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

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