Just a little update and shortcuts :)

I’ve not posted in a while, life happens and I have so many topics I’d like to discuss that I find that I’m struggling to pick one to focus on!

I am also looking at revamping the website to make it more user friendly to find articles and move away from a blog focussed site and include more pages, links, information relating to prematurity, pre-eclampsia and of course #charlottesarmy and the preemie octopus that everyone loves so much!

Are there any specific topics that you would like to hear about? Perhaps an update on where Charlotte is currently, other than being the worlds most amazing and beautiful toddler? (yes, I am totally smitten and bias!!!)

I’ve also been asked for easier links to access our Facebook page and Instagram page. From a laptop the page is easier to navigate and the shorcut tabs to link to FB and Insta are easy, but I have noticed on tablets and smart phones that it’s not as user friendly. So in the meantime here are the links for easy access:

Facebook: https://www.facebook.com/RaisingCharlottePE/

Instagram: https://www.instagram.com/raisingcharlottepe/

For new followers wanting more information relating to the crochet preemie octopus here is a link for one of my articles as well as the crochet pattern: http://raisingcharlotte.co.za/2017/11/21/charlottes-army-crochet-octopus/

So in the meantime I’ll leave this here. Charlotte 2 months shy of turning a whole, mighty and incredible 3 years old in early May! Can you believe how time has flown?!

Broaching the heartbreaking topic: Abortion

I’m going down the rabbit hole with this blog post. One of the most debated and contentious subjects out there in this big scary world. One that brings out the best and worst in people.  Abortion. More specifically late term abortion.

Over the last week I’ve seen a number of post shares of articles relating to the newly revised Reproductive Health Act passed in the State of New York in the United States by their governor, Andrew Cuomo on the 22nd of January 2019.

Most of the articles shared have been propaganda from websites who have no right in posting the misinformation and biased ‘information’ that they have been sharing.  These articles imply that any women can simply walk into a hospital or clinic in the third trimester of their pregnancy and terminate a perfectly healthy pregnancy at a whim. The bill which was passed couldn’t be further from the truth.

As many may already know. I was diagnosed with a life threatening illness to myself and my daughter when she was 22 weeks in gestational age.  At 23 weeks and 3 days I was advised to terminate her as her chance of survival was incredibly low, she was no longer growing, she and I were at risk of organ failure, strokes, fluid build-up and death. I’d never thought I would ever face the possibility of requiring an abortion  with a pregnancy that was very much wanted and while carrying a child that was already so very loved. But the world is not fair, it is often cruel and unjust. We made our decision and I am forever grateful that I had the legal right to make a decision that I felt would be in the best interest of myself as well as my daughter.

In South Africa the law on abortion can be abbreviated to the following:

  • Any woman of any age can get an abortion if she is less than 13 weeks pregnant, she does not need to supply any reasons for her decision;
  • If she is between 13 and 20 weeks pregnant she may legally have an abortion if her own physical and/or mental health is at stake, if the baby has severe mental and/or physical abnormalities, if she is pregnant as a result of rape or incest or if she is in a situation where her economic or social situation is deemed insufficient for her to raise her child.
  • If she is further than 20 weeks pregnant she may get an abortion ONLY if her life is in danger or there are serious defects in her unborn child which make them incompatible to survive beyond birth or are already in physical pain.
  • Abortions beyond 24 weeks are rare and uncommon and not performed unless medically necessary.

But back to the New York State Reproductive Act of 2019. 

* It changes a specific section of their current law which deals with abortion. Changing it from a penal code to a health code;

* It allows midwives and physician assistants to perform certain approved abortions;

* It guarantees women the “right to an abortion, up to the first 24 weeks of pregnancy as codified in Roe v. Wade”, this law is exactly the same as the current federal law in the United States of America that has been active for the past 46 years; and

* It allows exceptions which will permit abortions after 24 weeks gestational age.  This is only permitted if the women’s life or health is at risk, or if the foetus is not viable and cannot survive outside of the womb.

In America third trimester abortions account for 1.3% of all abortions performed. In South Africa I’m uncertain as I couldn’t find reliable sources online for accurate statistics.

Read those again, and then again.  Then go back to the articles you have shared. Not one of articles I have seen shared have divulged any of this information. Quite the contrary, their propaganda is to exclude this information. Alluding to the fact that women across the state of New York can simply waltz into their nearest hospital a few weeks before their due date and terminate a perfectly healthy infant because they no longer want that their children.

Have you ever found yourself in the position of possibly needing to terminate a pregnancy?  Particularly after you have felt your child moving inside you. After you have heard the beauty that is her heartbeat? After you have had several scans showing her movements, her tiny little hands, her sweet delicate nose? 

I was faced with that. I was dying. My child was dying. Her chances of survival at my initial diagnosis was grim, she was not likely to survive beyond birth. If she did survive she would not likely live for long, her body would be unprepared, she would be in pain, she would suffer. At that point she was just short of 23 weeks gestation.  Infants born before 24 weeks gestation have incredibly low survival rates, from 24 weeks upwards their chances of survival increase daily, depending on their individual circumstances.
At 26 weeks their survival rate increases to 70%, again, dependant on their health status and medical interventions given prior to their birth.

I can go on ad nauseum on this topic, ignite many fires and lose many friends I’m certain. But the bottom line on late term abortions is this:

Children beyond 24 weeks gestation are loved.

Children beyond 24 weeks gestation are wanted.

Mothers carrying a child beyond 24 weeks gestation do not want to lose their children.

Finding out that your child is already possibly suffering from debilitating deformities and will either not survive birth or will suffer in pain for a few hours after birth, before passing away in your arms is a thought that is quite simply, unimaginable.  Knowing that if you continue with your pregnancy that you or your child will likely die. Knowing that if you choose to continue with your pregnancy, that your child could possibly survive but would probably lose their mother. Knowing that your child could possibly survive, but that they would spend months fighting for their lives, being poked, prodded, and unable to be held or comforted and face the possibility of any number of lifelong health afflictions that will affect their quality of life.

The New York State Reproductive Act of 2019 allows for a woman’s body autonomy. It gives her the right to choose what is best for her, for her unborn child and for her family. It allows her the option to spare her child further pain and suffering. Previously the law only allowed late term abortion if the mothers life was at risk, it did not allow women to terminate pregnancies if they found out after 24 weeks that their babies were already suffering or would not survive outside of the womb. 

Let me reiterate. A woman after 24 weeks of pregnancy is not going to be able to get an abortion simply because the wants one.

Our children are loved.  Our children are wanted.  From the moment our children are conceived and we find out about them, we go out of our way to ensure that they have the right start in life. We stop drinking, we eat healthy, we take our vitamins and suppliments, we have regular checkups with our doctors to monitor their growth and health.  The thought of losing them is always in the back of our minds, we seldom think it out loud unless we have a history of miscarriage and infant loss.

We chose to fight for as long as possible for our daughter. We agreed that when my body gave signs that it was beginning to fail that we would need to deliver her.  We agreed to give her a fighting chance. But I was given the gift of choice, after receiving all the medical advice possible, I was allowed the right to choose what would be best for me and for our daughter. I was given body autonomy.

I’ll be lying if I didn’t question my motives on more than one occasion in those first few weeks of her NICU stay. Did I make the right decision? Was my decision to fight for her valiant or self-centred? What would her life look like?  Was I capable of caring for child who was likely going to be medically fragile in some form?

Before sharing articles on such delicate, heart wrenching topics, ask yourself if what you’ve read is concise and accurate. Before you condemn the act of termination beyond 24 weeks, place yourself in another woman’s shoes.  If after you have received all the correct information, you still decide that abortion isn’t for you, respect that it is the right choice for someone else, respect that it will be the hardest decision any mother will ever have to make. Respect that for the rest of her life she will mourn the loss of that child. Respect that she has a right to protect her unborn child from pain and suffering.  Respect that she has a right to choose her own life.

We all have a story to tell

Have you ever sat at a group of people who are sharing stories or discussing topics that you are completely unable to relate to? You sit quietly on the side, with nothing to contribute, awkwardly awaiting a welcome change in topic to something more relatable, something that you can share in?

I’ve always struggled to be a part of most conversations which revolve around the stereotypical feminine conversations. I couldn’t find anything more tedious than shopping or discussing the perfect pair of stilettos ( and I loved stilettos). I always found myself gravitating toward mixed sex groups or even the guys only groups at parties, the topics of discussion were more appealing for me, and not about ‘Sharon’ who’d shagged so and so, boyfriend/husband or who had the best sale on shoes that weekend. Yeah, I’m stereotyping, but bare with me for a little bit longer.  Not being able to relate or contribute didn’t mean that I didn’t want to.  I longed to fit into one of these little cliques. With pregnancy I saw a window of possibility. For once I would be able to relate, share stories and not just sit on the side-lines, struggling to understand why a specific topic was so damn interesting to everyone but me.

My pregnancy and our daughters’ birth was not easy. It was terrible to be perfectly honest. In between first trimester sickness, low blood pressure from the summer heat and being diagnosed with a life threatening illness I had possibly two weeks of pregnancy bliss.  In the early days of this blog, when there was still a glimmer of hope of being able to carry Charlotte to term, I shared a bit of my pregnancy ‘glow’, which was more like being torched at the stake like a Salem Witch than a joyous pregnancy glow.

My pregnancy was downright horrific. So much so, that the idea of ever falling pregnant again has me losing my breath and raising my body temperature. 

The trauma we experienced as a result of my pregnancy complications and her early birth is not something that I ever expected to have such a lasting impact on me. Once we’d walked out the NICU I somehow expected it to be put to bed, a chapter that had ended to be replaced by the blessing of having our daughter alive and healthy. That having her home would be enough to vanquish the demons of our experiences.  But as most preemie parents will know, it never truly leaves our hearts and minds.

Don’t get me wrong. I’ve made peace with our journey.  What is done cannot be undone. I’m completely comfortable in the knowledge that another child is not likely to be part of our family’s story.  I’m proud of our journey and all that we have overcome. But our story is a difficult one for many others to process.

And with my pregnancy came a few weeks of meeting with similarly expectant mothers in online support groups and coffee dates. Discussions about weird cravings, the glow everyone experiences, the flutters and kicks, increased hormone levels.  I felt nothing but sick all the way through to 26 weeks and 3 days of pregnancy. I couldn’t stand the sight of meat. I felt permanently nauseous. I felt feint in the summer heat. My feet swelled. I was a downright miserable mess.

And for two beautiful weeks I felt it, I could relate to other expectant women! It felt great to finally feel like I fitted into something special that so many other women experience.  And then it all went to shit as you know by now. And the group of women and parents who I am able to relate to dwindled, dramatically, to a small niche circle of women who share experiences and stories that no family or person should ever have to experience.

I still see it when I’m in a new mom group that I’ve met. When everyone is sharing their birthing stories, the laughable moments relating to the first poop, maternity pads and when almost everyone in the ward sees your breasts when you first try breastfeeding. I share in the laughter and can even relate to a few of them, there was a time where I couldn’t even sit through one of these discussions.

Through the natural progress of development which comes from child rearing I’ve met new mothers, new groups of parents and find myself joining little meetups and coffee dates.

But there always comes a point at these meetups when someone new turns to me and asks how our birth story was.  Along with the question, inevitably someone will blurt out that we have a miracle baby, or give a look of pity in my direction because our story is not easy to hear. The moments that I now deem laughable are either unrelatabele or are overshadowed by the rest of our story.  If I do go ahead and tell our story it’s more often than not met with uncomfortable faces, condolences and awkward silences. So instead I tend to sit back silently and listen to others tell theirs or simply say that mine is far too boring to chat about.

Sharing a story like ours can be tricky. It is one of the main reasons why I love to share on Instagram and on my blog. Because there are so many like-minded parents out there who have experienced the same and sadly, far worse than what we have.  Who understand how uncomfortable sharing our story can make others.  They understand that we do want to talk about our journey for sympathy hugs and looks, but because it is our story, it’s all we know, it’s what we experienced and for us it’s likely the only pregnancy experience we will ever have. We fought for our children, and they fought to survive.  It’s something to be proud of, but talking about it publicly makes many people uncomfortable.

I find as well that I’m fairly reserved and quiet about pregnancy when friends announce they are expecting. I’m beyond thrilled for them. I cry tears of joy for them and sorrow for us in the privacy of my bathroom.  When they reach mile markers that for us resulted in diagnoses or delivery I’m torn between absolute relief that they are unlikely to travel our journey, envious that they were able to get so far without falling ill like me and then wracked with absolute guilt for being jealous over their health and great fortune.

I have statistics and facts ingrained into my head from weeks of research on the topics of pregnancy related problems, preeclampsia and HELLP syndrome. I find myself catching my breath when someone says they have crossed the 12 week marker and are now considered a ‘safe’ pregnancy. I know what can go wrong. I experienced it first-hand.  I want to warn them that up until the day they hold their babies in their arms that they are not safe, that something can still go wrong. But I keep quiet, because striking fear in my friends is not something I want to be responsible for. When a friends pregnant feet swell up, I immediately want to rush them to a hospital for a urine test my brain jumps to the worst case scenario, because that was my only experience in both pregnancies. I know no different and am unlikely to ever experience a ‘normal’ pregnancy.

Whether we have picture perfect pregnancies, pregnancy related problems ranging from minor to severe, whether we are fortunate or not to have our children survive or pass on, we want to share our stories, because they are our stories.

So spare a thought for the mom who is basking in all the glory of the perfect pregnancy, she is truly blessed and fortunate and deserves to be proud of it, even if you are tired of her one hundred daily posts about how blessed she is, because she honestly is blessed. Share in the moment with her. But don’t forget to validate others experiences, even if they make you uncomfortable. I guarantee we all want to share our journeys, no matter the ending result. Don’t ignore friends who have experienced a tragic loss because discussing the death of their child makes you uncomfortable.

We all have a story to tell!

Time stands still for no one.

Time never stood still when I sat beside my dad on his last night. Our world grew quiet, it certainly felt slower, but it never stopped. The nurses gave us space and carried on with their duties.  I sat drinking hot chocolate at 2am, talking softly to him with a half finished game of soduko resting on my lap.  That evening felt like it would never end and suddenly it was over in a fleeting moment.

All while the world around us seemingly remained unchanged and carried on as though nothing was amiss.

When I was on the farm, with my ‘nephew’ nestled snuggly asleep on my lap. While I was cracking jokes with my friends and fiancé in the car, on our way to our cottage to collect drinks and snacks. The world gave no indication that my mother had left us. The world ignored our loss, time did not stop and everything around me continued on as though nothing was amiss.

We all wish for the world to stop moving though, for time to stop, if even only for just a second. We wish for it to recognise the loss of someone so unique, blessed and special to us. We wish for that little extra time with loved ones. Time to process what’s just happened. Time to make sense of it all. How can we not expect it to not stop, or pause at the very least, when our world is so drastically altered forever. How can the world simply continue as if nothing has changed, when everything has.

Our family has lost many loved ones this year and in recent years, too many losses for one family to bare. I know of other families who have suffered similar losses in theirs. And no doubt, across the globe families are enduring losses which crush their hearts and bring their own worlds to a standstill.

But they live on in our memories and our stories. They live on in their loved ones and in the impacts, marks and deep etches which they have made in our  worlds, and the greater world beyond.

We have no control over time, we cannot slow it down. We cannot predict how much of it we have each been given. Some people seemingly drew the incredibly unfair short straw, while others who don’t appear to deserve it have it in abundance and a rare few are fortunate enough to live an extensive, long and fruitful life.

On this last Thursday someone who deserved every second of every day, and so much more, left this earth.

A formidably strong, yet gentle, dedicated, loving and passionate woman. Who stopped at nothing to provide for her children, in less than ideal circumstances. A woman who became a widow in her early thirties with 3 young children in tow. Who taught her children to drive in spite of never having driven herself. Who worked 3 jobs at times to provide for her family, and always had place for anyone who needed a helping hand. Who raised not only her own children, but her grand children as well. Who stubbornly watched as her quaint little suburb and street was slowly taken over by drug lords and addicts who regarded her as their ouma and ensured nobody ever entered her property or caused her harm.  Who took great pride in her beautiful flower garden.  Who was always available to embrace and love you, yet equally quick to call you out on your bullshit with deep love and honesty. Someone who sat for hours on end, crocheting the most intricate items, from cushion covers, doilies, pot plant holder, dollies, socks and everything between. Who swore blindly every year, for as long as I can remember, that she would never again crochet socks for her entire family, knowing full well she’d be doing the very same thing the following year. Who made the best dam roast chicken and cookies in the world.  Who marvelled in our miracle daughter and even on days where she had little to no energy, was always able to offer at the very least, a smile and quick chat to Charlotte and share a biscuit with her.

She was a daughter, a sister to four siblings, a wife, a mother to three children, grandmother to 8, great grandmother to 6 and great great grandmother to 3. A shoulder to cry on, the voice of reason and logic, the provider of tough love and so much more.

Ouma in front of her little house with her beloved flowers

When I sat with her three days ago, I knew our time with her was limited. I wanted the world to slow down and stop for a moment. I wanted for it to acknowledge her greatness and impact. How could it not???

Yesterday morning she left this world, after spending 96 years here. Deeply etching herself into its surface and in the generations of our family who have followed in her footsteps. The word didn’t stop at the news. But our part of it grew quieter, sadder, and a hole was created that will never be filled.

Knowing that time stands still for no one does not mean that their loss is insignificant though. As her family and loved ones move forward in life without her physical presence, we are reminded that we are never truly without her. We are on this earth because of her. We grew up with the passion, love, morals, ethics and skills taught by her. And so shall our daughter be raised. Knowing that she comes from a long line of incredibly strong willed, compassionate and determined women who have shaped her before she was even born, to live life to her full potential, seizing every precious moment.

There is a strange and beautiful calm in knowing the world doesn’t stop turning in these moments. That, in spite of our losses, joys, sorrows and mistakes, that the world hasn’t come to a complete standstill. That tomorrow there is still an opportunity for us to make right, find love, discover new talents, embrace new friends. After all, time doesn’t stand still for anyone and the world doesn’t stop moving. We aren’t all promised tomorrow, so best we do the very best with the days which we have.  None of this is in our power to predict or control. What we do have control and power over is how we choose to spend it, and with whom.

I see reminders of my parents in my beautiful daughter daily. My moms infectious, delightful laughter. My dads cheeky grin, his sharp features and old soul eyes in her face. She never got to meet them, so it’s up to me to ensure that she knows what remarkable grandparents she had as she grows.

Two incredible women meet for the first time.

Sharing biscuits and no doubt catching up on all the latest skinner (gossip)

Our daughter also has such compassion and determination. With a truck load of stubbornness that will no doubt see her well in life, and which more often than not has us torn between pride and frustration depending on how she chooses to implement it. These traits she has inherited from her great grandmother. My ouma.

Ouma Tina in 1946

Ouma Tina in 1976

Christmas 2007. Ouma with her 3 children and some of the generations who have followed.

Christmas 2011

 

Rus in vrede liewe Ouma.
Ons sal jou altyd lief hé en jy sal nooit uit ons harte stap nie.

Everything happens for a reason

“Everything happens for a reason”

It is one of those phrases often offered up as reassurance that whatever devastating or stressful circumstance has occurred, is somehow justifiable.  It also happens to be one of the most cruel and senseless sentences offered to someone in situations where lifes injustices just do not make any fathomable sense whatsoever.

I remember hearing these words when we had to terminate our first pregnancy with a D&C surgical procedure.  I was told this when our daughter was born 14 weeks premature. And once even had this sentiment thrown at me when I discussed my daughters survival rates with someone.  “Just remember, everything happens for a reason” As if this is any consolation for our fears and grief.

In a month which honours pregnancy and infant loss I have seen so many posts online where these hollow words have been offered as some form of comfort and solace. Please let it be known, these words do nothing to comfort someone experiencing a loss.  It will stay in our hearts and memories for as long as we live and breathe. It will never make sense.

I knew within days that I was pregnant. I instinctively knew something was different. But I brushed it aside and went on with my life. Until a few weeks later when I knew I had to confirm my suspicions and blood tests confirmed it.  I was beyond terrified and shocked. We didn’t want children. We had never planned a future which included us having to care for a little person.

But we grew excited at the prospect and opened ourselves up to the life we would now be leading. It never occurred to us that something could go wrong. Nobody in our circle of friends ever spoke of miscarriage or infant loss. So at our second ultrasound when there was no heartbeat we were blindsided.  Our baby had stopped growing, but my body had not recognised it’s failure to develop further.

Our elation instantly turned to devastation. The little life we had grown excited for was over, before we had even seen a heartbeat.

The problem with the pregnancy is what is referred to as a Blighted Ovum and is when a fertilized egg attaches to the uterine wall but fails to develop at all, or stops developing in the very early stages.  The body has not recognized the failure of development and the placenta continues to grow whilst all normal pregnancy symptoms are present and HCG counts continuously increase, as would occur in a normal pregnancy.

A blighted ovum accounts for almost 50% of first trimester miscarriages and most women are not even aware that they were pregnant to begin with. While the causes are not completely known, there are studies which suggest this occurs because a woman’s body recognises abnormal chromosomes within the foetus and naturally does not allow the development to continue as the foetus is unlikely to develop into a healthy infant.

The loss we experienced changed our lives as it does for many.  Over time though I have learnt that this loss is not considered real for others. I recall a woman once saying to me ‘Oh, that’s not a loss, that was a fake pregnancy, why make such a big deal about it’. I didn’t respond, but her comment was cold and cruel beyond any reasonable means.  I recall sometime later that someone asked me about my daughter (who was still in NICU after being born 14 weeks premature) and the very same woman turned around and asked me if my baby was a vegetable.

The world is full of these types of people. As a fellow blogger stated this morning ‘Some people are born with compassion and empathy in their soul, I firmly believe it’s not a skill you can be taught.. it is something you either have or you don’t’  And she is 100% correct in this.  Yes, we sometimes struggle to know what to say or how to offer support, but that is very different to being completely incapable of showing compassion and respect for someone else’s very real loss.

I have spoken and offered support to so many woman who have faced premature birth or infant loss over the last two and a half years and I still struggle to find the right words to offer my love and support. For each and every one of them their journey has been a struggle, many were not able to take their beautiful children home and with each loss experienced I was wracked with heartache, injustice and a terrible guilt knowing that I was one of the lucky few who were blessed with a surviving infant.  I wanted to promised each and every one of them that their stories would end as ours had, but life is not fair. Life flings shit at us that makes absolutely no sense. And none of it ‘happens for a reason’.

So spare a thought this month for loved ones who have loved and lost, be it at 6 weeks, 6 months, full term or after birth. Nothing in this world is promised to us. Nothing is guaranteed.  Much of what happens is beyond our control. But what we can control is our compassion and respect for everyone experiencing a loss.