie Kondo would be ashamed!

All of that wrapped into a big ball I feel I am not enough for my children. If you asked them how was your day my oldest would tell you his mom started teaching him art. The two-year-old would proudly show the names of shapes he learned from watching Blippi. My oldest would say pizza and movie day are his jam. My two-year old would dance because his mom has taught him some groovy moves. I’m sure if the toddler could fully talk he would tell you all about the massive bubble beards we do make together and that mom made him a squirt gun to shoot the bath monsters. My nine-year old would say he has become the master prodigy player and has achieved new reading levels. Contrast to what I think I am as a mother, my children will tell you otherwise. Rewinding from my text above I am doing what I can do.

I am enough for them.

Written by Ali Johnson

Where Are My Lost Marbles?

In the last two weeks I’ve stayed offline from blogging and doing lives on Garden of Loves Facebook page. I normally take great joy in blogging its great therapy. It tones down the millions of thoughts that annually run through my head. Anybody that lives with anxiety and depression knows that the constant thought process can be exhausting. It never ends with worrying or making up the worst case scenarios possible. On top of this in the last two weeks I have been challenged with motherhood and marriage.

In my life I try to balance myself with my kids, partner, and limited social life in order to stay half charged. By comparison to this is placing a cellphone on charge with five percent battery never fully turning it off. Eventually I slip up and forget to recharge my mental battery until it goes into complete shut off. For the last two weeks I rested myself at five percent with hopes that my system would not fail. However, I was wrong and lesson learned last night I broke down.

It began last week with my partners work troubles. I fully understand my responsibility to emphasize with my partner when he is stressed with our only means of income. The silent contract that is between us throws off the balance ever so slightly. One can only listen to the same problem numerous times before anything else can be handled in life. My partner is married to his job. I have never given him flak for this more so it can be draining to one’s system. As the side chick to his job I have to sneak in other needs: this requires mental skills. When his work becomes “flaky” other things in our life goes downhill, chaos is following close behind.

Following close second to lose your shits town is the communication a parent is required for special needs parenting. I do love the essence of my child. Getting hit with the double whammy of dual special needs leads me to mental and emotional exhaustion. Paying the toll to decipher; doctors appointments, IEP plans, 504, and lastly ignorant school boards, hello ladies and gentleman you have found the mamma bear in desperate need of hibernation. We have IV treatment for my sons juvenile arthritis in just three days, you would think that is sufficient allowance for leave of absence from school. Each phone call getting more repetitive than the last one leaves me looking and feeling like Willem DaFoe during the Boondock Saints scene of his character losing his mind.

This sums it up beautifully.

This line up of events seems like all fun and games until the gross slimy Gastroenteritis decided to cozy up to boys of the home like a bad ex fresh outta prison. It started with the biggest one, went through the toddler, gave me a run for my money, and lastly it made itself well at home in my eldest sons body. This is not my finest hour in motherhood nor the events that gave the last straw this week. Our house was blessed with bodily fluids I truly thought could not come out of a human being. Lacking slumber required for mental longevity was given the boot by the rampant bio hazard living in our home. My mental zen slipped with each night of throw up and poop and unspeakable amounts of laundry. Four nights this went on my partner slept soundly through it all. Thinking that looks could kill I hope my eyes were like laser beams in his subconscious. This week as he slept so peacefully he was a jerk face to me.

My exact stare to my sleeping partner. I may have done the hand action to.

The toddler’s flu brigade was not the end all of missing my marbles. It came last night. My anxiety decided to go into overdrive. Each thought of new and horrible events driving the of mind. Twelve o’clock came and try as I might sleep would not come. I was over tired and could not shut off. I watched the alarm clock creep to one am, and then the small voice of my nine year old says “Mom I pooped”. For the next few hours of the night finally ending at five in the morning could only be described as a shitty night. No literally a shitty night, poozaganza, the merry shits. Never in my life have I cleaned up that volume of fecal matter. My house smelled, my couch got it, my sons bed got it, the wall got it, places unmentionable got it, and I completely lost my marbles. I tried to wake my partner for parent duty. What I can describe as his statement ” do you need a diaper because you can’t handle poo.”

There is a moment in marriage that one will question if this the time to smother your significant other. Other than when I was in labour; he sleepily stated you can take a taxi, have I thought about his instant demise. Lord was with him last night because he lives today. He should say thanks for being so lucky to survive the raging wife who now has been covered in every bodily fluid possible. I’m so grateful he got sleep tonight because at five am the toddler awoke. It was apparently party time for the young human, I cursed whatever universal law that was testing me.

The toddler felt five am to seven am granted the greatest time to practice loving head butts and boogie picks. His wrestling moves greatly improved in the wee hours of the morning. I got up and wrote on my whiteboard ” Do not wake me for anything. It IS MY DAY OFF” I stood by those words today and my partner honoured them. I still took care of my eldest son by setting up his bed in the tub, I feel better now that I took time to charge my batteries. My Willem DaFoe Face wiped clean off my face and I still love everyone in my home.

Written by: Ali Johnson

The Start Of a Good Day

I cleaned up my house today and it was better than sex. That was a bold statement but I mean it. Cleaning up your home after weeks of letting depression and anxiety take over it feels good to start fresh. Letting go of all the tension that built up with every piece of avoidance is refreshing.

I hate cleaning during my bad days. My bad spells with my mental illness contain disorganization and discontent on what needs to be done. The laundry piles in the hamper I will keep washing the same clothes over and over again. I only rinse the dishes enough to appear clean but it’s still not my best effort. What other people call lazy to me it’s the thought process of feeling tired. I feel as if my brain is foggy and doing these chores are exhausting. I know when these spells hit my house is the image of what is going on inside my head.

My anxiety makes it hard to focus on my priorities. I often fight within my thoughts as to why the fracture of reality. To one who does not struggle with anxiety they would say just get it done you will feel better. The thing is even when I try to get motivated the brain fog clouts my enjoyment. The challenge of responsibility feels like somebody tied an anvil to my body and said jump. Part of self care and mental health treatment is to know your limits. The more I tried to just get things done, created tension and rising frustration. I kept hearing my aunts voice saying it’s not clean enough and do it over.

Once her voice takes over in the mental compartment I will clean but then obsession takes over. Nothing is ever clean enough no matter if I scrubbed it ten times over. I then start the process of self-destruction. I count my fingers, I need six things to tap, and I will not eat food. Once this process starts; I cannot take enough showers to get rid of my dirty body. I will pick at my skin in stress and find flaws everywhere, nothing is clean enough. These are the lowest of low points in dealing with my anxiety.

Today I felt motivated I cleaned up my home the way I wanted. I felt good enough to eat and control the urge to binge and starve. Tonight I will practice yoga and let it all go again. Cleaning up my home is a good start to bring peace and balance until next time. I have no idea when depression and anxiety will hit again. They stay hidden in the corners of my mind tugging at their release. As much as I know the sadness will take over again, today I will enjoy this small victory.

Written by Ali Johnson