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