A beautiful breath

Her first beautiful breath was taken at 29 weeks gestation. She cried and when the obstetrician held her closer for me to see her, she locked her eyes with mine. She couldn’t breathe air freely at the time; the breathing machines had begun their relay race with her lungs. The oscillator machine was up first; it took her breaths for her. Next, the ventilator machine took over and taught her steadily how to breathe. When she showed the ventilator she could do it herself, the SiPAP and CPAP machines took over. Nasal Cannula took over for a while thereafter before the breathing relay race started all over again. There’s been so many times when thinking of her first breath, 8 years later, that her last breath was just an exhale away. Alhamdulillah (All Praise is due to God) she held on. Her lungs are guarded beyond the machines, Allahu Akbar (God is the Greatest).

 

Since the start of Covid, the world has endured even more difficulty. So many people lost loved ones and sources of income. When hearing about Covid, we froze; we already lived a life as isolated as we could for the safety of our Fighter-Girl, but having Covid around meant we had to be even more cautiously careful. Not everyone understood our need for isolation; our need to protect our child. It was so easy for comments to fly at us that we were being paranoid and too careful.  They proceeded to fire at us that we didn’t trust our Maker, what must be, must be. So many people complained of isolation of a few days, perhaps a few months, how many could endure it for a few years? What if you had a good enough reason?  We were isolating before Covid – Zahraa’s lungs got sick easily and even after her hospital stays she would continue recovery for 3 weeks at home each time she got sick. So we were icy isolated not just from viruses and bacteria but from viral thoughts of others too.  It hurt to see her struggle to breathe. 

 

During the second wave of Covid, we lost (sadly as did many others) a dear loved one, my husband’s father. Our hearts broke as his breaths breathed away. After his passing, we reflected upon the legacy he left behind and what we would choose to continue to pass down to our children of that lasting legacy. My husband spoke so much of his childhood trying to recall memorable moments with his dad. Having been isolated with our Fighter-Girl meant that we had created limited new memories with our families. It stung our hearts. Anything that was ever a disagreement before melted away and carried no weight as our hearts bled out as he breathed out.  

 

We thought we were being so safe in our bubble wrap of isolation and then two years into the pandemic, we all got Covid. The virus travelled from each of us until it reached our Fighter-Girl. Panic set in. She was hospitalised and in need of oxygen, it began hissing through her nose making its way to her lungs. Her brother and sister, Zakariyya and Zaynab, could vocalise how their joints ached, their heads hurt and their fevers burned. Our Fighter-Girl’s lungs clogged up as she struggled to cough what filled it. She couldn’t tell us where it hurt; she couldn’t indicate that she was uncomfortable. All we could do was to take care of her as best as we knew her. A few days later, she returned home, Alhamdulillah (All praise is due to God). However, Covid left its mark on her lungs. Her siblings flooded her kisses and hugs. She had an important surgery looming that would improve her chances of wearing splints again. Covid re-routed that plan as her lungs needed trusty time to heal before she could go under anaesthesia again. She had already started the year with surgery on her eyes. The glassy glands that act as wipers to clear her eyes stopped functioning as they should and this needed to be treated.

 

3 Weeks after Covid, she was completing her recovery when she got sick again. Her oxygen levels were dropping and she was weak. We didn’t believe the low numbers that the monitor was showing us; we thought it was broken – it had to be. Upon reaching the Emergency Room (seeing her low oxygen level numbers) a team of doctors flocked towards her in an aid to save her. Her paediatrician arrived and set her up on high-flow oxygen and a potion of medications that would hopefully buy us more time with her. He then had “the talk” with us. That dreaded talk that no parent wants to hear about their child. The talk we’ve heard before. The talk my ears started rejecting the moment it escaped his mouth; “Tonight is about keeping her alive.” The only thing I held on to what he said that night which carried me through was, “We’ll keep fighting.”

 

Oh how she fought, her sword was sharp and swift – she was on a high dependency of oxygen as pneumonia spread throughout her lungs. We momentarily celebrated as she appeared to be getting better. Then it happened – so quickly.

She crashed.

 

The machine was in complete control. When she breathed out, the sound escaping from her mouth was more of a whistle than a breath. She struggled so much to breathe. She couldn’t be picked up; the discomfort of being picked up was too unbearable as her lungs laboured. Her lungs collapsed. It felt like I was collapsing too, it felt like our family was collapsing. Then the next “talk” with the on-call paediatrician happened; “The machine is on 100% oxygen, it doesn’t go any higher than that.” It felt like I was suffocating again as tears stained my cheeks. I found comfort in the team of amazing people; doctors, nurses, physiotherapists and her dietician; they offered words of support that Zahraa was a Fighter, a warrior and that she’d pull through. If she didn’t, the “if” I didn’t want to hear; that we had to let Zahraa lead us.

 

Her Dad, brother and sister arrived at the hospital with the possibility that this was the last kiss, the last hug and the last snuggle. As the machine forced the air through her lungs, Zaynab and Zakariyya held on as tight as they could. “When is Zahraa coming home?” my 3 year old son asked. I don’t believe I answered the question; I was lost somewhere in the room. At the time, my dad made frequent contact with me and one of the things he messaged me that stuck with me was; “Where there is life, there is hope”. I carried that hope like a burning torch in my heart; I dried my tears and pencilled a smile on my face and I waited for her to fight. She fought like she had run a marathon and, approaching the finish line, it was like she was about to give up but she took everything she had left inside and pushed through to finish first.

After 2 and half weeks in ICU, she finally came home, Alhamdulillah (All praise is due to God). We were advised to keep her extra safe as her lungs had been through a lot. So, we went back into the bubble, until. My dad passed away. My world smashed as we made preparations to bury him. Looking at his lifeless body, all I could think about was that this was the mighty man that buried my childhood passed away brothers and sister – and now it was his turn. It happened so suddenly, it felt too quick – like his breath was snatched away without any warning. The month before he passed away, he spoke so much about the many beginnings in his life – like perhaps he knew it was the end. I wish, like most of us do when their loved ones pass away, for more time.  I’ll definitely pass on the precious pearls of the values he held close to his heart to my children. I’ll hold on to his famous saying, quoting Newton’s Third Law: “For every action there is a reaction”.

 

Through life and death, I’ve learnt that there will be people who will try to change your story to suit them, to justify their responses – but they can’t change what’s inked in history. There will be people that will arrive in some chapter in your book and judge your actions but had they read your book from the beginning perhaps they’d put their judging shades down. There will be people who choose to hear only what they want to hear and that’s okay. You have to be okay with this but know it carries zero weight in your life – it’s not your responsibility to convince them otherwise. Some people will blindly believe what they will – and for not pursuing the truth – that is responsibility failed on their part. We all have to take responsibility for our part. Sometimes we’ve both failed – and that needs correction. I’ve seen that there will be people that will spread many untruths about you to disqualify who they think you are. You have to be okay with this too because their wagging tongues does not change the direction of your future. Some people will still speak mindless things without thought and for them certain messages will never be delivered.

 

Our Fighter- Girl was hospitalised twice after the passing of my dad – in need of oxygen after getting sick. We were awaiting a big surgery that could change the quality of Zahraa’s life. Her lungs needed time to heal and to get stronger to undergo anaesthetic. We were isolating for 6 months in anticipation of this surgery. This surgery (suggested by her wonderful physiotherapist) was hopefully going to stop her brain from sending overloading messages to her feet and thereby pulling them inward. By doing so, we could no longer splint her feet. No splinting meant no standing in her standing frame. This surgery, Insha Allah (God-willing) was going to change that. The day finally arrived. We were excited and nervous. We were scared. The neurosurgeon and anaesthetist ran us through their plan; a detailed pre-emptive plan to guard Zahraa’s lungs at all times. We are incredibly grateful for their kind and patient responses as we asked many concerned questions.

The surgery went well, Alhamdulillah (All praise is due to God). She needed some oxygen assist but the surgery itself went well. She was home for three days and then her fever scorched, her breaths became harder and her oxygen levels began to sink. In a flash she was back in the ICU with Covid. She was crashing hard, the machine was in control again; and the unbearable “Talk” with her paediatrician happened like history was on repeat. We, as a family, were crashing again. The medical family-team fought for her and by the Almighty’s will, she fought back.

One

breath

at

a

time.

 

Although there may be people that can hurt your heart with their words, there will be people who will comfort it too. There were people who suddenly stepped up to message if she was okay; there were people who went beyond what they needed to offer support. To all of those people, we truly appreciate your support and prayers for our Fighter-Girl. As always, to the wonderful medical people that we’ve met, you’ve changed our lives more than I can express.

 

To whichever end, we will guard her, Insha Allah (God-willing). Her awesomely awesome paediatrician has a plan to swing into action if or when she gets sick to save her as best as he can, Insha Allah (God-willing). We’ll go one respiratory infection at a time. The Almighty is in complete control and onto His rope we will hold on to. Her hip (which was operated on 5 years ago) has dislocated again from all the turning over to get her into prone position to let her lungs expand during her critical moments. Unfortunately, her lungs aren’t strong enough to undergo surgery and the surgery itself may cause her more pain. It appears now that her other hip has dislocated too. We go one breath at a time. During certain movements, during physiotherapy, nappy changes or putting her to bed – we can feel the bones move in and out of place. She reacts and cries when the bones snap out of position. We go one breath at a time.

 

Yes, we will continue masking, isolating and social distancing as far as it is possible for us as a family. Yes, germs and bacteria are very real for our family – in case it’s not too big of a deal for the majority of families out there. It’s a big deal to US because we know who we are trying to soundly safeguard. No, we do not mean to offend you. But you offend me when you brush off what I hold close to my heart. My entire parenthood journey has been about protecting Zahraa and her sister and brother. If I could filter the air around her, believe me – I would. Allow this to be a guideline for you. The stealthy anxiety when she is so sick and I’m separated with Zahraa in hospital for days away from my other children is not worth offence. Rather, I hope that you will learn understanding that as our limits are stretched and pulled at, that you will be a space for soft landing. Yes, even though she cannot walk, talk or sit; her importance is equal to that of her siblings with those abilities.

 

Perhaps there will come a day that her breaths will breathe away. Perhaps there will come a day that after pushing her in her buggy into the hospital, that we will leave with it empty. For every time an individual doubted that her precious presence was worthy of air; make no mistake, her breath changed our lives only for the better and we will use all of our breaths to preserve hers. All of our breath has purpose; it’s what we decide to do with it that changes the air of those around us. She breathes easy when her sister and brother flood her with kisses and snuggles and read exciting stories to her. She breathes out easy when she’s about to fall asleep and we kiss her eyes shut. We’d like her to forever know that her beautiful breath has forever changed ours.