My Journey With… Parenting a child with Cystic Fibrosis

After 9 years of blogging I only very recently came up with a name for the beautiful readers of my blog!

Becomers (Noun: one who becomes)

I’m SO excited about the name “Becomers” because I truly believe it is a wonderful word to represent who we all are – but esp those who read Becoming you!

My hope for this platform has always been that it encourages, it inspires, it stimulates, it resonates, it uplifts.

And that’s not because of me, but rather because of the essence of the stories that are shared. I want these pages to be filled with stories and experiences that make a difference to the lives of those who read them.

One of my favourite ways to do that is through various series where I feature the stories of my readers and My Journey With… is exactly that.

This series is about getting real… sharing the real stories that touch people’s hearts and resonate long after they’ve closed down the tab. I started My Journey with… as a way of breaking the “everything is perfect” perception that is often the case on social media.

This series features real women sharing their experiences of life, from bipolar to chronic fatigue, from extreme weight loss to miscarriage, from anxiety disorder to the loss of a spouse.

And all with the aim of helping those around us who are struggling silently.

I’m so honored that these women have chosen Becoming you as the platform where they share their stories… and I’m so proud to be making a difference, breaking stigmas and starting conversations!

Today is the turn of Jolene from Pieces of Jolene, a mom of 2, who is sharing her story about how her journey of parenting a child with a chronic illness, namely cystic fibrosis.

Read on below for more of her story…

 

My Journey With… Parenting a child with Cystic Fibrosis

Our journey with Rynah did not start unlike any average, or what you would call “normal” journey.

Rynah is the 2nd of two children, our eldest a boy and of course Rynah completing the pigeon pair. She was born 4 weeks early on 30 October (just missing Halloween). My son was also 4 weeks early on the dot, so I was kind of expecting it. It was a calm day, and by the time I had realised I was going into labour, I slowly gathered my things, along with my already packed bag and we went to the hospital with our eldest (turning 9 this year) in the car. Everything was perfect – Rynah was born the next morning (without my husband being present – she ended up surprising even the dr with how fast she came). Rynah’s Apgar Score was 10. She had no breathing issues. She was the perfect bundle – seemingly completely healthy.

And so she was this healthy baby with a little spark in her eye for quite a few months. The first time she was really sick, was at around 9 months. She had a cold earlier, but it came and went. But at 9 months I noticed her breathing just wasn’t right. She was treated for bronchiolitis. Then she started with a nightmare of ear infections. One long ear infection that would flare up as soon as it calmed down. Then her chest would flare up. Since we have asthma in the family – we’d assumed, this was just asthma, and she would outgrow it.

Fed up with her ears, I took her to an ENT and she had to get grommets just before her first birthday. Oh the irony, I remember driving to the hospital early morning – alone – and being so scared of her going under. I held her as she became limp in my arms and they sent me out. The operation took 30 minutes and she came out a little grumpy, but a real champ. She looked 100% within an hour after the grommet surgery, surprising everyone with her strength and bubbly personality.

I still remember meeting a mom who had been in hospital for weeks, her child had pneumonia due to asthma complications from a cold, I counted myself lucky that I was just dealing with an ear infection! Little did I know…

But saying that, my gut told me for months already, something just wasn’t right. People would tell me, she will be ok! And I would say, but something is wrong here….I cannot put my finger on it. Mostly, I kept quiet about this gut feel… Most people thought I was a little paranoid and overanxious. So I started believing them. She got her grommets just before her 1st birthday. Eerily I just realised, she had a lobectomy (the removal of her right upper lobe) right about the same time of the year as she had her grommets placed two years prior.

I cannot go into all the details, all I can say is that her diagnosis is a blur. We spent ten days in the hospital not knowing what was wrong – the Drs not being sure and having to refer me to “the best” paediatric pulmonologist. I could see the concern in the Dr’s eyes when she saw the x-ray.

Nights became blurred with days, me singing to Rynah, rocking her, crying at night and praying. Needles, tests and pricks and pipes down her nose. Screams from my child and I could not hold or console her. It was tough and traumatic. An endless wait of not knowing if she would be ok. But God gave me reassurance during this time.

After the diagnosis, life was an adjustment. I knew the nebuliser well, but this was an upgrade. An expensive nebuliser with all kinds of instructions on how to clean each and every part. Inhaled treatment 2 to 3 times per day, followed manual CPC (clearing her lungs of any sticky phlegm). Enzymes to be given with each meal, a handful of vitamins given daily. All these things were an adjustment, but the initial post-diagnosis antibiotics and the anxiety of her not wanting to eat/not eating enough really got to me the most.

Her routine was no longer the normal baby things that kept you busy – there was now an added responsibility of making sure that she stayed away from even the “healthy” germs as they could potentially harm her. And a persistent worry about the fact that one day I have to tell her that she has a shortened life expectancy.

This along with a then 7-year-old who was struggling at school due to the impact this unknown had on him, and work and a process of grief that my husband and I had to go through. It was a big sense of loss – we had lost the future of our child. We had lost a “normal” life – it would never be the same.

But we also gained so much. We gained an appreciation of life like never before. We started understanding that nothing in life is guaranteed. That death is just a step to a new part of life. And that there is no need to hold onto this life. But rather to live it fully each and every day.

Now that you have the benefit of hindsight, is there anything you might have done differently?

One thing I often catch myself thinking is – if I had only gone to a paediatrician sooner…. maybe the damage to her lungs would have been less. We could have been more proactive sooner. But then I also remind myself that there were no other red flags for Cystic Fibrosis – she was gaining weight well, growing nicely. She did not present the usual problems at birth often seen in a baby with CF, and she also did not show any signs of a baby that was failing to thrive (another big tell in children who have CF).

So if I find myself going down guilt lane, I take a deep breath and always remind myself that I always had her best interest at heart; that I could not have known, and that I can choose to accept and move on and protect her in the future but that at least I had a carefree few months with her where I didn’t know – and I could just enjoy being her mom, and bonding with my newborn.

What, or who, has helped you to push through this experience? A book, a person, an incident, therapy, medication or was it just simply time?

There are just too many to name. Firstly, my relationship with God. He showed up….in every hospital visit, in every late night of crying, in the fear of the unknown.

Then there are moms who have kids with Cystic Fibrosis who are amazing! They reach out and are willing to share their life’s journey and become your voice of reason. I have one lady in specific whom I will never forget – sending me a voice note of comfort during our hospital stay and she now feels like family.

My sisters – they have always been a big part of my life. My older sister, in particular, has helped me out in so many ways – we lost our mother to cancer. My sister has taken over the role of Mom. While her maternal personality used to irritate me a little when I was a teenager, it really is one of her best qualities,

My mother-in-law and my sister-in-law. They have been there for me on each and every level you can think of and I am exceptionally blessed to call them my family.

My husband, we have been friends (and dating) for 19 years this year. We have cried, laughed and screamed (to a certain extent) at each other. So having my best friend, and my husband to help me through this made a difference.

 

Obviously there is not always a reason for going through such hard times in life, but now that you are further along in the journey can you share any insights or personal growth that the experience taught you?

I think a great sense of perspective has been my biggest lesson, while living closer to God. Really experiencing his presence and acknowledging it.  I’ve been forced to take it a day-at-a-time. And while there is no reason – something good should always come from it. I’ve also learnt that when we are at our weakest when we feel most vulnerable, that is when God comes and truly shows you how He is your strength when you are supposed to be weak.

Where do you find yourself now? 

I am often a bit like a see-saw.  But luckily my highs are far more than my lows. For me, it helps to share our story. I often feel like I am not exciting people. People tend to handle us with kitty gloves. You fear what you don’t know- and Rynah seems breakable to others. I write about my experiences – that helps me a lot.

Facing your own fears takes the “bite” out of them. And nothing is as quite as big as it seems at the moment. I mean I half giggle when I think how scared I was for a short, quick anaesthetic to insert grommets. When last year alone Rynah had an anaesthetic 12 times. Oh, how things have changed.

The best advice I have received yet, (from my mom) was – how do you eat an elephant? Spoon by spoon. We cannot control anything or everything for sure. But we can defeat our daily challenge, one challenge at a time.

We have so many miracles to be grateful for – we had a rough two years with her being in and out of hospital often. I chose to make the best of it and not become sour. I made the hospital room ‘ours’ and accepted that she was in good hands. We endured the screaming and the needles and the crying, with all the emotions that of with seeing your child like that. I now enjoy the person Rynah is and appreciate her strengths.

We are grateful for her and our son and the small and BIG things in life – and appreciate that our little girl is “whole” in her very own perfect way. That we cannot ask for more.

No matter what – Rynah is always positive, full of life and wants people around her to feel better. So how can we not be positive?

And finally, if you accept that which you cannot control, and let go of the fear of death, it allows you to just ‘be’ still and know…

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Kathryn Rossiter

Kathryn is a South African lifestyle blogger and mom of 2 who has been blogging daily for over 9 years! She writes about travel, health, beauty, fashion, decor and family... but not food (unless it's food she's eaten made by someone else) as she is a hopeless cook. She only wakes up early for 2 things... a red-eye flight to somewhere exotic and early morning game drives. She has just finished an extensive home renovation and would prefer to never see another box again. She's never met a chocolate or glass of bubbles that she didn't like!

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