Butterfly Effect is one of my all-time favourite movies. It is about a guy who earnestly tries to save the life of a girl he likes by changing certain parts of his life through a supernatural way by reading his journal. Sounds great isn’t it? However, every time he tries to alter his past or present, something about his life changes. He becomes crippled, the girl he likes dies in an accident or she ends up with someone else. The message is simple. Life is full of what-ifs. Most of the time, you would think the what-ifs would be better for you or your loved ones but little did you realise that your life is a big masterplan only known to Him. You cannot dwell or wallow in self-pity for what life brings you. The only thing you can do is to move forward, keep finding solutions to your impending so-called problems and keep hopes alive. Most importantly, make the best out of it.
In December 2015, shortly a few days after we were back from Bali, our lovely, active and happy Umar developed rashes all over his body. It started from his legs and spread rapidly up to the face. Not missing any parts of his body. That was when our lives and routines took a drastic turn.
The Blame Game
When something untowardly happened to you, you spend so much energy in the initial part of your trial to find fault in everything you did. Did I give him the wrong food? Why did I not do this or that? Problem is, even if I find out who/what is to blame, what can I do? No one has invented a time machine yet, right?
There will also be those who will keep trying to insinuate that you are indeed at fault. The hardest was when someone asked me twice on separate occasions, “Did you plan this pregnancy?” I retorted curtly with a “Why?” She answered, “Well, you should have planned this pregnancy because Umar needs all your attention now and Ali is still so young.”
I won’t lie. I was fuming mad beyond words. IF I had known that Umar will develop such severe eczema, I will not even think of getting pregnant. Secondly, ALL of these happened at the same time. I found out I was pregnant a few days before heading to Bali. When we came back, Umar was not well. IF I had known, would I want to be pregnant and be facing all of these at the same time? It’s not only physically exhausting. It saps every little ounce of energy I have.
The nights become longer … sometimes non-existent
If daytime was not bad enough trying to manage Umar’s emotions and trying to stop him from clawing his flesh out, we dread the nights the most. His skin and bones was his enemy, especially at night.
Why does the eczema itch more at night?
It’s very simple – the secretion of cortisol which is the body’s own natural anti-inflammatory hormone. Cortisol is at its highest level in the morning and the lowest level at night.
Do you wake up your child in the morning and find them scratching in their sleep? The cortisol has yet to kick in. It hardly seems fair that eczema can be so miserable and itchy for innocent, sweet little sleepers – or non-itchy sleepers.
Daytime itching is decreased by higher levels of Cortisol in the body but also by distractions. Active children are less likely to notice their eczema. There is also another naturally occurring chemical in the body that is highest during the day and helps with calming the itch – histamine. Unfortunately, histamine is lowest at night which increases nighttime itching.
His body cannot regulate temperature well and he is constantly having the chills akin to a person having extreme high fever. While everyone is perspiring buckets, he is feeling chilly all the time. It was difficult for him to be on the same bed with us. At the same time, I weaned him because I thought my breastmilk was the problem. Previously, he had no problem with my breastmilk because I watch my diet like how an eczema patient would. Eating only the right kind of food. However, while trying to find some answers, my search led me to an article pointing out how pregnancy can change a woman’s hormones drastically and causing chemical imbalances in the milk. It was the toughest decision for me because stopping abruptly was never in the pipeline. It was very difficult for him too. He couldn’t understand why he can’t get the comfort he needs at his most difficult time. Even incentives like screen time or new toys did not work. He was devastated every single night.
The first few months were the hardest. He will wake up at 2 am screaming at the top of his lungs and throw a tantrum. He usually calms down close to 5 am after we successfully wipe him down and convinced him to let us apply “wet wrapping” on him. It was so bad that we were visited by the police on one of those mornings because a neighbour had called thinking it was child abuse.
Intially, when he developed his eczema, I still bring him to meet his friends. I wanted him to feel comfortable with his condition. It was fine. No one seemed affected by his condition. All of them played well together so I did not feel a need to prep him in that area. Furthermore, there are kids with harsher skin conditions at our neighbourhood playground and all of them play well together. I guess it stems from the innocence of a child. They are not bothered by anything unless an adult scares them.
Unfortunately, something happened. In one of the gatherings I attend, a kid refused to allow him to play with the rest because of his skin. The exchange that happened still makes me cringe but that is not the point. That night, he started to asking me questions which I have no answers to. “Why is my skin like this Ummi?” “What did I eat?” “Why they don’t want to play with me Ummi?” He was in tears the whole night waking up intermittently asking me the same questions over and over again. Occasionally, I caught him sleep-talking the conversations that took place. Since the episode, he was not comfortable with his skin. He refused to go to our daily playground trips or take a walk to the nearest shops. If he eventually relents to my invites, he will ask to be clothed in long pants and long sleeved tops even when it is scorching hot and humid. I do not deny his request because I want him to get some fresh air. I won’t deny I was worried sick about his emotional well-being. When he cried, I cried. It was so hard not to ask God “Why is this happening to me?”
I was constantly worrying about everything. When Umar got emotional in the day, I was afraid for my younger child. Ali will look at his brother and sometimes I could see fear and confusion in his eyes. While I was trying to manage a 5 year old, I wanted to hug the 2 year old telling him that everything is fine. With little and nearly no sleep and random meals, I kept worrying about this unborn child. I felt guilty that I did not take care of this little being like I did with his brothers. Every appointment with my gynae had me mentally prepared for the worst. However, after the 3rd appointment I realised, that everything is not in my hands. I am not in control of everything. Worrying shouldn’t be in my agenda at all. I just have to try my best. If He wills it to happen, it will happen.
With our disrupted sleeping routine, it was really hard to start the next day feeling happy. I was constantly easily ticked off. Initially, I fight fire with fire. I felt challenged every time he gets emotional and refuse to stop scratching. My mind, body and soul were constantly tired. I could not exercise Respectful Parenting. I felt angry at myself and the situation I was in. The house has to be wiped down everyday and bedsheets need to be washed and changed daily because there were skin flakes everywhere. Bathing and clothing became a challenge. I started to nag constantly at nothing just because I’m tired. I forgot that my children can hear, see and feel. I, indirectly, drained them emotionally too.
No doubt, when I am emotionally affected, the mood in the house changes. I told myself I had to snap out of it. I needed to move on. I eventually left alot of Whatsapp Group chats because I needed to better spend the time I have to fix this problem. I did not want to spend my time trying to keep up with so many chats. It was indeed a great move. I miss my virtual social circle sometimes but it has helped me to focus on my child more than myself.
Umar can detect my emotions very well even when I tried my best to mask it by keeping quiet. He knows when I am faking being happy. He can sense from my body language and the tone of voice. I can’t just pretend to be happy. I needed to be genuinely happy. I need to understand his needs with all my heart. I cannot be a nazi about everything. I had to learn to let go.
I started to reflect alot. No doubt, initially, I missed that boy I once knew. In fact, everybody does. But what past is past. I had to focus on the present and he is still my son regardless. When he seems emotionally affected, I will tell him stories of the Prophets and their friends especially of Sayyidina Umar Al-Khatab and Sayyidina Ali (his and his brother’s namesake). I spent nights reading those stories myself before condensing it to the simplest form possible while retaining the most important lessons for the kids. It definitely has a positive impact on him because when the situation gets tough for him, in between tears, he will ask me to tell him a story of XXX. However, stories will remain as stories without experiences. It is good that he now realised the importance of being kind to everyone regardless. As an adult, it taught me to be mindful of the things I say to a child that might change his perception of certain situations. When he throws a tantrum, I try to put Respectful Parenting back in place. Sometimes, I just walk away and tell him I am here if he is ready to have me to calm him down.
Where sleeping is a concern, I miss those times I cannot sleep because I was tandem feeding them or my little babies refuse to sleep because they had enough for the night. Now, I have to take solace with quick naps in the day to get me by. I look pass the dishes in the sink when the kids take naps in the day because I know night is not a resting time for me anymore. I will either spend my nights calming him down or massaging him while telling him stories or reciting supplications so he can be soothed back to sleep.
I was a nazi when it comes to cleaning up the mess around the house. The first few months after he got eczema, he was only interested in sitting in a corner clawing his skin. During those moments, I wish I had not been a nazi on the mess around the house. I would rather he make a mess than sitting down feeling depressed. Things have certainly been better. Not stellar but getting there, insyaAllah. My heart smiles everytime I see him running around like a free spirit or playing with his toys. Never mind the mess. Most importantly, get the kids clean and fed. It will not be long before they grow up and mess their own room. By then, I will have my own living space empty. Probably, I won’t know what to do with it.
As for this pregnancy, I do get terrible headaches, diarrhoea and vomiting from time to time like any other pregnancies, but otherwise, I can take comfort from the little kicks and movements. At least, one less thing to worry about. Umar even named the baby before we knew the gender. He was pretty determined on the name and surprise, surprise, he got the gender right.
No effort reaped success overnight. I am not going to lie that in between the efforts to cure his eczema and make myself a better parent, there were occasions where I falter. I still do, until today. Sometimes, I still fight fire with fire. But I will try to redeem myself in the next hour or so. I will often apologise to him for my shortcomings and deep down inside me, I just hope he finds a place to forgive me … completely. Even during the hardest moment
It has been six months and although we are still on the road to recovery, my biggest takeaway of it all is never, ever doubt Allah’s mercy, love and grace. He never fails and He is the only place that can provide you with cure and comfort. In this journey, I met remarkable individuals who are professionals in different fields that gave both my husband and I better insight on what we are dealing with. Again, I am sure, this is by no means accidental. These are all possible through his mercy, love and grace.
A dear Ustazah once advised me “Don’t focus on the results. Make consistent efforts.”
Cause all of the stars
Are fading away
Just try not to worry
You’ll see them some day
Take what you need
And be on your way
And stop crying your heart out
-Oasis, Stop Crying Your Heart Out
(One of the soundtrack from Butterfly Effect :))