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

Addiction (Battles with Addiction)

My best friend connected from the soul called me yesterday. A call I expected because like her I was thinking of the same feelings. The universe always has a way of making us feel connected to one another and knows when we need someone. What I did not expect from the call was talking about our addictions and how easily we slipped last week. The universe knew that we needed someone to hear why and get us back to sobriety.

Yes I admit last weekend I threw away nine good years of sobriety. Why? I don’t have the answers right now. Addiction lacks a sense of humour, it prides itself on vulnerability. I cannot make excuses to my slide of temporary loss of control as much as I want to right now. I let myself lose control and allow the need for my addictions to fill my loss of feelings. It started with making the wrong connections. I sat on a friends floor after smoking a joint finally feeling quiet. I accepted flirting from another person. My phone call yesterday put to terms that I will always want drugs and inappropriate sexual relationships when I think i’m over my addiction.

Addiction doesn’t care if you are travelling to recovery. It waits for the right moment to hook its user back in. The addict could finally be correct in life and one false moment of hopelessness is all addiction needs. Addiction is not just drugs. Addiction is the need to fill the void in one’s life to feel something missing. Addictions are false hope in feeling good for a moment instead of facing the demon in front. It doesn’t care; its victims could be young, old, ugly, pretty, rich, poor, addiction wants everyone and everything in your life to be consumed. Its appetite for inner war is unsalable. It needs to feed on grief and desperation to stay alive. Addiction is the parasite of life.

Addiction was not my choice on how I want to grow in my life. I grew up with alcoholism and drugs. The addiction to sexual intimacy without love came later in my life to cope with lack of love. I used to use sex to feel something but nothing at all. With most addictions one does it for a small moment of feeling good, but addiction doesn’t feel good. The lengths I go when I let my addiction run rampant is horrifying. It doesn’t hurt me as much as it hurts others. (Addictions) loves to feed off the pain of others as collateral damage. It hurts families, it loves hurting the ones you love the most. Addiction is personal hell that will drag everyone you know and love with it. Being an addict makes room for lies and deceit. What addiction loves the most: having more addicts in the wake recruited by the newest addition of the hooked and able.

At least it’s not hard drugs I used to say. It makes no difference I, Ali Johnson, am an addict. I am one week sober.

Written by Ali Johnson

I Could Pick Myself Apart (Emotional Breakdowns)

In the last two weeks of starting work again after being a stay at home mom for two years I felt like I failed my children. On Thursday night I found myself crying fountains, screaming at my partner on the phone, kids in tow, after feeding them McDonalds. I sat in my red Buick Century clutching the steering wheel my kids watching their mother break down. I had gotten off night shift, my sons babysitter had to cancel, running on no sleep for twenty-four hours… complete dumpster fire of emotion. Officially last Thursday ranked ten out of ten emotional and physical exhaustion of motherhood and marriage.

If someone was on the outside watching me I’m sure they said I was crazy, check me into the mental institution and call it a day. I had no self-control left in the evening. I wanted to be a good mom and wife and do it all. My mother-in-law kept saying she could watch the kids while I slept. My husband and I have been on the outs since going back. I was loading my plate with all the duties mother and wife related without taking time to breathe. My entire situation was a boiling pot waiting to spill over as I kept adding more life ingredients. Is that not what is expected of women today; to balance everything and give it all, with little to no complaints attached?

I’m here to say that should not be the expectation for women today. That should not be the expectation for anyone. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Having time to look at the situation my children had food in their bellies that night. Did I spend the last twenty dollars in my bank, yes I did. They were fed and according to my eldest son he really wanted to go and have time with his mom. I have been working hard the last two weeks at my new job. My son just wanted some mom time because he missed the time we used to have. He didn’t care that it was fast food he was happy that I gave him my attention and time to listen to him. I got to hear all the wonderful things going on at school. Learning about his friends, and what he likes. He didn’t care his mom was in sweatpants or that I felt like he deserved a better mom. Both of my boys ate and had fun just having their mom love them.

In the car I had a massive fight on the phone with my husband. We don’t often fight, and we never fight in front of the kids. On Thursday I was to emotionally exhausted to follow those rules. My husband is a great guy and my best friend. For the last month he and I stopped working as a team that we are. He was tired from work, I was tired from work, we both had been co-parenting just not in sync with one another. That morning I had sent a mean text message belittling him as a parent and a partner. My irritations from work and my doubts as a wife and mother came out and I fully admit I used my husband as a verbal punching bag. Sending that text message was awful, I hurt him because I was hurting. Having that fight oddly brought us together. Even though our children saw it they also get to see their parents apologize to one another, and that shows them it’s ok to have an argument and how to work it out as a team. This argument allowed my husband and I to say what we thought and create a solution for a better future. We both had childhoods where adults fought but never found a way to move forward. Silver linings and all we just have to keep moving and understand we are still learning to love one another by forgiving and being compassionate when we are hurt.

My children saw me cry. I bawled my eyes out and had the best cry. Crying can be healthy. I am the person that hides in the bathroom so no one can see me cry. I have done this since childhood because I was never taught what emotions I could have. Only learning anger and silence and emotions like I had on Thursday were punishable. Growing up in emotionally abusive environments are hard to manage emotions that are out of control. I don’t handle emotional stress in healthy ways. I wait until my breaking point to deal with them. My children deserve different futures from me. Seeing their mom cry showed them it’s ok to feel emotions. It’s ok for them to be upset and express their frustrations. After calming down I explained to my children that mom was upset but it’s not their faults. I also apologized for their mom losing control and I loved them. Explaining to my children that sometimes mom feels upset and needs to find better ways of coping than to yell and scream. It is not their job to solve my problems. It is however my job to teach them it’s sometimes ok to not be ok. I explained to my children they didn’t do anything wrong and held them tightly. When we got home I took some time to listen even harder to their needs because tiny humans need love the most, and I need to break the cycle of the past.

With everything happening I’m here to say my emotional breakdown happened. It happens to so many people in today’s society. People are expected to pile a thousand of things on their plates without complaint. Despite that moment in life I feel like to many people try to do it all and then feel guilty when they hit the breaking point. I broke down, and at first I was so ashamed of the things I said and the actions I did. My emotions and exhaustion from trying to do everything without help got out of control. The best thing out of this situation is looking back at why it needed to happen. I’m not happy it took this point of breaking to be heard, but to know that I’m still human and I still have lots to learn about life.

Written by Ali Johnson