Monday, May 21, 2012

To Italy-To Holland-To Nowhere (our Charlotte May)

For some reason, the two year mark is harder than one year. I'm yet to figure out why.

I have been putting her story together....

It has been hard to write because..... I can't change the ending.

I found out my baby had Down Syndrome one day before my friend Lisa posted this blog post on Holland and her beautiful son Noah. It is an analogy about having a special needs baby and about planning a trip to Italy but the plane ends up landing in Holland instead.

At that time I had not yet told Lisa about our baby's diagnosis. I was waiting to see her face to face and not over the phone. I knew that when I looked into her eyes, her compassion and understanding would help ground me and quell my fears of landing in Holland. And I needed that, oh how I needed someone to tell me it was all going to be okay, that Holland was far from a bad place, maybe scary at first, but that it could in actual fact, be far more lovelier than Italy.

On the 19th of April 2010, I was 12 weeks pregnant with my fifth child. The first 12 weeks had been non-eventful. The usual morning sickness, headaches and tiredness but nothing out of the ordinary, no neon sign with an arrow pointing to my belly, saying baby with extra chromosome inside. I even bragged to Simon that I was so lucky to have had five pregnancies and five babies and no miscarriages. Now I was at the 12 week mark, it was a home run right?

That morning at 10am I was scheduled for a CVS (chorionic villus sampling). I was having genetic testing done to test for the presence of CAH (Congenital Adrenal Hyperplasia) Our second  child Hallie has it and our last-born Flynn, and every pregnancy since Hallie, I have had to have a CVS to find out if the baby also has it. If it does, I stay on a drug that won't prevent the baby from having CAH (as it is genetic) but it prevents the need for surgery in girls. Every time we have a baby, there is a 1 in 4 chance of them having CAH. Hallie and Flynn both have it and as long as there is management, monitoring and medication every 8 hours, they can lead a life along the same lines as people who are not missing cortisol and aldosterone. For the record, this baby did not end up having CAH.

On this day, I went to the office of Dr S, a specialist obstetrician, one of the best in performing CVS in Tasmania at the time. We greeted each other more warmly than usual because this was the third time, she was performing this procedure on me, the last one with our fourth child Jonty, just 2 days after giving birth to her own child. As it turned out, this CVS was done just one day before Jonty's CVS, two years earlier. I told Simon that he should come along as it was very interesting to watch and seeing as this was our last baby, it would be nice to have him there. I think with me just turning 36 in February and our fifth child, we thought this was our last child.

The sonographer told me to get up on the table and she would bring the baby up on the screen and make sure it was in a good position for Dr S to come in and start the procedure. She put the cold gooey gel on my tummy and I turned to look at the screen. Simon was siting beside me in a chair. She magnified the screen to get a good look and do some measurements and then she stopped and said, "woah". I immediately thought, "that's not a good woah". She was measuring the fluid on the back of the baby's neck and it measured at 6mm. Even just by looking, it looked unusually thick. The fluid at the back of the neck is called nuchal translucency and it normally measures up to 2.5mm. The fact that our baby's was 6mm put it even outside the abnormal range. The thicker the measurement, the more likely it is that something is 'wrong'. So it was abnormally abnormal. I started to feel sick and panicky inside but kept calm and still on the outside. The sonographer told us that Dr S would explain what that might mean when she came in. Meanwhile our beautiful baby kicked about merrily on the screen.

The sonographer went out and chatted to Dr S and she came in and looked at us and said, "this probably means one of two things, your baby has down syndrome or she has some issues with the heart." I asked her if there was a chance it was neither and she said there was a 1 in 2 chance that our baby had Down Syndrome

The only way to be sure of course was genetic testing. Dr S said that if I wanted to, we could use some of the cells we were drawing from the placenta to test for CAH, to also test for DS. It takes 5 weeks for the test results to come back for CAH as the sample is sent to Melbourne to be grown in a petrie dish but the fish test for Down Syndrome only takes 48 hours. "Let's do it", I said. The procedure went smoothly, Dr S commenting on what a good sample they got as she gently eased the needle (knitting needle I always called it) in and out of my abdomen. As she finished, I asked her again whether there was a chance at all that my baby was going to be healthy. She glanced at the sonographer and I knew in the look they exchanged that they didn't think so, but she said, "a small chance yes".

I held it together, I always do in public. I leave my crying, my heaving hiccupy sobs for the shower by myself. I knew I was going to run the water out that night. As soon as we walked out of the ultrasound centre, my eyes filled with tears and I said to Simon, "I don't want a dud baby". Oh now even as I write this over two years on, I cringe with guilt and it breaks my heart that I said that. I still beat myself up and say, "oh what a dud Mum you were to think and say that". But that's the truth of it, that's the first thing I thought.

Over the next two days I ran with that "a small chance yes" and talked myself into the baby being fine and healthy. Simon was going on a search and rescue training session from Tuesday to Thursday and I told him to go, that I would be fine, that him going, showed that we had the faith that everything would be okay. Looking back on those 48 hours, I KNEW, deep down I knew that our baby had Down Syndrome. Every time I talked myself into we were having a healthy baby, my stomach would plunge and I would feel like I was going to throw up and then I would give myself little self-talks, pep talks like, "she said 1 in 2, that means 50% chance that the baby is okay". I googled nuchal translucency and worried myself sick about what exactly 6mm meant. I looked at all the stats. What were the chances of having a baby with Down Syndrome, at my age  -1 in 250. I had more of a chance of having a baby with CAH, 1 in 4 which equates to 1 in 14,000 in the population, but I had completely forgotten about CAH, the reason for the CVS in the first place.

I look back on myself over those two days and I weep. I weep for the person I was, for the ignorant and scared woman who worked herself into such a state of worry and fear, who did not eat or sleep much, who spent the entire time just plain freaking out. But at the time, that's all I knew.

On Wednesday the 21st of April, I spent the whole day with my mobile phone right by my side. Every time the phone rang, I thought I was going to throw up and then I would answer it and it wasn't Dr S.  Around lunchtime, the hospital rang and asked me if I would come and see Dr H the next day. Dr H had been at the CVS and was the public obstetrics doctor that I would be seeing during my pregnancy. They aren't normally present at a CVS but Dr H was getting some hours up for one of her rotations. I was torn between thinking, "she knows and the baby has DS which is why she wants to see me" and "she just wants to follow up on my little scare". I had visions of us sitting there there the next day, wiping our brows and saying, "phew that was a close one".

By 4.50pm, I couldn't handle it anymore and I rang Dr S's office. The receptionist told me that she was busy in theatre for the day but as soon as she was in the office, she would ring me as the results were in on her desk. Irrationally I wanted to jump in the car and run down to her office and barge in and snatch them off her desk. At 5.15 pm the phone rang. I went into my bedroom. I was home alone except for the kids playing in the lounge room. I sat on the bed and looked out the window and took a deep breath. I still remember Dr S's exact words. "I'm afraid its bad news". "The baby has Down Syndrome". My voice started to tremble as I replied, over and over, "right, right, ok", like repeating the same words would help it all sink in. As an afterthought I asked, "and the sex of the baby?" "A girl". Next Dr S asked me what I wanted the next step to be. It took me a moment to figure out that she was asking me whether I wanted to terminate the pregnancy, which to me meant, terminate my baby. Through my haze of shock and numbness about her diagnosis, I all of a sudden spoke with strength, firmness and clarity when I told her that there was nothing to consider, I would never consider an abortion, not ever.

At this time Simon was still on search and rescue training and I couldn't reach him by phone. He was planning to use  a satellite phone to ring me if he was out of range. I sat on the bed and cried and cried and cried. I cannot begin to describe the feelings surging through me. The pain, the grief, the fear kept washing over me in overwhelming waves. I rang my Mum. She didn't even know I was pregnant as I wanted to surprise her. She was at school, probably just heading to a staff meeting and I just blurted it out. "Mum, I'm pregnant, its a girl and she has Down Syndrome". My poor Mum, being burdened like that all in one go. To this day I can remember her drawing from some inner strength and calm while her daughter blubbered on the phone, and telling me that everything was going to be okay. She even told me about two beautiful children she taught at her old school who she had a soft spot in her heart for, because they were so special.

I didn't hear any of that. I was still reeling from the shock of being 'that family' who has 'that baby'. To this day I don't know why I did this but I decided to still take Sarra to her basketball game which was at 7pm.  Maybe if I did something 'normal', I would feel normal. I loaded the 4 kids in the car and we went to McDonalds before the game. Everytime I walk into this McDonalds now, I look at the exact chair I was sitting in when Simon rang, having finally been able to get through and I told him that we were having a baby girl and yes, she had Down Syndrome.

Simon was completely taken by surprise. He was so sure that the baby was going to be fine, in fact he felt we were having a healthy baby boy. (At the time we didn't realise that our journey would end with a baby boy, in Flynn) I don't know what Simon went through that night, out there at the Walls of Jerusalem, in a tent with his own thoughts. He is very calm and strong in the face of trials, it's what makes him a good police officer. He is like a shining beacon in the midst of the worst day in some people's lives, particularly when it involves serious car accidents. But this was different, this was his own family, his own baby girl. He accepted things more easily than me but he did spend that first night trying to get his head around how things would change for our family.

I can't remember who decided that I shouldn't be alone that first night but my sister Collette rang from Hobart and she drove up that night and was waiting for me when I got back home from basketball. My good friend Kit also came around with tim tams, after my Mum had rung her and we sat in the lounge-room, trying to process the news. I will never forget what Kit said to me. She said that I would love this baby, that I would probably love this baby, not more than my other children but more intensely. She said I had had my time raising 'normal' children and now it was my time to do something different. Oh how wise. How did she know. How did she know that I loved my baby girl before I knew that I loved her.

It was comforting to have my sister sleep in the house down the hall from me and surprisingly I got some sleep. The next day we dropped Sarra, Hallie and Oliver at school and we took Jonty in to the appointment with Dr H. In her office she told us how she got the results at lunch the day before. Wow, I thought, she knew this life-changing event before I did. Dr H was very good and gave me lots of time to ask questions while Collette followed curious little Jonty around the room. One question I did ask that haunts me is I asked what the likelihood of miscarriage was and added that I was confident that I wouldn't miscarry. I was already accepting that this was obviously my purpose in life, to raise a daughter with special needs and give her all the love in the world and more. At the same time as struggling with this change of flight path from Italy to Holland, I also felt empowered because I didn't have to wonder what my role on earth was. Now I knew.

It didn't stop the fear and stress though. It was almost like I had to go through the refiner's fire, to bare every ugly facet of my pain and selfishness, before I could move on. To remember some of the things I thought, makes me cry with shame and cringe to this very day. And even though I know it is a normal  for many Holland expectant Mums to pass through, I want to knock the April 2010 version of myself over the head with a brick. When I found out about our baby, one of my first thoughts was to pray to God to take my baby away because I felt I wasn't a good enough mother to raise her. I felt inadequate. I saw other Mums with beautiful kids with special needs and they had this inner strength and something about them that I thought was obviously a prerequisite to raising such kids, something I plainly thought I didn't possess. I told my friend Lisa that I was glad she was due in November because the weather would be warm and I could put the sun shade over the pram and noone would know that I had a baby with Down Syndrome. I also told her she could take good photos of us and our baby and make our baby look nice. I was horrified that we would be labelled as that family of blonde kids with the Down Syndrome one. I remember saying to Simon, "well there goes any holiday on our own". I wrestled with all those demons, about how as soon as people would look at our baby, they would know from her physical features that she had Down Syndrome. I spent hours trawling the net, looking at images of kids with Down Syndrome, making comments to Simon like, "she looks quite mild" or "she doesn't look affected much" "you can't tell much with this one". "Maybe ours will not look as down syndromy too".

But you know what. It was all about me, about how all of this was going to affect me. I thought I was having this less than perfect baby and I needed to hide her from the world because I was afraid what the world would think. A beautiful friend gave me a book to read, called Bloom by a lady named Kelle Hampton who has a two year old daughter with Down Syndrome and much of the initial pain she went through when her daughter was born, I read and smile and cry as she records my feelings When she wrote, about freaking out about taking her baby into the grocery store and hiding her in the baby sling she said, "it wasn't so much that I wanted to cover her as I wanted to cover myself".

 I knew exactly what she was referring to. If you asked me the same thing today, how I would react if our baby was here still and I was on my way to the grocery store for the first time, I would tell you that I would be exactly like King Mufasa in the Lion King as he proudly lifts Simba up high above his head on that huge rock for all the kingdom of animals to see. That would be the me of today.

I cannot pinpoint the exact moment my mind and heart shifted away from thinking this was a burden and more that this was a blessing. It may have been when my naturopath said, "if God wanted to send you an angel, would you say no". It may have been after the endless reading of information on Down Syndrome and of the support group set up in Tasmania. It may have been the soft words of support from the physio at St Giles where I was taking Jonty,  or the understanding love from my family and friends that I would soon find peace with all this and that yes, burying your head in the sand and not talking about it, doesn't actually work.

There was a girl in Sarra's class at school, who had Down Syndrome.  She had blonde hair. When we first found out about our baby, I saw her at school in the classroom and I started crying and I ran from the school so noone would see my tears. I would see her everyday at school and I would will myself not to look at her as the gut-wrenching pain would sear me when I did, but I couldn't help it. I would be irresistibly drawn to staring at her, looking at my future. As my love for my own baby grew, I would stare at her for a different reason. I started feeling this seed of protection and love for a little girl I did not know but had the same genetic make-up as my own. I would ask Sarra if she had any friends and if anyone was mean to her because I was already mapping out how to surround my own little girl with a bubble of love so noone could ever be mean to her. Sarra was very matter of fact, answering my questions on whether she could take her self to the toilet or could speak properly or did she wear hearing aids. Both Hallie and Sarra were my inspiration, my example of unconditional love. When we told them that we were having a baby like Sarra's schoolfriend, they didn't miss a beat, didn't even seem phased, telling us that, "it's ok Mum, we will help teach her to walk". I knew that our baby was going to be very much loved and very possibly spoiled.

I remember a defining moment standing in the gym carpark with my close friend Lisa. At the time, her beautiful son Noah was eight years old and had a condition called hydranencephaly. He could not walk or talk and was fed through a tube. I asked her if she had a choice again right from the start, would she ask for Noah to be born 'normal'. She replied, "no, because it wouldn't be Noah". I didn't understand her answer at the time, but when I did, after our baby died and I was telling Dr H that I just wanted my baby Charlotte back and she had to have Down Syndrome because it wouldn't be Charlotte if she didn't, it finally dawned on me what Lisa had said and it made me cry as I recognised how special Noah really was and how my own special perfect child had quietly slipped away before we had properly met.

As the weeks passed by, and we were coming up to the one month mark of finding out about our baby's condition, Simon started talking about naming our baby. It seemed like the perfect thing to do, especially as the shock was wearing off and I was in a 'bring it on' frame of mind and researching and preparing myself for dare I say, this new exciting chapter in our lives. We settled on Charlotte and Charly for short as we both agreed that she would be cheeky and Charly would suit her personality. We still hadn't told many people as I wanted to be fully prepared when we did and ready to tell people to not to be sad for us, but to be happy for us, be happy for the privilege we were going to have. We were talking excitedly about how Charlotte would change our lives, how her child-like love that would always be present her whole life, would teach us all so much about love and affection, how our other children would learn so much about having a sibling with special needs,  lessons that would make our children better more beautiful and accepting adults. We were in a good place. Simon had given me a blessing and had said that the baby "will grow as she should". I took that to mean, we were well on our way toward the end where I got to hold my beautiful little baby daughter and examine her cute little body for extra chromosome telltale signs because now I was lovingly curious about what she would look like.

On the 20th of May, I woke up around 6.30am and went to the toilet. There was blood on my pants. Not a lot but enough to ring alarm bells. Having never bled before in a pregnancy, my heart plummeted and I had that familiar stomach churning feeling. I got dressed and went into Emergency at the LGH while Simon got the kids to school and was to follow in with Jonty. In Emergency I told them I was 16 and a half weeks with some bleeding. Because I was over 12 weeks, they sent me straight up to labour ward. On the way, I started having a really bad feeling that things were looking pretty bleak. The bleeding had stopped by then but it was like once again deep down I knew something was wrong. On the way up, Simon rang me to tell me his Nan, Sheila May Triffitt, had just passed away. It was like a bleak dark message, a forerunner, that this day was going to get a whole lot worse.

Up on labour ward, I was ushered down to what I now know as the 'death room'. Nicknamed so because it is away down the hall a bit, is bigger with a double bed and more private for reasons that were soon to become obvious. I sat in a chair and waited for about half an hour. There was no bleeding and at no stage was there any pain, nor any back pain. I should have been comforted by that but whether it was because of the news of Nan T or because I just knew, I felt so so sad, so sad that I was almost emotionless. A doctor came in with some student doctors and a little mobile ultrasound machine.
Just as he was putting the gel on my tummy, Simon came in with Jonty and we locked eyes and I know Simon could see the fear in them. The gel went on all cold and we all looked at the screen. I didn't want to because I was so scared to look. I knew that not looking, not knowing still gave me hope that our baby was okay. In that split second as my eyes flitted to the screen, I knew she was gone. She was just lying there and as much as I willed her to move as much as I said, "please sweetie stop pretending to be asleep and move for me, please please", she didn't. I knew that the doctor knew. I knew that the student doctors knew. Noone would look at me. The doctor said, "I am so sorry". He said that later in the day he would organise a proper ultrasound down in radiology to check the heart beat,  "to be sure".

Sure enough down in radiography, it was made clear as the sonographer did a heart trace, that our baby was gone. It hadn't just happened that day, maybe a week earlier. I was tormented with thoughts of what insignificant thing I was doing when our baby died and I didn't even know.  Our special little girl, my little miracle, who had become my whole world, was gone. Just like that, the journey was over. I hadn't even stepped foot off the plane into Holland yet and it was over.

After the ultrasound, I went around to the pregnancy clinic, passed all the pregnant women and sat in the office with the doctor from that morning. I was numb and in shock and so so tired. I wanted this nightmare to be over. I wanted to go back to yesterday where I thought I was still pregnant. I wanted to go back to starting to feel the tiny butterflies of pre-kicking in my tummy. I looked at the doctor as he was telling me something and it wasn't until I asked him to repeat what he said that it sunk in. "She is too big, you will have to come back tomorrow to be induced and deliver her". Hello - Freddy Krueger had just arrived in my nightmare.

So here we arrive now to the next morning, the 21st of May 2010, exactly two years earlier from today.

At 9am Simon and I went up to the labour ward and settled into the 'death room'. I naively assumed that once I was induced it would take maybe 2 hours and then I would go home. The midwife informed me that sometimes, the baby doesn't come until the next day so to settle in. At 10am, I was induced and I waited for the first signs of discomfort, the first niggling contraction. Part of me wanted to get the delivery over as soon as possible because it was breaking my heart and I was so scared at the prospect of delivering my dead baby but at the same time, I didn't want to let go of Charlotte, I didn't want her to leave my body. I wanted to remain connected to her, the only way I knew how and that was with her safely in my tummy. But now my womb was her tomb and I had no choice.

At about lunchtime, Simon and I headed over to the cafe across the road from the hospital. It was so strange sitting there eating a sandwich. Inside my head I felt like I was doubled up in pain, but outwardly I was going through the motions of calmly eating a sandwich. Inside my head I was screaming at everyone, "don't you all know I am hurting the worst I have ever hurt in my life, because today I have to give birth to my dead baby". Outwardly I calmly sipped my hot chocolate. At about 3.30 pm, Simon went home to get the kids from my neighbour where they had walked after school and get them tea and bathed ready to take to my sister-in-laws for the night. Nothing had happened so the midwives had given me more induction drugs. At 5pm, Lisa popped in to see me as her and Aaron were visiting Aaron's Dad. I smiled bravely, feeling anything but, but I was buoyed by her love and support. Sarra's friend's Mum, a good friend and midwife who delivered Jonty, popped in at the same time with a fresh bunch of beautiful flowers, made even more beautiful as they stood out against the drabness of the room. As soon as they left, the niggling discomfort I was feeling turned into methodical rhythmic contractions. Simon was still on his way back into town so I sat in the room on my own looking out into the black night sky through the window, mirroring the blackness of my heart. The midwife came back in and asked me if I wanted any pain relief. They had even offered an epidural but strangely enough, I wanted to feel every bit of pain, every contraction because as much as I was going to miss out on my daughter's life I sure as hell wanted to be fully present for every second of her birth. The contractions started getting really uncomfortable, I was pacing and breathing through them and I then decided that I would have a bit of morphine, more to relieve some of the emotional pain I was feeling.

It was now just after 7 pm and Simon was not back yet and I really started to worry that he wasn't going to be there. I was lying on the bed and the midwives had gone out of the room and all of a sudden I felt my waters break, just a small little gush, like a little release. The midwives had shown me a large stainless steel bowl with a white towel folded up in it, that I could sit in the toilet and I could sit on that if for some reason I had her on the toilet. When I felt my waters break, I panicked and got straight up and ran to the toilet thinking, that was where I was supposed to have her. Maybe I had had too much morphine. :) I didn't realise that the toilet seat had to stay down and the bowl wouldn't sit right in the toilet bowl with the seat up. I pressed the emergency buzzer (later the 2 midwives who came running down the hall said they panicked as they realised I was in there by myself) and I said, "I think she's coming". They pulled the toilet seat down and put the bowl on it which of course fitted perfectly and I nervously randomly giggled at my blonde moment of non spatial awareness. I sat down and quietly I felt Charlotte come into this world. I had never felt so empty in all my life. When we found out that Charlotte had Down Syndrome, it was okay because we still had her, we still had our baby, the package she came in was unexpected, but she was alive. And now she wasn't and what's more she was not even a part of MY body anymore either.

The midwives were looking at Charlotte, looking to make sure the placenta had come out too, worried that anything was going to be left behind. I was just standing there, trying to process what just happened, but it was all feeling too surreal like someone was tapping me on the shoulder saying, "someone had to give birth to their dead baby, oh that someone was you". The midwives asked me if I wanted to see Charlotte. I was scared. I was scared that bits of her might be missing or had broken down and I didn't want to have those images in my head. I said to the midwives, "do I want to look", ready to accept whatever decision they made, like I was a little child awaiting instruction from their parent, thinking the parent would know best. Without hesitation, they replied, "oh yes". And they said it so kindly and with such tenderness. I looked into the bowl and what I saw took my breath away. Time stopped, the world stopped, my breathing stopped as I beheld the most perfect, most tiny, most exquisite and fragile beautiful baby I had ever seen. Every part of her was there. Everything was in order. All she needed to do was grow. Her tiny right hand was curled up in a fist resting on her cheek while her other arm was by her side. You could see the little wrinkles in her fingers, her defining little ears and her perfect little face. Her tummy was a bit bloated and her mouth was wide open and I worried thinking maybe she had been gasping for air but the midwives assured me that their mouths are always opening and closing as the amniotic fluid flows in and out of their mouths. The placenta was the size of a fifty cent piece and the umbilical cord was like a thread of cotton. I was in awe, oh the love that was in that room, it was almost tangible and the midwives knowing that it was a sacred time for me, left me on the bed with her alone so I could have some time with her. I stared at her perfect little body, forgetting for a moment why I was there and marvelling at the miracle of human creation. I remember thinking, "if there is anyone out there who doesn't believe in God, they need to be in this room".

Simon came into the room and I saw the look of panic in his eyes as he realised what had happened and that he was not here for me during her delivery. He said he could never forgive himself for not making it back in time. For some reason I was okay with it, like I felt that it was okay to go through it alone because I wasn't alone at all, Charlotte was with me the whole time. We spent a bit more time with Charlotte, just the two of us with our precious baby girl. The doctors had talked about doing an autopsy on Charlotte but she was very small and because they already knew she had Down Syndrome, they were pretty certain that it was probably something to do with her heart that had caused her death. Fifty percent of children with Down Syndrome have heart problems, many serious enough to require heart surgery after they are born.

Even though it was so so hard to have to go through the delivery, to know that she was not going to enter this world all pink and robust and warm and knowing, feasting our eyes on each other for the first time, I've been trying to find something positive. I know that after her delivery, I received the gift of time to spend with her. And even though at the time, I did not think I had the strength to go through the delivery, to physically see all the dreams and expectations of life with my Charlotte at a final end, I am grateful for the time I got to spend with her afterwards. To feel the room filled to bursting point with love, love that even death could not deny. If that's all I was going to get, then I was going to run with it and be grateful, even for that.

Somehow through all the exhaustion and constant obs on me during the night, I got some sleep. I woke twice when I heard two babies being born. At first I was upset that I could hear the mother's final pushes expelling their ALIVE newborns and hearing their first cries but then a softness enveloped me and I quietly accepted that for those Mums at this point in time, it was a time for celebration and love and it was their moment to shine.

The final page of Kelle Hampton's book goes like this, "For Nella was indeed very real from the start, but it was her Mama who needed to be transformed by a greater love - a love that sometimes hurts. It was me who needed to become real, and in one soul-stretching year, I did".

All along I thought my journey to Holland was going to be just about the daily routine of learning to raise a child with special needs, about how I could make her fit into my little comfortable niche. What I didn't realise was that Charlotte was sent to us to transform me, because I needed to be transformed by a greater love and this gift that she has given me, this new perspective and awareness, this new greater unconditional love, noone but my beautiful baby girl could have done it.

 And as Kelle Hampton expresses it so perfectly in her book, "Im so sorry I was sad at first. But its okay. I just didn't know. But now I know....". 

I just wish my beautiful girl could have stayed, to share her precious gift with those that love her the most and with her Mummy, who loves her most of all. What I would give to be living in Holland with her right now.

I thought not going to Italy was my defining painful moment, but instead the pain of not going to Holland took the cake, and then not ending up going anywhere at all in the end, well there are no words.....


Kayla reid said...

Your story had me in tears the whole way through. You are such a strong amazing person Simone. All of your children are so lucky to have such a great role model in their lives. I hope each day gets easier for you and Simon xxx

Blanche said...

You have written this so eloquently Simone. So much of what you have expressed rings true with me also, even down to you saving your crying for the shower! Life is like a refiners fire; it burns sometimes but in the end you are more beautiful for it xxx

alisoncosker said...

Thank you, dear Simone, for so intimately sharing such a precious part of your journey. Your baby girl will not be forgotten. xo

The Kings said...

Amazing post Simone about your beautiful daughter. I wish so much that you got to spend time with her on earth, but know she was too precious to stay. Lots of tears for you today. xxxx

Chelsea Parsons said...

oh man, that was amazing Simone.. love you xx

Wheeler Team said...

I'm so proud to call you my sister Simone, your strength and courage inspire me. Though your journey has been painful you are more beautiful for it, I love you xxx

Tricia said...

I'm so sorry that you never got to hold precious Charllotte in your arms. I know all to well the empty arms feeling. What is amazing though is the strength of her spirit was such that in just a few short weeks she transformed a family. For many when 'gifted' with a child 'special' from others it takes them years to come to terms with the diagnosis but also to come to a point that they see the intrinsic beauty in a whole population of people and that it is they who ultimately hold the secrets to life. It is them who know their true purpose on earth. No soul searching, no endless wondering of what does it all means. Charlotte gave you a glimpse and in true testament to your strength of character you were able to grasp the lessons she was sent to teach in a moment of time. I am so sorry for your loss but I celebrate and congratulate you on the having the experience of loving Charlotte

Lotti said...

I am so glad that I read your post .... it was truly beautiful. Thank you for sharing. There are no words to express how reading this made me feel, except to say that I have been very touched by your words and your honest feelings of this whole experience. Someone asked me recently if I could change anything in my life what would I change (I have a daughter with a disability) and I said nothing ... it wouldn't be the same if I changed things.

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I love your honesty and courage in sharing such a deeply personal and raw part of your life. You are an inspiration to me and hold a special place in my heart. Love felicity

Carli said...

I had no idea any of this happened when I was talking to you at Nan's funeral. You are just beautiful Simone. Thank you for sharing this x

Makayla said...

Such a beautiful post Simone. Charlotte is blessed to have such lovely parents to raise her in the eternities.
I'm sorry for your pain, and wish she could stay on earth...
Love you heaps, been thinking of you all day xxxx

Hannah Challis said...

What an amazing journey Simone - I feel so sad that you had to go through all that, but thank you for sharing and helping me to understand just a tiny bit about the things you have experienced. Charlottes story has taught me! Xx

April said...

Oh I'm thinking of you with a tender heart today...sending all my love...

melandpeter said...

What a beautiful and sacred experience to share with the world. Although my brother Dylan passed away when I was not quite 4 I have vivid memories of him and believe his short life with my family has made us the people we are today. I have yet to meet a person with Downs who hasn't brought sunshine to my day :-)

Bride said...

what a beautiful post. what an emotional roller coaster for you and your family. You write so well, i felt like i was reading a book from an experienced author. very inspiring
I still remember seeing you in Melbourne not long after charlotte had passed away (I wasnt aware at the time of what you had just been through)
But i do remember thinking what a beautiful person you were xxx

Jenny The Great said...

Reading your beautiful, sincere post made me think of this quote.

"The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new." ~Rajneesh

Your precious Charlotte truly changed you as a mother, a woman. Thank you for sharing such a sacred experience.

leetai said...

Simone that was such a beautiful and touching post. I couldn't take my eyes off the computer screen as I read your words....nor could I take my hand off my belly as I felt all the kicking and movement that I so often take for granted. Thank you for sharing yours and Charlottes story with us. xx

Anonymous said...

I want to thank you so much for sharing your story - when Lisa shared it on her blog little did I know that just a few short weeks later I would be going through the same journey. I was able to reflect back on your words and hold onto a little comfort that I was not entirely alone. Thank you.

rebekah @ justfordaisy said...

This is amazing. I'm so sorry you had to go through this. But praise God you will see your precious little girl again one day.
Thank you for sharing this and making me a touch more grateful today for the small things, like a crying baby and a messy toddler. God bless x

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