Guest written by Mandy-Lee Miller from PREGNANT IN CAPE TOWN
I can’t imagine hearing that your beautiful seemingly perfect baby is not perfect after all. I can’t imagine looking at my baby, my whole heart outside my body, and hearing that she is in danger and in pain and will need major surgery before she is one. Being a part of the Mamahood groups, I have sadly seen that there are far too many parents that have to hear these words or something like them, that have had to face this overwhelming fear. I ache to my core for every single one of you.
There is a saying that goes something along the lines of, you aren’t given more than you can handle. Although I rebel internally that any one person should have to handle so very much, this mommy proves it true.
I’ve known Claire for as long as I can remember. We were in school together from the time we were 6; and we were friends on and off over the years as we grew up until we went to different high schools and lost touch. We reconnected on Facebook, as one does, and became close again when we discovered we were both pregnant.
Witnessing how graceful and positive and unbelievably strong she has been over the past few years has left me completely humbled. She is one of the very best people I have ever known. She deserves so much better than she has had to overcome. The universe owes her a giant turnaround. I get choked up just thinking about it; so let’s just jump in…
This is her story
If real life were based on photos alone; if she had the time to post to Instagram and that was all you knew; Claire would be living an idyllic life.
She has been with Johan for almost 6 years. They got married 3 years ago because she wanted to start a family with all her heart. Having been raised by a single mother after her parents divorced at 8, and divorced herself very young; raising a baby as part of a loving and complete family was very important to her. She has one of the most beautiful little girl’s you will ever see, and is surrounded by loving family and friends.
Claire works for a non-profit organization that does financial inclusion in poor African countries. She has been working for more than 15 years; having paid for her own studies in HR and Website Development by working in the day and attending classes at night.
Sounds amazing right?
It took Claire a long time to conceive, after two years of trying, she finally got to celebrate that she would be a mom. The first few months of her pregnancy went very smoothly, with only a few cravings and aversions. Her immune system suffered, as often happens in pregnancy, and she got quite sick herself; but her baby was healthy and growing beautifully.
The second trimester brought a shift in her pregnancy experience. She pinched a nerve in her lower back making it incredibly difficult to sit; and then at 6 months she tore her stomach muscles.
In her own words
I had all the usual fears of being a first time mom ~ would I be ok, would I know what to do, would I be a good mom, would I mess my child up, would she be healthy? My early days of pregnancy were easy and wonderful, I just went off coffee and had a few cravings like slap chips.
Later on I was forced to take antibiotics three times due to severe influenza, much to my protest but the doctor’s insistence. I pinched a nerve in my lower back in my second trimester that lasted about three months, meaning I battled to sit. At 6 months pregnant I tore my stomach muscles; I actually thought my placenta had ruptured, it was horrible. Being pregnant, you are limited in the medication that you can take; so I could only rest as much as possible and let it heal naturally. It took about 6 weeks before the pain eased. It wasn’t dangerous thank heavens, just extremely painful whenever my baby moved.
Our little girl Kenzi was thriving; every scan and test came back perfectly normal, not a single anomoly spotted.
Giving birth really scared her, the thought of the actual process, and it was almost a relief when she was told she would need a c-section.
In her own words
It was all a lot easier than I expected. I had to have a C-section because I was not dilating and baby was running out of amniotic fluid. The actual delivery was fine, there were no complications at all. Kenzi’s Apgar was 9 out of 10 and then 10 out of 10; she was beautiful, she latched onto the breast first try with no issues, she was perfect in every way.
The first 6 weeks
Like me, Claire had a slow and painful recovery from her c-section. Kenzi had mild colic and slept terribly; but she was a happy healthy breastfed baby. Claire had all the usual mommy adjustment feelings, but was besotted.
In her own words
I was in a lot of pain for about 6 weeks after the surgery, and stayed on medication longer than most moms for the pain. I was exhausted due to the lack of sleep, which you NEVER get used to, and irritable for the same reasons; but I have also never felt so much love and joy. I loved being her mom from the second she was born.
It was scary though, you are never sure if you are doing the right thing, if you are catering to your baby’s every need. It’s intimidating to be a first time mom, I was always nervous. It took me a couple of months to “get the hang of it”, to know what her cries meant.
She breastfed very quickly, drinking for 5 minutes at a time but very frequently, so she “speed fed”. She had mild colic for the first four months, but I found that Telament drops really helped. Her sleeping was, and still is, atrocious. She sleeps for 45 minutes and then wakes up, throughout the day and night. (M: another thing we bond over.)
She has always been a very busy, happy baby, easy to smile and laugh. Her health was fine and she had reached all her milestones beautifully.
The day it all changed
On the morning of Kenzi’s 6 week checkup, they were preparing for the usual milestones check and feeling happy and at ease that she would ace it. The appointment started out as expected, and then took a frightening turn.
In her own words
Midway through the appointment, the pediatrician’s tone changed. Until that moment, we were convinced everything was fine, and then suddenly it wasn’t. She had heard a murmur in Kenzi’s heart, which she was concerned about; so she sent us to a Cardiologist for a full scan. It was terrifying.
We went to the Cardiologist who saw that Kenzi had two small holes in her heart, while doing the exam she decided to examine the rest of her organs which was standard for her. During this exam she discovered that Kenzi’s right kidney was very inflamed and recommended that we go see a Urologist which we did. The Urologist told us that she had a blockage in the urethra and that she would be required to have surgery.
A difficult year
Thankfully, the holes in Kenzi’s heart closed on their own after a few weeks; it is almost as if they were there just to draw attention where it needed to be. She was hospitalized 7 times for chronic Urinary Tract Infections (UTI), for a week each time, and this excludes all the doctor’s visits for UTI’s that she didn’t get hospitalised for. In her first year, she had a lumbar punch, she has had many drips and catheters and two renograde tests.
In her own words
My poor baby has had 7 extremely painful UTI’s as a result of this blockage while waiting for surgery. She spent countless weeks in hospital with tubes and drips in her while recovering and that was all before her surgery, which took place a month after her first birthday. She’s been under anaesthetic twice and had two surgeries, one kidney operation and another operation to remove the stents that they left in her kidney after the first surgery.
Her first UTI hit when she was only 6 weeks old, we spent our first Christmas together in the hospital, and it was dreadful. Kenzi has been on low dose antibiotics her entire life thus far and it’s still not over.
Kenzi had the surgery on the 20th of November 2014, it was a 4 hour long procedure but I am very heart sore to say that it wasn’t as successful as they had hoped. Her kidney has improved but is still not functioning at 100%. So she needs to stay on antibiotics for another six months, at which point they will do further testing and then decide whether further surgery is required.
Up until her first surgery, Kenzi’s development remained on track, but they hit a very rocky patch shortly after.
In her own words
She took a huge step back after the surgery, she stopped speaking completely. We have had to take her to a speech therapist and an audiologist to ensure that all is alright, and she is slowly starting to speak again, although she is severely behind other children her own age. She should be able to say between 20 and 50 words and she can barely say 10, so it’s a long road ahead. Before the surgery she was speaking beautifully.
This beautiful child is so much more than her health issues, through everything she has remained strong and happy and smiley and has brought her family far more joy and love than heartache.
In her own words
Through it all Kenzi has never lost her smile or laugh, to say I am immensely proud of her would be the understatement of the century. Two days after having major surgery, she was up and about, running all over the hospital room. She has a strength in her that is just amazing. I am in awe of her daily. With every UTI she has, she is still happy and acts like nothing is wrong, even given the vast amount of pain she is in. I am more in love with her than any words can express. She is such a happy, busy little girl. The absolute light in my life. Her strength is what has gotten me through these darkest of days.
To leave your baby on the operating table and be forced to walk away, there are no words to describe that pain; to know they are about to hurt your baby and you are allowing it, just killed me. I have tears now just thinking back. It was the hardest thing I have ever done in my entire life. She had no time to prepare for it, she just knows that mommy left her there and she woke up in immense pain. That just shatters me. I broke. I don’t think I will ever recover from that.
But she has moved on, how amazing is that?! Kenzi loves to dance, she adores the theme song from The Big Bang Theory and Two and a Half Men. She has such a loving nature, she adores animals (mommy’s girl), and she is very affectionate, and she loves being held upside down lol.
She is just such a joy, she makes me laugh and smile daily. Such a deep love, there are no words to describe it. I am immensely proud and privileged to be her mother. She is going to grow up and accomplish incredible things with her life, irrespective of what she decides to do. She has a stubborn streak in her that I am sure has aided her recovery, she’s a very strong willed little girl.
Claire’s experience ~ In her own words
During the year of UTI’s and the surgery, I lost three jobs due to the amount of time I needed off from work. I found it difficult to find a new job given that I had a baby that wasn’t healthy. I have been fortunate now to find something close to home and I just pray that I am able to hold onto this job. I have discovered that employers are not very understanding or compassionate when it comes to having a sick child.
I am fiercely protective of her, probably unhealthily so, but I cannot help it. I get so angry when she gets sick or hurt, because I feel that she has been through enough already. She has suffered enough.
I also don’t discipline her as much as I should because I hate to see her cry or unhappy. I know this is going to bite me later on, but I cannot bring myself to enforce rules when she is naughty; I just try speaking to her in the hopes that she will understand. I live with constant anxiety over her, every time she gets a temperature I panic that it’s another UTI. So I never get to relax and just enjoy my baby girl.
My mom is my best friend, we are extremely close. I am incredibly blessed that she lives with us; she has been an immense amount of help and support. I could not do any of this without her.
Growing up my dad was very absent from my life and has only really been around since I was 24. We are now closer than we have ever been and he has also been there for me, in his way. He has had two heart attacks in the last few months and also required stents to be put into his heart, so his health has suffered.
When you are a mom, you don’t have a choice but to carry on. I have to be there for Kenzi so I put my feelings aside and carry on for her, because she deserves nothing less than a mother that is 100% together and there for her. Kenzi’s strength gives me strength, if she can carry on, so can I.
Final words on…
Being a mom
You will feel guilty for everything.
You will have to make the hardest choices in your life.
You are NEVER sure if you are making the right choices.
You always worry if your baby is happy and safe.
If you are feeling these things – you are a good mommy!
Being a mom to a sick baby
Don’t try to cope with everything on your own, take the help from people when they offer it; I never did and the load was that much bigger.
Do your research, don’t just listen to one doctor, get a second opinion, and do research yourself so you know what to prepare for.
You will feel guilty for ALL her health issues; you will be emotionally drained; you will feel anxious throughout and worry that your child might die; but you need to hold onto your faith, and show your baby how to keep smiling; you will get through.
Preparing yourself and baby for surgery
It’s ok to cry and break down; I felt I had to keep it together the entire time while breaking on the inside.
Kids bounce back faster than you can imagine.
It is not your fault that she has to go through all of this; she won’t resent you when she is older.
This amazing woman fought to be a mommy every step of the way. She gave birth to a perfect baby girl, only to be blindsided with the news that her baby was going to have to fight every day to stay healthy, until she would need major surgery. She sat with her angel through endless tests and hospital stays. She lost three jobs because she had to be with her baby in hospital so often. She nearly lost her dad to two heart attacks in the past few months.
But she has kept smiling for her baby girl every single day. She will send you a message if she sees on Facebook that you had a bad night with your teething baby, and ask if there is anything she can do to help ~ and she will mean it.
Her ability to stay positive, to embrace motherhood no matter how overwhelming it might be, to show her baby girl every day what it means to be strong and find the joy in life, to inspire others, is amazing.
She is a Supermommy.
Mommies, there are too many of you that have to be brave every day for your little soldiers. You are showing your children every day what it means to be strong, to sacrifice, to overcome, to care, to embrace the small moments in life. You are teaching them to smile through uncertainty. You are teaching them that bravery is not about not being afraid; but about feeling the fear and doing things anyway. You are supermommies.
Mommies, every decision you make is for your children. When you hold their hands as they have to face surgery or needles or hospital stays; you are teaching them that you will ALWAYS be there when they wake up. You are teaching them that there are people in this world who dedicate their lives to helping others; that superheroes exist, though their capes might be white instead of red. You are teaching them to put their faith in others, no matter how big the fear. You are a Supermommy.
They feel your love every second of every minute of their lives. You are a Supermommy.
Claire, you are one of the best mommies and best people I have ever known. Kenzi’s beauty, strength and ability to take on life no matter how bad she might feel is a direct testament to the incredible inspiration you have provided her. You are both always in my thoughts. You deserve every positive thought, wish and prayer that this universe holds. Thank you so much for sharing your story and your precious angel with us. You are, without a doubt, a Supermommy. I am so incredibly blessed to have you in my life. Love you my friend xx
Sending all the love xx
Source: PREGNANT IN CAPE TOWN