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

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

Summer Holidays & Motherhood

I need summer holidays to come to a halt. I have had it with my children and the summer. Between being a personal referee and a chef with little to no thanks, I am done. If I hear one more complaint I will personally buy the tiniest violin and play it at my tiny crotch goblins expense. I will make it my mission to act as immature as possible to show them the idiocracy that is our summer.

The beginning of summer I was prepared to be the best mom I can. I had plans to do something every day. Educational activities out the butt were planned. Healthy food for the whole summer was on the menu. We were going to do arts and crafts for god’s sake. I was going to laugh more and create the best memories for my children. Truly I had made a solid plan for this summer to go well. My children on the other hand decided we don’t do that here.

Plans to do something every day: well lets add whining and crying to almost every place we attend. I have never in my life seen two kids behave so barbaric publicly, I am embarrassed. They are not raised to be like this and I promise discipline was delivered. More challenging is why they were angels with the grandparents. I have no idea why the universe decided to bless my husband and me with feral boys. The angry mom you hear about shouting at her kids that was me. I’m pretty sure my downstairs neighbours think I’m nuts. I am the crazy white lady who yelled like I was in a metal concert with some sick throat signing. Mastering the art of using my Batman voice it scares little children. I put Kate Middleton mom face to shame. The face that says I mean business and I will not take any prisoners.

Educational activities: what are those? Non existent like dinosaurs. Despite the best efforts to match Pinterest mommies, I render my resignation. Cute little hand print paintings more like brown goo and a toddler eating paint. The blue crayons taste the best according to the coloured poo being produced. Arts and crafts have become impossible with the seven-year age difference. One wants to do crafts that require in depth instructions while the other needs arts and crafts to be uncontrollably messy. My eldest son who has autism needs crafts that require nothing sticky, smelly, or soapy. My toddler loves all three of those categories and is the king of messy. I give up it is not worth the battle ensuing in my home resulting in world war three. I tried my best, I think Pinterest moms are full of poo. They probably made the crafts while their crotch goblins slept.

I made a list about healthy food we would experiment with. Reading every article about autism friendly meals, toddler friendly meals, meals for carpenters was originally a great idea. Light bulbs going off in my mind I laid out plans to feed the boys of my home with great intention. We would become a healthy family. No junk food or sugars, and we would try more vegetarian friendly meals. I promised myself to cook wholesome meals no more going out to eat. My Amazon account became littered with bento boxes galore. Tupperware heaven and best laid plans aside all of it did not work out. It lasted two weeks at the beginning of the summer. After exhausting days with the boys I caved. We travelled on weekends to stay busy somehow we never packed enough to keep our children fed. My eldest son didn’t like how apples tasted, how bananas felt, and hummus looked like barf. The youngest is a phenomenal eater but his name should be Crumbs R Us. Our vehicle this summer became shameful. We caved for minutes of sanity, and we got junk food. My husband had no follow through with not getting food from the gas station because of forgotten lunch. My expectations of boys listening to be healthier has been lowered dramatically. Although we did not eat all junk all summer, for the most part we did eat home cooked meals. I tried new recipes and became aware of the contents in our food. The Guinea pigs that are my boys have claimed that I have seventy-eight percent accuracy in pleasing them. That states I did something right this summer.

I really did want to be that great mom everyone raves about in the PTA meetings. Missing the target greatly was a misfire this summer. I am envious of the perfect moms I see on social media. It’s not all bad though we did laugh, we walked everywhere, and we had daily dance parties. Even though screen time was “slightly” uncontrollable, we did read daily. I counted our reading logs we read eighty books this summer. Not quite one hundred like I planned but close. My eldest son obtained a library card and has steadily been reading novels. My toddler was outside and exploring the world at his pace enjoying the Earth as it should be. I’m exhausted from the summer and need school to start. Kudos to the teachers that make it from September to August with my tiny humans you are the MVP’s. I sit here wondering is this parenting in a nutshell? I am wondering is parenting jumping off a cliff with tiny humans and still making it to the bottom with no chute. Feeling eager to have the first day back to school and first day to daycare happen I am sad that I feel summer was a loss. My eldest son tonight told me that he had the best summer. I wonder what I’m missing from a parenting point of view to see it as a loss when he sees it as wonderful.

Written by Ali Johnson

Promise, They Will Be Enough

[Will’s father came back into town, and then lied to Will about being around more and left. Phillip is trying to comfort him]

Will: Hey, you no what, you ain’t got to do nothing, Uncle Phil. You know, ain’t like I’m still five years old, you know? Ain’t like I’m gonna be sitting every night asking my mom ‘when’s daddy coming home?’ You know? Who needs him? Hey, he wasn’t there to teach me how to shoot my first basket, but I learned it, didn’t I? And I got pretty damn good at it too, didn’t I, Uncle Phil?

Phillip Banks: Yeah, you did.

Will: Got to do my first date without him, right? I learned how to ride, I learned how to shave, I learned how to fight without him. I had *fourteen* great birthdays without him; he never even sent me a damn card. The hell with him!

[pause]

Will: I didn’t need him then, I won’t need him now.

Phillip Banks: Will…

Will: No, you know what, Uncle Phil? I’m gonna get through college without him, I’m gonna get a great job without him, I’m gonna marry me a beautiful honey and I’m having a whole bunch of kids. I’m gonna be a better father than he ever was. And I sure as hell don’t need him for that, ’cause there ain’t a damn thing he can teach me about how to love my kids!

[long pause; he’s crying]

Will: How come he don’t want me, man?

Scene from Fresh Prince of Belair.

I remember watching the scene from Fresh Prince of Belair for the first time and felt so connected to what he was saying. I too had absent parents who treated me out of convenience instead of want. Lonely is the best way I can describe my feelings towards the missing people that were supposed to step up and do the right thing. Some people say absence makes the heart grow fonder, but when your parent is negligent it causes a certain degree of pain.

Every time my parents would choose to jump in and out of my life a rift grew. I questioned why they chose that time to step up when they wanted no part in anything else going on. One of my battles as a child was dealing with questions of why I was not good enough for them. I was smart, imaginative, and loved to learn. The older I got I started to feel guilty for being a burden to them. I always felt that I was the reason my mom was slightly crazy and my dad didn’t want me because I made my mother nuts. It didn’t matter how much I achieved I was never good enough for them.

Overtime as their absent parenting grew I felt raw anger towards them. Other children would state how great their parents were. How they loved them unconditionally. The one time that I rejected seeing my father I was guilt tripped by family members. They stated that if I didn’t love my dad I should say it directly. I was torn into pieces that day instead of being told my emotions are validated. Thirteen year old me made a promise that day that if I ever have children; I would love them until the day I take my last breath, and be better than what they were one hundred percent.

Two boys later I have kept my promise. I, no longer keep contact with my mother by ensuring she has no access to abuse my children. My promise is simple yet it allows my children to be loved. Unlike my mother I will allow my children to make mistakes and not treat them as a disappointment. I will make sure they have food in their bellies before myself. They will always have a safe space to live in and someone to care about their needs. My last promise is to tell them I love them with each passing day. To hold them when they are scared and cheer them on when they do great things.

I am not a perfect parent by any means. My parents made a choice to walk away from me, what I learned is that I will be better. I did learn something from them and that is my children are first before me. My love for them shows them they are enough. They will not go through life wondering how they failed me. Love and trust does not come easy for me, but my children will never have to struggle with feeling alone and unheard. I may have been unwanted but I will always want my boys.

Written by: Ali Johnson

30 weeks with my son Maximus.

myself, Travis, and Max