PART VII: Babytalk

Before I continue, there's one titbit I need to fit in here. This is only for a very select group of people, so anyone else can just skip over this part onto the next, if they so choose. You won't miss anything of importance. The select group will know who they are, from the title. Though, I will write it as if I'm talking to a wider audience, so as not to exclude anyone that may be curious.

When I became pregnant with my third child, I felt a keen interest in finding like-minded people. So I joined a few pregnancy forums (message boards) which were quite popular those days. Facebook wasn't that big yet, Twitter non-existing, whatsapp non-existing, sms's still severely limited, no Telegram, etc. People like me sought each other out on forums. I joined a South African one as well. It was a small group, about 100 people, thus private, intimate and people who understood parenting in our particular country.

The first few years were amazing. Fun, lively and supportive. We grew so close, that we started to have “get-togethers”, where we'd meet up somewhere in real life. At restaurants, but later also houses. I myself hosted one such get together and it was really good. I loved those people. They were my friends.

Unfortunately, most people tend to go off in different directions throughout their lives, which is why most friendships don't survive too many decades. As people lost interest in babies and talking about their children, they lost interest in the group as well. Even though we were long past only being a baby- or toddler forum. Most had primary school and even high school children too. But people moved on. It was natural. But as few new people came in, our numbers dwindled. Down to 80, 70, 60....

In the end, there were only about 40-50 active users still left. Conversations became stale and repetitive. Some formed separate smaller groups which left them with little to no desire to converse with the rest, which left even less conversations for everyone to join in. It became a little bit of a sad place. So I too, started to “wean” myself off of it. I saw where it was heading. I kept in touch, of course. These people were my friends and I loved them. But at that stage, I still needed more. I was a stay at home mom and needed conversation in my life (at that point). So I went out and made connections outside of my home or the online world.

So days would pass where I wouldn't speak up on the forum at all. Then later, it would be that a week goes by. People noticed I was quiet and asked me about it, because I was one of the moderators and used to be a very prolific chatter with a lot of daily posts. So obviously, when I grew quiet, it was noticeable and people would query it. Being autistic, I have this innate INability to ignore a question. I almost always answer all questions. It's too hard not to. So I'd answer the queries about me, apologise for being busy, and then grow quiet again.

During that time, I was dealing with a lot of other things in my life too. I had huge family problems (not with my children or husband, but my own side of the family) that I rarely discussed much. 

On top of that, we were only about a year or two after my daughter's huge back operation. Things have not completely “settled down” on that front, and we were still in the midst of having a special needs child. With all that that entails. Every parent of a special needs child will tell you it's not something that just one day gets taken care of, and then it's all over and dealt with and sorted. It's ongoing. And other people obviously get tired of the never ending “issues” in the life of a special-needs parent. So I tried to not speak up about some of it any more, as I noticed that “tiredness” creeping in amongst some in the group. I never wanted to make the forum about me, but I missed some of the social cue's.

At that point the psychologist asked us to see a geneticist and a psychiatrist. For several issues, one being that they thought it's time to look into my daughter possibly being autistic. Something that was mentioned regularly by therapists throughout her life at that point. As was my habit, I thoroughly researched each investigative diagnoses of the specialists. So I was busy researching autism at that point. It was clear to me that it's a family problem. I have several family members that had the same traits and characteristics and I also noticed it in myself too. 

I should interject here. I thoroughly research something, I don't just jump to conclusions before investigating. And part of researching autism, is to do the online psychological tests, that's accepted by the Psychology Board as very indicative. These tests all showed my daughter as autistic, but it also showed me as having even much worse results than she did. I had more severe traits and the tests all said we were both most likely autistic. We also tested my eldest son, my husband and even 3-year old Monkeyman even though the children-tests are less conclusive. All of their tests showed they're definitively not autistic, though they are all introverts and thus might have similar traits here and there. But it was clear, in our family of 5 then, both me and Boeboe were autistic. As the psychiatrist, psychologist and geneticist later all agreed on.

Before I got that diagnosis (about my daughter being autistic, and later myself too), I was thus thinking and researching about all of these worries of the specialists. Boeboe was eventually given a host of other diagnoses as well, with the autism, which we had to deal with one after another for a number of years thereafter.

At the same time though, we were facing another horrendous process with my son, who was diagnosed with heart disease age 5. Once he was cured from it, they realised more was wrong and we tried to find the cause for another 2-3 years. It ended up being heart damaged, either congenital or due to the initial heart problem. This damage was permanent, irreversible and untreatable at that stage.

At that point though, we just knew that something more was still wrong, we did not know what, and were sent from doctor to doctor in a wild goose chase. With the resultant madhouse it usually creates for such parents and family. I was thus highly strung and stressed out, not knowing if my son would even live another year or not, as he was clearly deteriorating at that point, instead of improving as they thought he should. Having had a mother that died from heart failure didn't make it any easier on me.

So when someone on the Babytalk group asked me again why I was so quiet, I realised I haven't posted for over a month and I felt guilty. I was reluctant to reply though. Truly, deeply reluctant. Because I knew. My time there was coming to an end. But I owed the people on there. They were good people. Good friends. I still loved them.

So I thought. For one last time, I'll answer in full detail. Telling them what's happening in our lives, and what's on my mind, all my feelings about things, and the research I was doing and why. The suspicions of autism. For both my daughter and me (since we realised it was clearly a genetic problem on my side of the family). At almost 40, it wasn't easy to come to terms to being autistic myself at the same time as accepting that my daughter indeed was. It explained a lot, but it takes time to work through. I should've waited until after the diagnosis from the psychiatrist (which did came shortly after), but I didn't. So it was still assumptions at that point when I described everything going on in my life.

And so it blew up in my face. One person got fed up (with us always having new medical “issues” - and honestly, who could blame her? Even I got tired of the never ending issues and my own moaning about it in long, melodramatic, boring posts). 

She made some scathing remarks on Facebook. And a typical cat fight broke out. I didn't know how to fix it. So I apologised, said my goodbyes and tried to move on. But I had some really good, loyal friends still on there, and they blew a fuse because of the unfairness of it all that resulted in me trying to leave. It created a huge, clear divide and caused the whole forum to split up, blew up, and then died. Completely.

I was devastated that I was the cause of this. It was never, ever my intention. I didn't know how to fix it. I begged, pleaded, apologised, screamed, cried, was angry and frustrated, sad and apologetic and pathetic. I tried it all. Nothing helped. No one listened. They were all done. Some felt betrayed. That someone could take knowledge from the closed private forum community and splash it malignantly on an open environment like Facebook. They lost the trust they had discussing private things on the closed forum.

Some of the best friends I had on there created a whatsapp group and invited me. I joined, and this turned out to be such a blessing. For many years after this was perfect. We were a small group of friends. We again had a few get togethers. We loved, lived, cried and laughed together again. Daily. It was perfect. So very very good. It perfectly filled the void I was feeling. I would forever love those on that group, and be grateful for those years spent together.

During the final throes of the forum though, some things happened, which is the reason I want to add it in here (as part of my testimony). Many messages were sent to me. Openly, as well as privately. On the forum and on facebook (even though I never was really active on facebook much). Most of the messages were supportive. Many were not. Some were vicious. Some malicious. Some confused. Some sad.

But a few stood out for me, in particular from one person, living in New Zealand at that point. She basically embodied a certain small group's feelings, which is why I remember her. I think she was the “face”, their “spokesperson”.

They believed, and she thus accused me of having Münchhausen’s by Proxy and said I needed urgent psychiatric help before I cause more harm to my children. That's where a mother causes or wishes illness, disease or defects on her children and subject them to unnecessary medications, hospital stays and operations, tests and procedures, because she craves attention. And mothers of special needs children do get lots of attention from doctors.

To this day, I struggle to comprehend the accusation. Very few things, ever, hurt me more than that did, that day. Of all the things, they chose THAT to hurt me with. I was barely hanging on by a thread throughout all those difficult years from 2006-2016. Until we had all our “diagnoses” and could finally live our lives free of doctors and appointments and operations and new issues. I could barely cope with it all, especially not that year, when my son was so very, very ill and we didn't know why still. 

And then they used that. Accused me of that. The one thing all special need children's mothers say hurts the most. When people accuse them of that. When the very opposite is true. They hate, really hate, that their children have any medical problem at all, and would offer up much to change it all. 

I still sometimes wake up, drenched in sweat, because of some of the procedures I had to put my children through. Things they went through, that I can't even describe because I burst out in tears because it was so painful, so raw, so hard to watch your baby go through it.

I hated every operation, every doctor's visit, every test, every procedure. I hated seeing what the side effects of the different medications did to them. I feared the long term effects, and STILL do. I loathed to the point of being nauseated, giving them pills and medicines daily. I cried with them. After some tests, I stayed with them, watching them whimper in their sleep from the trauma they experienced that day, silently crying with them. 

So I despaired about all my children had to go through. I cried. I screamed. I yelled. I even showed God my fist at times, asking Him WHY? Why God? Why them? Why this? Why me? Why us? Why so painful? Why so much? 

I never, ever enjoyed any second of it. Not when doctors sympathised with me, nor when they laughed at me or ridiculed me themselves. Not when nurses hugged me because they had no words to give, nor when they pushed tubes down my babies' orifices while they screamed in terror. 

I didn't like the hundreds of therapy visits where I had to sit outside while a woman I didn't know away from that office, was treating my child. I didn't like the thousands and thousands that we spent and that cause my husband more stress than anyone can ever truly realised. 

I disliked all of it. Except the positive results my daughter got from being diagnosed and treated. So to accuse me that I, personally, was the cause of it all, that I chose to do this to my family... I still can't comprehend how little they truly knew me.

Worse even, was the fear that gripped my heart. We all saw movies or tv-shows where authorities were notified of a mother that was suspected of having this, and her children were taken away from her. Usually it turned out that it was a false accusation. So fear took hold of my heart... what if one of these people, who seemed to dislike me so much now, phone Childcare? Believing they have the child's best interest at heart. One phone call and I could loose my children. I was dealing with a lot of hardships those days, and they just added one of the worst ones ever, onto me. It took me at least a year to stop fearing that. The fear of getting that phone call or visit from a social worker because of a complaint. It was a valid fear, not just paranoia, from the way this woman from NZ structured one of her messages to me. How she feared for my children's lives and well-being. Which is one reason I wanted a testimony of it here. So that there is a record of it from my side.

Look. I clearly do have mental issues. I don't blame anyone for noticing that. The blew up occurred because I was rambling about that very fact! Admitting that I may not be what is considered "normal", or "neuro-typical". That my mind worked differently. And that it usually does went along with some other mental health diagnosis. I also had a history of trauma during my childhood years, which I never dealt with, which was at the basis of the family issues I mentioned I was dealing with during that time as well. 

Looking back, I displayed classic autistic traits during my years on the forum. Long, rambling posts overexplaining things, self absorption, even sometimes to the point of rudeness, inability to fully understand other people or their positions, narrow focus on my own problems, and the dead give away, my complete and utter obsession with my children's health. Not because of Münchhausen’s, but because autistics usually choose a field and study it relentlessly, until they come across as "know-it-all's" on the subject. In this case, my children and their growth and health, and my belief that I could help them get the diagnosis and therapies that I felt they deserved and that will help them. That focus and obsession wasn't Münchhausen’s, but very typical for autism.

So they had every right to get upset at me, to notice things aren't completely normal and healthy and working optimally on my side. I openly admit I needed help. I even went to see a psychologist at some point after that. The problem isn't that they noticed I was drowning and that things were going haywire on my side. But that they diagnosed me, without any true understanding of all the facts, and thus falsely accused me of being a bad parent. When my complete focus and goal was to be the best parent I could be.

I do not and never wished any ill on any of my children. And I never will. And Boeboe is the testimony today of that. She was diagnosed with what I were discussing in that last fatal post of mine on the forum. The treatment for it worked beautifully, and she received much needed help in a lot of areas in the years following. By age 16 she was finished with all of it, and concentrated on getting her matric, which she did with flying colours. 

She enrolled into a college and passed her first 2 years with some honors and is busy with the third and last year. She made friends and has turned into a beautiful, well-functioning adult woman. She still lives with us as the college is close-by, and she and I are as close as any mother could wish for. She's also exceptionally close to her siblings, and still helps to take care of her little sister, which she waited so long to have. She's also a typical daddy's girl and does nothing without his approval. She was thus never harmed by anything we did, just helped, and to this day she's grateful for all we've done. To this day, she's picking the fruits of everything she went through to get better. The pain, the tests, the appointments, the operations, the therapies. It all brought her to a point where she can now look back with gratefulness for all the help provided to her. So that she could have a full and normal life. She only ever expresses profound gratefulness. To us, to the doctors, therapists and nurses, and most especially, to God.

Another reason why this is part of my testimony, is so that people would be much more careful of doing this to other parents of special needs children. You would be surprised how many people use this as a stick to beat such parents with. How often this happens. I struggle to understand the "why's". Why would people do this to such parents, who are already on their knees daily. Fighting, crying, broken beyond understanding. Who kicks a wounded animal? Who kicks a wounded parent like that?

Then also, as I mentioned, this is part of God's assignment for me, to write my full testimony. The good and the bad, and for some reason, this must be included. Somehow, I guess He needs to reach someone through this, somewhere in the world. Someone, that went through something similar. To know they're not alone. And that it too, can be overcome.

So to get to the point. If I remember correctly, I wrote about 3 issues in that last fatal post of mine on the forum. That we believed Monkeyman still had something undiagnosed wrong, that Boeboe was autistic, and that she may have inherited it from me.

After the forum broke up, it indeed turned out Monkeyman had a secondary heart defect. My daughter was indeed diagnosed with autism, as well as with a host of other things she then had to deal with. The autism was diagnosed by a psychiatrist and psychologist and confirmed by a geneticist. It was determined she most likely inherited a genetic condition from me, causing the autism and many of the other diagnoses she received in her life.

So the final 3 things that broke the camel's back and caused them to accuse me of something as vile as Münchhausen’s by Proxy, was real diagnosable medical problems, and not fake "wish fullness" from me onto my 2 children. 

And if anyone still doubts, we have all the proof. We have the medical reports that showed our eldest's epilepsy. We have the records that our daughter was operated on for an occult tethered cord, and diagnosed with autism, a communication processing disorder and a host of other things from various specialists, therapists, tests, etc. We also have the printouts of our 2nd son's EKG's that proved the tachy-bradycardia and before that, the results of the sonar that showed pulmonary hypertension. None of it were caused by me wishing it on them, but by genetics. As confirmed by a geneticist. It never was Münchhausen’s by Proxy. 

So why this post, here, now, and so publicly? Because I was asked to write my testimony and include it as well. And because I needed to mention something about it, as part of it being my testimony of what God is doing and has done in our lives.

And to prove God's work, I need to point out something strange.

Why was my eldest son diagnosed with epilepsy at age 5, when that type is usually only diagnosed around age 12 or 13?

Why did they diagnose my daughter with a physical, congenital problem age 5, that lead to the much needed occult tethered cord operation?
Why was our third child diagnosed with pulmonary hypertension, an extremely rare disease, at guess what...... age 5?

The ages it started for each child. 555. The number for mercy, in triple format. Because that's what God is pointing out. It was all His doing. To show HIS mercy to and through our family, for HIS purposes. It was all God.

Guess when I was called through my very first prophetic dream by God? When I was: age 5. Coincidence? No. God!

He marked me and my oldest 3 children by the mark of His mercy. Even though I greatly rejoice in His Plan for my family, it also saddens me that I was scorned and maligned for it, and that I lost friends through it. But even more so, that my friends lost friends and were ostracized for standing by me. They did the right thing. And lost their beloved forum for it. That saddens me the most. That my deeds and issues cost them that. I can only pray that God will remember their acts of love and kindness and support. Because His Word declares when you've done it to one of His Children, you've done it to Jesus Christ Himself.

So what about our 4th? To me, it's proof that I never wanted to harm my children. Because we had one baby that had very few diagnoses. Apart from the family Gilbert's and GERD (with resultant bad teeth), and her father's migraines, she's perfectly healthy and normal. No autism. No epilepsy. No heart disease. No tethered cord. Just a normal, happy and extremely healthy little girl that has never even seen a GP in her whole life of 12 years. Healthier than any other child I know of. Never had an infection that needed anything else than over the counter treatment. An absolutely astonishingly healthy child.

Why? My guess is that God completed the process after 3 cycles. 5 and 5 and 5. Triple mercy. He took the age 5 that my dreams started, and tripled the mercy through my children. And with little Peanut, our fourth, He has very different plans that He has shown to her and me through dreams and visions already. Her path is very different from her siblings, thus her life experiences needs a different path.

I can now let it go. The hurt, the pain, the false accusation that almost cost my son, because I wanted to stop looking for answers. Only by the Grace of God and the encouragement of my husband, did I go on and we found the answers he needed, as to what was still ailing him.

It's done now. Water under the bridge. I've forgiven all. I don't wish harm on anyone. Quite the opposite. I hope they live in peace and happiness and that God will bless them and their children with health and love and safety.

To them, and more especially, the rest of the people who shared my life on and through Babytalk:

I want to thank you. I'll always cherish those years in my heart. I still miss you guys in some corner of my heart, and always will. Because you were all special. Thank you for the support and love you showed me and my children.

And especially for being part of my journey with Boeboe, and carrying me through the struggle to get a diagnoses, and then her operation. For the gifts you send her and even to my other children as well. To this day it is precious, golden memories for all of us. I can never, ever thank you all enough for the love and care and support showed. I will always love each and every one of you and remember the GOOD that came from it all.

A special thank you for those that shared life with me on the whatsapp Babytalk group afterwards. It was incredibly special years. I sometimes miss you guys so much that my heart physically aches, and I hope you will all one day understand why I had to leave. It was what was needed at that point. I love you all.

May God bless each one of you and yours abundantly. May His Light shine brightly on you, and may His love and peace always surround you and your loved ones.

Continuing here...