Forth time lucky!

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Sol has an older sister. Her name is Jazz and she is eight years older than him. “That’s quite a gap!” – I get that a lot. I was 34 years old when I fell pregnant with Jazz. Is there another way to describe “falling” pregnant that doesn’t have a negative connotation. The “falling” feels like getting sick, dropping out of life or maybe I just think too much! Getting pregnant and being pregnant was a breeze. I was fit and continued to exercise and teach group classes right up till 8 months. Granted this was some time ago and living in Malaysia, I would often get comments of concern or suggestions that I NOT lift those weights/ride that bike/go for that swim. I distinctly remember a disgusted club member walking away from a class I was about to teach after asking me if I was going to be the instructor that day. There is so much irony in this as the ladies in the rice fields of Vietnam or Bali are working up till D-day, pop out the little one, strap them on their back and carry on without blinking an eye.

Jazz was an easy, happy and social baby. I was working and traveling and she came with me and our amazing nanny, Tina. Three years pass by and we began the discussion to add to our family. I was 38 years old and it might be a good time to try again before the big 4-0.

I got pregnant quickly again and at 6 weeks, just as quickly miscarried . That sucked but then I was quite pragmatic and accepting of my age that this might happen. I recovered well. I was pregnant again within the year and things were going to plan. 9 weeks and another miscarriage. Needing a D&C this time, which made the whole situation a bit more dramatic and drawn out for recovery, both physically and emotionally. But I did recover and we were determined to keep trying. However, my body didn’t “reset” and the monthly cycles never came.

I was studying for an MBA at this time and I was on 6-week cycles for papers, assignments and exams. Every 6-weeks after a unit, we would have a 3-hour exam and then straight after start learning the next unit. It was really full on but I relished the learning.

I had my “Carrie” moment half way through the Marketing exam. I distinctly remember writing about Lance Armstrong and his “Livestrong” project when it felt like someone had dumped a pail of warm water on my nether regions. I looked down and was horrified to see that I was bleeding, just like that bloody movie! I was wearing a pair of jeans and I had a dark jacket which I quickly wrapped around my waist. I was also sitting right up the front of the class and the exit door is at the back. I started to shake and then I  started to process my situation. Do I feel sick? Dizzy? Do I think I can keep going?

I called over one of the administrators and quietly explained the situation – I had had some surgery 12 weeks back and it looked like I was bleeding heavily. SHE (yes, some respite, it was a SHE), asked me how I was feeling, if she could escort me to the bathroom and once we were outside, she asked me what I would need and if I wanted to postpone the exam and resit another day. Since I had managed to comfortably walk outside without any side effects and I wasn’t feeling any worse, I asked her to help me get some pads with reinforcements and I would attempt to finish my exam. And I did – I finished the exam, continued to bleed, calmly walked to my car, called Dave and then drove to the hospital. Verdict? Retained product of conception – basically, the D&C did not remove all the “product” of the last pregnancy and my body thought it was still pregnant and continued to act as though it was nourishing a new life. A blood test confirmed that my pregnancy hormone levels had not dropped and were present in my system. So, in for another D&C (insert expletive). And more recovery time and another year passes.

My body DID reset itself and I was pregnant again – on my 40th birthday. I celebrated my birthday in Bali with friends and family and a small 10 week baby bump…..and no alcohol. But we had an amazing time.

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Due to my advanced age and that I was now a “geriatric pregnant women”, I had to undergo all the tests plus some. My blood test at 8 weeks indicated that I had a 1/50 chance of a chromosomal issue so I was promptly booked for a amniocentesis at 14 weeks. I mean, come on! 1 in 50 chance of a problem? That means 49 chances that everything is OK right?

Dave and I went to the appointment for the amnio. Our gynae prepped me and then started to search for the heart so that the needle would be in the right place to extract fluid. A few minutes pass and she’s not chattering away like she normally does. I know it before she tells me – no heartbeat. My first thoughts are not of me or the baby but how horrible it must be for our doctor to have to tell us that the baby has died. She looks disappointed and I feel like I’ve disappointed her for the third time – 2 miscarriages and now this! Dave and I hold each other and cry and she leaves us in the room. I am so grateful he is there. Through the shock and pain, we manage to pull ourselves together and sit with the doctor to discuss how this could have happened. Of course, I’ll need another D&C and I requested if we could find out “how and why” our baby died. She confirmed that they would be doing tests. To cut to the chase on the test results, our baby had the chromosome for Downs Syndrome. DS has a spectrum of severity and for a baby to self-abort, this indicates that they were on the spectrum for the most severe. How does one process this information? This is very personal and this is how I did it.

I do not ask myself if I knew I was having a Downs Syndrome child, that we would would continue with the pregnancy. That question and decision was removed for me when our baby died. And that is the only pain I have to live and deal with. I have a greater amount of empathy and heart for those parents that actually do need to make a decision on whether to carry on with a pregnancy when they know their child will have major life challenges. I have NO judgement for those who decide that the burden may be too large, for themselves or for their other children, if they have any. This was my greatest lesson through my experience. I can not and will never judge another persons decision to keep or abort. I do not make any political or moral statement here because this is not about politics or right and wrong – this is about MY life experience. And this was one of the most painful experiences I have gone through. So at 40 years old and not sure if we will or can have another child. Oh, and he was a boy….

I had a bad knee. It was time to fix it. I was still young and I could recover well if I got on with it, rather than wait till I was closer to 50 or 60. I had an ACL replacement and stem cell injections to rebuild the years of cartilage damage I had inflicted through running long miles and jumping repetitively. The surgery went well and the rehab was aggressive – 4 hours per day, every day, for 6 weeks and then I could start hydrotherapy. I was 8 weeks deep into the stem cell injections when the thought crossed my mind that I could be pregnant. When you’ve been pregnant a few times, you get attuned to that niggling thought and that strange sensation in your body that you might be “with child”. Before I took a pregnancy test, I went out for dinner with my fellow stem cell buddies (all of us on crutches!), had a glass of wine thinking it might be my last for a while and then hobbled into the pharmacy to buy a pregnancy test. Didn’t sleep well that night.

5.30AM – Pregnant. At 42. With crutches. My heart wouldn’t stop racing. This was crazy!

I changed doctors. I couldn’t stand the thought of going back to my previous doctor with the history and fear we shared. My new doctor looked through my history and put me on progesterone injections. I was referred to Dr Ramen, a lovely older doctor who specialised in advanced maternal pregnancies at FGMC.  Dr Ramen assured me that 42 years old was fine and that my history did not necessarily mean that this pregnancy would end badly. My blood test came back at 1/250 this time – a good sign. And I was able to have a CVS at 11 weeks. This meant that before my first trimester and before I told ANYONE we were pregnant, I would know that our bubs was going to be OK and the pregnancy would be viable.

Dr Ramen called me with the results as we were traveling to Bali for our summer break adventure. He confirmed that our baby was genetically fine and that we were having a boy. I cried with relief on the way to the airport and committed to doing all I could to ensure a healthy pregnancy.

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Sol was born on 30th January 2013, 8 years after our beautiful daughter. The pain, heartbreak, surgeries and healing have long been forgotten when he smiles at me. Sol has healed my soul and has entered our lives to teach all of us a new way to view the world. And while life with Sol is not as easy as it is with neurotypical kids, I would not change a thing.

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Friday Feels – Putting the Brakes on

Early morning – check my phone – message: “Looking forward to reading your next blog post today”. Gulp.

It’s Friday and I’ve committed to writing a post – every Friday. And all week I’ve been thinking about what I should write about today. Should I carry on with “what happened next” in Sol’s journey? After reading last week’s post, I felt overwhelmed by all the technicalities of having my 6-month old baby have a brain scan. And explaining what happened and the results felt incredibly clinical.

This week, I have received “I wish more parents were like you” about 3 times.  You’d assume I’d feel a bit chuffed and proud of myself when I receive this affirmation but I want to assure you, none of that statement makes me feel like I’m kicking ass as Sol’s mum. I feel happy for the specialists that confirm it because I can see how frustrating it can be for them to try to help parents that are in denial about their child’s needs. If I am ONE parent that takes on board their professional opinion and implements it for the benefit of my child, then we are all making the world a better place and making a difference to a special soul – my Sol!

So Friday morning, I’d just worked 60 hours in 4 days and I was feeling pretty smashed. I booked for a facial after a long hiatus, and lay down to receive my “selfcare” (it’s the new buzz word you know). “What am I going to write about, what am I going to write?”

And then the tears came. There is something incredibly therapeutic about having someone touch me, whether it be hair, massage or facial. It feels like lying down and human touch brings my thoughts and feelings to the surface. So todays blog, instead of a clinical breakdown of Sol’s diagnosis and journey, is about being a parent of an SEN kid. This is the first time I’ve also written that Sol has SEN – Special Education Needs. Another “box” to compartmentalise the fact that he doesn’t sit in the 90% of a failing education system – oh wait, gotta put the brakes on, can’t write about that in this post.

This post is how I feel about the incredible journey I am blessed to take with Sol-man and those loving people who have knowingly and unknowingly decided to come with us. To put this into context, a little about me, Sol’s mum.

I’m a Kiwi, born in New Zealand, neurotypical (jokes on me), sister, dancer, athlete, high performance student. I studied Physical Education at the University of Otago and went into the fitness industry just as Madonna made “Personal Trainers” a thing you needed. So I have an in depth understanding of how the body works. I also took some papers in Sports Psychology and Nutrition and these have served me well across career and life. New Zealanders are the most self deprecating people I know – down to earth, not dramatic, creative, friendly. We love the outdoors, physical activity, sports, beach, barbecues and good belly laughs at the expense of each other, usually close family members. This culture and upbringing has given me some of the qualities to help navigate a future amazing life for Sol. I have a good “bullshit reader” on people – I can pick a fake a mile off. I don’t take myself too seriously but I can prioritise the things and people in my life that are important. I’m loyal – to my family and those who take the time to get to know me. This is the moment that the tears came during the “face mask” – I thought of those special people who send me an sms or kind word every few days to encourage me to keep going, keep advocating for Sol, keep my head up. It tells me that even when I don’t see them, they have me in their thoughts. That kindness…..I can’t even. (Means, I have no words).

And I guess the way I “present” myself to the world at large indicates that I am a woman that knows what she’s doing and knows how to get there. And in some aspects, that is true. If I think about how I might be perceived – organised, go getter, stoic, driven. They are all admirable qualities but the quality I have most harnassed the past few years, is EMPATHY. Because this quality is what gets me through all the challenges that I have experienced. And all the people that have shown empathy (not pity) for me and have allowed me to reciprocate, have helped me grow the most as a mother, wife, friend and person.

It’s getting kind of deep and I want to bring this back to Sol and so I’ll frame how EMPATHY has best served me. In my journey to investigate Sol’s unique view of the world, I’ve been “friended” and I’ve “befriended” many parents in the same circumstances. After this post, I may even be “unfriended” – lol. We are all learning about our kids and what they need to be the best humans possible. We are all battling an education system that demands we pay “extra” to allow our kids to sit in a mainstream class environment without accepting they need to step up too. We are all sharing contacts, information and insights into the latest therapies, education, tutors, playgroups, etc. This group of enlightened parents has been a God-send. And my empathy for those parents that are struggling to gain a diagnosis so they can help their kid move forward – three words – Don’t. Give. Up.

And there are parents that deny that their kid is unique. I’m using the word “unique” pretty loosely because I don’t want to say that having a learning challenge or social challenge is a negative thing. When it comes to dyspraxia,  Daniel Radcliffe and Florence Welch have done pretty OK with it. The denial is two-fold.

1.The desire to have their kid “fit in” to what society deems as “normal”. That they can read at an acceptable level, can do math, can write, can play sports.  And that’s pretty much it! These parents want their kid to have a “normal” school life, to be in a normal classroom with 20+ other normal kids and that some of the “normal” might rub off on them and then we can all breathe easy and maybe no one will notice that said kid has some learning challenges until they start to act out and then get the label “bad kid” and next thing you know they are standing on a roof ready to jump!!!! Did I say Kiwis weren’t dramatic???

2. EGO – yep, I said it. Ego is that little voice that says “You’re not good enough” or “You’re better than everyone else”. Ego also tells you that if your kid is acting up or not succeeding in society, that you are a “failure”. Ego also turns up the dial on what “everyone else thinks”. Ego sounds like this – “What will XXX and XXX think if they know my kid needs to have speech therapy”. “What will THEY think if I take my kid out of school?” “What will my parents think if I want to get my kids some extra support?”.

Once you can put your own ego aside, not worry about what “everyone” else thinks and go with your gut feeling that your kid needs some support, the journey gets really exciting. And I mean that! I’m excited about the people I’ve connected with, the information I’ve learnt, the support I’ve been given. And I’m most excited that I might just be the next “Harry Potter’s” mum.

I have huge empathy for those parents who need to navigate through societies turned-up speaker on why “normal” is BEST. I look forward to their break throughs when they realise that there is a whole world of help, support and love ready to bring them into the fold and help them create the most amazing world for their unique child. I am a product of this support and love and today’s tears during my “scrub and serum” was an acknowledgement that I am not alone and I am blessed by an incredible support network for whom I could not do what I am doing for Sol, without them. Special thanks goes out to Steve Jobs who, without his bucking the “normal” system, I would not have this lovely laptop to share my thought’s through. Peace Out.

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