Why we decided to store our children’s cord blood:
As many of you may know, when I was pregnant with my eldest son, Hunter, I lost my beautiful mother, Suzanne (the day before finding out we were pregnant). Mum died very suddenly and unexpectedly from a blood clot that went to the heart and caused a heart attack. She was in the best health of her life and she was only 63 years old. It was a devastating shock and something I still struggle with everyday she isn’t here with us. During my pregnancy, I was grieving so I didn’t want to do the ‘usual’ exciting things you do when you are expecting, like having a baby shower, setting up the nursery or attending baby expos. But my sister in law knew how much I would normally love these things and something I would have done with my mum so she booked us a ticket and we went to a baby expo. I cried mostly throughout it because I wanted to enjoy it, but I desperately wanted my mum to enjoy it with me. We walked past the Cell Care Australia stand. I had never heard of storing cord blood or tissue. The sales assistant was friendly and gave me all the information and research they had conducted thus far. Initially I thought, it was too expensive but I continued to listen. As I was standing there listening, I had a sense of calmness come over me. I felt like Mum was there with me (something I have learnt to listen to over the years as her way of showing me her presence). I was unwell growing up and my parents spent a lot of money on doctors as no expense was ever spared for my health. I felt as if Mum was standing there, saying I think this is a really good option and something to consider. I went home and spoke to my husband and my father. We did our research and re-read all the information provided to us. After considering all the health issues I had been through and never knowing what was wrong (until later in life when I was diagnosed with Lyme Disease – no longer have it now), my father said, they would have done anything to have had my cord blood stored. After losing Mum so suddenly, I realised that health is something that is so important and I think often we can take it for granted. I tried to put myself in my parent’s shoes, imagined what it would have been like to have a sick child, I thought, I definitely need to store my son’s cord blood. Hopefully we will never have to use it, that is the best case scenario but we will always have the option if he or his siblings needed it. It wasn’t something that we wanted to gamble with and in the long run, if it could potentially save their lives, it would be worth every cent. It can only be collected at birth. We all insure our cars and homes, this was a no brainer for us.
Benefits of storing and family cord banking:
Whilst Cord blood at the moment doesn’t necessarily assist with the issues that I experienced or my mothers, it doesn’t mean that it couldn’t in the future. One of the biggest things I learnt whilst being sick was to look at research and look at the future. I was lucky to have a doctor that knew about Lyme and treated me for it. She said, “The way they look at Lyme now, is how doctor’s did centuries ago about washing hands between patients. Now it is common practice that a doctor wash their hands between patients to prevent bacteria being spread”.
Your baby’s stem cells are powerful, unique cells that are the building blocks of the body. They can only be collected at birth. Stem cells are powerful because they have the ability to create and regenerate the organs, blood, tissue and immune system that make up our bodies. They have the function of growth and healing throughout life. Stem cells can be found in places like bone marrow and fat tissue, but the younger, more flexible stem cells in the body come from a newborn’s umbilical cord blood and tissue.
Worldwide, cord blood has been used in over 40,000 transplants for over 80 life threatening conditions. In addition, clinical trials are underway for the following conditions:
Type 1 diabetes
Traumatic brain injury
We decided to store Hunter’s cord blood for 25 years. We did the same with our second son Archie. We will now do it with our third child. Family cord banking is another reason why we have chosen to continue to store as well as the storage of cord tissue (I will discuss this in another blog post). Sibling matching is the reason for further storage.
Family cord blood banking means your child’s cord blood stem cells may also be used to treat compatible family members. For some conditions that are genetic in nature, an allogeneic or donor transplant is required, as the person’s own stem cells will have the underlying condition and therefore wouldn’t be used. In these cases it is beneficial to have a sibling’s cord blood stem cells available, as they are a better chance of matching, and often produce better outcomes then a matched unrelated donor. So essentially you are getting potential options for the child it is stored for if an autologous transplant is required, and also a potential use for sibling or allogeneic transplant in the case a sibling requires a donor.
The chance of an exact cord blood match from a sibling is 25%, and there is an additional 50% chance of a half match. Importantly as cord blood is less immunogenic (seen as foreign by the body), a perfect match may not be required.
My experience with storing: Labour and beyond
I went into spontaneous labour with Hunter at 39 weeks and was induced with Archie at 39 weeks. As soon as I started my contractions, my husband called the Cell Care labour line. By the time we got to the hospital (with my Cell Care kit in hand) they had a collector there. The collector came in and introduced herself and reminded me they needed to take some blood. They offered to do it now or later. Both times I opted to do it straight away just in case there were any complications with labour. After that, they waited outside until I was ready to push, which is when she came back into the room. Both times I didn’t even notice she was there. Cord blood collection takes place immediately after the birth of the baby once the cord has been clamped and cut. The cord blood is collected into a sterile collection bag. The procedure is painless for both mother and baby, and takes around three minutes. The cord tissue is collected after the delivery of the placenta. They took their sample, and within 24 hours my kit was collected. We received a call a few weeks after having our baby saying it had been stored plus we were sent a letter of registration. It was very easy and completely unobtrusive. Your collector is a trained cell care collector, obstetrician or midwife.
It is a very easy process. A 4 step online process, which takes about 10 minutes to complete.
1. Choose cord blood or cord blood and tissue
2. Select your payment plan
3. Pay a deposit ($150 for cord blood or $250 for cord blood and tissue)
4. Complete medical questionnaire
A member of the team calls you within 24 hours to go over it with you. At 34 weeks a courier delivers your collection kit, which you store in a dry dark room. I also store my kit with my packed hospital bag.
We have decided to store our daughter’s cord tissue, which will be the focus of a second blog review. Tissue is very much a future looking application, however is showing great promise in both facilitating the use of cord blood therapies, as well as stand alone applications. If you have any questions that you would like me to address in the next blog regarding cord blood, tissue storage, family banking or any other information please comment below or send me an email, so I can address it.
Cell Care Australia
*Disclaimer – please note this is an opinion review piece, I have no medical training, and this is based on my experience. This review was sponsored by Cell Care Australia.
As many of you may know, I suffered from an undiagnosed chronic illness for 20 years - finding out when I was 28 years old that I had Lyme Disease). I watched my parents suffer for some many years, trying everything to try and find out what was wrong with me. I was diagnosed with everything under the sun, and treated for it incorrectly. Due to this, it played havoc on my immune system, not to mention the disease eating away at it. It was actually a naturopath who lead me to Lyme Disease and once diagnosed, we treated it for 18 months through natural, vegan and organic methods. I am now Lyme-free, however it was a long journey as you can imagine (if you would like to read more - click here). So I made a promise to myself, when I have children, the one thing I could always give them, is healthy and organic food. It is so important to my husband and I that we have an active healthy lifestyle and good quality food (which I am sure is the goal for most parents). No one can predict the future, or if we will get ill, but we can ensure we have a strong immune system to help fight off anything that comes our way. I am lucky, that I had such a robust immunity to allow me to fight this disease for so long.
So when Bubs Australia reached out and asked if we would like to try their products, we jumped at the opportunity, as we were initially sold with their vision - to inspire new generations of healthy, happy bubs. But it goes beyond this. With my hubby working within the food industry, he is very well aware of labelling and what actually is 'organic'. He is always checking the packaging and showing me the ingredients which contradict this label. When I showed him Bubs, he said, the ingredients list are reflective of their marketing, and it is 100% Australian certified. Tick Tick Tick. Ok so lets give a try.
What did we try?
Hunter (2 years old)
Bubs Goat Toddler Milk
Archie (6 months old)
Bubs Goat Toddler Milk - HUnter 2 years old
If you have been following our story, you will know that it was important for me to breastfeed my babes. Something I was really passionate about, I did a lot of research and successfully breastfed Hunter till he was 13months and I still breastfeed Archie. I know it can be tough and I know a lot of mums who tried and it didn’t work for them and that is ok, and no one should ever judge another mother’s choice (breastfeeding or not) - mama knows best! I’m just sharing our story.
Hunter is now 2 years old, and our midwife recommends he has two cups of milk a day. He was on regular cows milk after 13 months. But he just never seemed too fussed with it.
If I am honest, I was a little hesitate at first, mainly just because I didn't know enough about goats milk. Hubby said it is so good and very nourishing. After researching it, this is some key points, I came across:
He loves it and actually asks for milk now. He has it twice a day, usually before his nap and after dinner.
Where can you purchase?
Coles, Big W, Costco or selected pharmacies (note that the goats toddler milk has a new contemporary look but the premium nutritional formulation is the same).
Superfood Pouches - Archie 6 months old
Archie is still breastfed as mentioned above, and he started solids a week before he was 6 months old. We are on a specific schedule with introducing foods and textures with the direction from my midwife. Archie now has tried most vegetables, meats, yogurt, peanut butter and egg. He is having three meals a day with a little bit of filtered water after each meal. I always breastfeed first before any meal.
I try to make all Archie's food fresh (with Hunter I used to do big batches and store in the freezer, but I am finding it easier to do just do a few days, and basically just mush up what we are having of an evening). But there are times we are out, and I want to give him a balanced meal. There are so many nasties in some of these products, so it was really important to check the ingredients, as a lot of brands claim one thing but do another. Archie tried some other brands and he just spat it out, I was shocked because he eats everything. When the Bubs Superfood pouches arrived, the first thing we did was check the ingredients. All certified organic ingredients with no added salt, sugar or preservatives plus allergy friendly.
The 10 flavours in the organic Pouches range are:
He smashes them! He doesn't spit them out and can't get enough. His favourites are the raw cacao chocolate custard, sweetcorn, pumpkin and chia, and strawberry, pear and quinoa.
Where can you purchase?
Coles nation wide.
Bubs dry cereals - Archie 6 months old
Archie starts his morning with the cereal mixed in with fresh banana, apple or pear. The Bubs dry cereal range are Australian made from Australian Certified Organic rice, oats, and ancient grains, blended with pure real fruit and enriched with essential nutrients. No added sugar, artificial additives or preservatives. 1 pouch makes 12 bowls of porridge (so economical).
The 5 flavours in the Organic Baby Cereal range are:
He loves the texture and the flavour. As he starts to eat more thicker and mushed textures, you can just adjust the amount of water you put in, which I love and find really beneficial. His favourites are the Banana Rice cereal and the ancient grain porridge.
Where can you purchase?
Chemist Warehouse nation wide.
Bubs toothy rusk - Archie 6 months old
Archie has started teething (send help!). ;) I find rusks so good for them to munch on for their sore gums as I try to avoid giving anything to them, because it just weakens their immune system. I have also found it is good for his hand eye coordination and it is assisting with him to start and learn to feed himself.
Bubs' hard-baked rusks are made from a trio of organic multigrains and pure organic apple to support the development of healthy teeth and jaw development by encouraging chewing and biting. They come in an apple and barley rusk which is lactose free.
He chews on it all day. I find it really useful during the 'witching' hour, when I am trying to get breakfast or dinner ready or when we are out and about. It entertains him for a bit and gives him some relief.
Where can you purchase?
Chemist Warehouse nation wide.
Website - www.bubsaustralia.com
Instagram - @bubsaustralia
Disclaimer: Before starting any new products, please always seek medical advice from your practitioner, I am not a health professional, I am a mother sharing our story and experience. This blog post is sponsored.
A day in the life of a Bubs kid ;)
It has taken me 2 years to be able to write this. Today she would of been 66 years old. I remember saying to my brother after she passed away, we have to write everything down about her so we don't forget and so our kids know everything about her. But what I have learnt, is my children already know her. They knew her before they knew me. As I've written in a previous post, Mum came back to me when I gave birth to Hunter, 9 months after she died. She stayed with him until he was Earthside and continues to walk with us everyday.
Everyday Hunter looks at the photo in his room and gives 'Gema' a kiss. I never taught him to do it, he just always did it himself and says Gema. He knows when I talk about her and I want him to always know she is with us. When he is alone or scared, he will always have her protecting him. And my other children. My brother and I always bring her up and talk about her little quirks, what she would say or do in any situation, but I want something written so we can't ever loose her memory.
Name / s:
Born Suzanne Stafford to John and Irene.
She took the confirmation name Marie after our lady. So she became Suzanne Marie Stafford. She later became Suzanne Marie Sawyer (her first husband Richard) and then later marrying my Father, John and she became Suzanne Marie Grima.
26 September 1951
13 August 2015 (aged 63)
2 older half sisters: Sandra and Jan. Sandra died from a heart attack at 40 years old.
Mum was the eldest to her two younger siblings. Phillis (Pip) 11months younger and Lee - 7 years younger.
Catholic. She wasn't baptised as a child as her father was Church of England and her mother was Catholic. She was the only one who decided to become a Catholic like her Mother which did when she was 13 years old.
Born and raised:
Born in Newcastle, grew up in Bankstown, NSW (Gardenia Avenue).
School days / upbringing:
Pop had a milk run but then later worked for Telecom (Telstra). Grandma was a house wife and apparently a fantastic baker. Both her parents had English heritage (Leeds and Scotland). Mum had such a fond spot for England in her heart.
The book worm. The A+ student. The good girl. Her younger sister Pip was always in trouble at school and the teachers never believed they were related. Pip used to put an apple on Mum and Aunty's Lee head and throw darts at them!
As Mum got older and went on her first date, Grandma didn't want her to go alone. So she had to take Aunty Lee (her sister who was 7 years younger). So mum, her date and Aunty Lee at the dinner table (third wheel?). Mum was mortified when her little sister, half way through the meal, took her shoes off and put them on the dinner table 🙈
Suzie Q, Suzie Sausage (when she was little), little mum, SQ, Suzuki, little Sue, Sueridge (all from my brother!).
When she passed she worked for Sylvandale in Recruitment. She worked most of her career in the bank as a loans manager then managing accounts for various companies. Extremely hard worker and always put in more hours than expected. She had the best work ethic I have even known. She hardly ever took a sick day.
Marriage / s:
At 19 she married Richard which they were married for 11 years. They never could fall pregnant, trying everything. Ironically, they both fell pregnant seperately in their second marriages (Richard's second wife) and they are the same age as my brother and myself!
At 30 she married my father, John. They were married for 11 years. (We always joked she got rid of them after 11 years!). She had my brother Adam at 31 and myself at 34.
At 48 she met her partner Nick. They were together for 15 years, when she passed away.
Adam John Joseph Charles Grima - 5.4.1983 (aged 31 when she had him)
Joanne Lee Theresa Irene Grima (now Zammit) 21.9.1985 (aged 34 when she had me).
Grandchildren (to date):
Hunter Francis John Zammit 18.4.2016
Baby Zammit due Oct 2017
Joanne's husband - Adam Karl Zammit
Adam's fiancé - Jade O'Bryan
Where she raised her children:
Bundeena. She bought her first house at 19 years old. Paying $4000! She lived there with her first husband then her second husband, and raised her two children there. She lived there for 31 years.
Engadine. She lived here with partner Nick and her children until they moved out, for 13 years, which is where she passed away.
Little quirks / loves:
We miss you with every heart beat Mummy. There is not a few hours that go by that you aren't thought about or talked about. We love you so much, and thank you for you ever did for us. Happy birthday our angel. Xoxo
I think this topic is going to be a big focus of my blog. Mainly because it is something I am still learning + probably has been one of the focal points throughout my life.
So what do I mean about protecting you? I have and still struggle with understanding people, especially why they can be unkind. Why do they leave people out? Why they can nice one minute then not the next? Or make you feel invisible? Or say undercutting comments or worst just don't comment at all if you are doing well? Is it the root of jealousy? Is it sadness in their heart? Is it a lack of intelligence - namely emotional intelligence? Lack of empathy? Narcissism? I don't know + I am not sure you will ever know. I have combined a few self help steps / things I've learnt over the years to help me deal with these people.
You can not change someone because that is controlling them. Save yourself a lot of stress + worry, and recognise, that people are who they are + it is their journey, they have to change for themselves. You can be a role model for goodness + kindness but you can't change them. So accept them for who they are. But you don't need to have them in your life or put up with their behaviour, that isn't acceptance.
D o n ' t c h a n g e y o u :
As I have mentioned this is an issue I have had since I was a little girl. I used to say to my dad when I was in primary school, but why are they mean, why can't they just be nice? I have had loads of therapy, trying to change me. As lots of people will tell you, you are too sensitive or expect too much. Whilst there is truth here, what I have learnt (after many therapy bills), that you don't need to change you, being sensitive, caring + thoughtful is your makeup, it is who you are, without it or if it is pulled back you loose your beautiful, loving, generous self. Just because others don't have these qualities, doesn't mean you have to change yourself. For example, if a friend, doesn't ever comment on how you look or asks how you are (maybe they only focus on themselves), rather than changing you, and not doing it in return (eye for eye never ends well), continue to be you, give a compliment + ask how they are, don't let them control who you are or change you, you stay authentically true to yourself. Please note - sometimes you do have to change you IF it is affecting your life negatively + when it is debilitating. If you can't go to work or leave the house, something needs to change.
W o r k o u t h o w m u c h o f y o u:
This is something I have only learnt recently and has been a game changer. What I mean about this is, don't change you as previously discussed, but protect you + work out how much of you someone gets. This will evolve with relationships over time and will take sometime to work out. I had a friend that I always contacted and asked how they are and organised catch ups. I would constantly get frustrated + ask why, it feels so one-sided. If on the off chance they did contact me, I would ask myself, should I call back, should I be cold, should I tell them how they have treated me, so they know how it feels? No! Don't change you. Respond, be kind, ask how they are, remember don't let them change or control who you are. BUT if this person continually is only giving you a little of their heart / time / attention or interest, you pull back too and do what works for you. You may be an 'accomodater' , you catch up when or where they wanted to, didn't really suit you but you just wanted to catch up. Now ask yourself, does it suit you? Also you might of told them everything and anything about you (I do it all the time), but maybe don't tell them everything all at once. If you know they don't respond how you want them to (eg you have lost weight and are proud of yourself or good things are happening at work) if they don't usually show an interest, maybe don't show all your cards straight away.
T h e c i r c l e:
I am going to do a seperate post about this because I think it is really useful. But basically 'the circle' is a practical task in which you draw a few circles within a circle (the amount of circles) will depend on the amount of people you will include. You are in the centre of the circle (some people may add their God here too). The next circle is the next group of people you can trust (don't think of who you SHOULD have here but more who you trust the most). It might be an uncle or an aunt not nessasarily a parent. The next circle, is the next group of people who you trust. Please note that people will move in and out of these circles. What your circle looks like now, may look very different in 10 years time. You may have one or two people or zero in certain levels. The closer they are to you, the closer you trust them, if they are 'far away' whatever they do can't 'hurt' you. More to come on this.
One final thought - remember to adjust your expectations. If you are usually invited or expected to be invited to things or be included, and after 3 times you haven't been invited, just expect to not be invited. Or if you continually message a friend or organise the catch ups and they don't do it in return, it is is one sided, expect to either do the organising or don't see them at all. The sad thing is, some people who were always in your inner circle, closest to your heart, the ones you could trust, my no longer be there. Don't spend hours worrying or googling (like I do - what is wrong with me?) but put it back on them, it isn't a nice trait they have and has nothing to do with you. Let them own that ugliness. You are only in control of you, as long as you are kind, that is all you need to focus on at the end of the day. Adjust expectations, don't lower them or your standards.
Not sure where to start, I have so much to say, so much pain still inside of me. Loosing my mother has changed me forever. A piece of me died the day she died. I never thought I would be this girl. The girl that was motherless or a motherless mother. It has nearly been two years that I lost her so instantly. My heart was ripped out of my chest and I as I write this, I feel that same pain.
This is for my boys who will experience this same pain one day but also to help others who haven't experienced grief themselves or are in the early stages...grief never ends. I'm sorry, I am an optimist by nature, but I have to be a realist about this. Until I meet her again which I will, one day, my heart will never be whole again. Please don't get me wrong in thinking, I am not grateful for my life, my husband or my children - I am , so very much. But anyone who has lost someone who is truly part of them, knows what mean. My husband says to me all the time, I know your heart broke the day Mum died, everyday, it is my goal to try and mend it.
I want to talk about the pain that is raw and how that wound continually is opened (everyday or every few hours or every few days - I can't tell you when or how, it just opens). Whilst I want to honour my mother's life and her legacy, I want to also speak my truth, as writing helps me process but also to possibly help my boys one day when I am not here.
I recently read a blog about a woman who lost her baby at 22 weeks pregnant. In her words, her baby was born into heaven. Heart breaking. She described her grief which is very real and very true for me. Particularly how others react. Now while, this is not a guide on how to react or not to react but I want to share my thoughts on things I struggle with even now. I ALWAYS hear, 'but I just don't know what to say' or 'Jo, don't be so hard on them, some people just don't know what to say'. Here is a the truth. I DON'T CARE. Sorry for being blunt. But I don't care how awkward you feel. I don't care if I make you feel uncomfortable and I don't care, that you have a few moments of uneasiness and then you go ahead with your life. I am not saying I want you to have my pain because I would NEVER want to inflict this pain onto anyone (it is the worst f*cking pain a human can experience). But what I am saying is, stand in my shoes, just for a second. What would you want? It is really simple. I'm thinking of you. Was that so hard?
The next one is the utter loneliness you experience about a month after your loss. The messages stop, the flowers stop, the people stop. Everyone else's life continues (and don't start me on Facebook, people uploading 'I locked my keys out of the house' or 'my kid is teething') my mother died, my heart has been ripped out. I will never see her again. Never ever. She won't ever meet her grandchildren. We won't ever laugh together. We won't ever shop or cook together. But I am sad for her future too. It won't happen. Never again. Something that really gets me all the time is when a new style in fashion comes out. Mum and I would always talk about it. She won't ever get to see what is on sale in her favourite shop or what is in. I am trying to have some structure to this post but I just can't, I feel I have to speak from the heart. This is how I speak to my husband (2 years on, this can still happen daily these conversations). The triggers are always there. The one that hurts, is seeing other people with their mums. And don't you dare, EVER, complain to me about your mum. NEVER. I am not blaming you for having a mum but it just hurts me that I don't have mine. I want her back so desperately and there is NOTHING I can do about it. NOTHING. Think about the word NOTHING. It is final, there is no change, there is no progression. I often hear people complain about certain things in their lives. Everyone has hardship and no one should judge someone else's journey but I sometimes sit back and think about how people can be selfish and often ask myself, how would they feel if they experienced this level of pain? As you can see, my pain is deep, 2 years on.
You know something else I have little patience for and you will notice a lot more of these topics on my blog posts - are people who just are shit (jealous, bad energy, not thoughtful, fake, self absorbed). Prior to mum, I struggled with people not understanding, respecting, being kind - and always thought I was the problem. But you know what?! I am not the problem. I am a genuine and kind person which is what anyone says about me (I am not trying to toot my own horn), but I seriously could not give a shit or have time or patience for rudeness, indifference or disrespectful people. I choose to have a select few people in my life, if you are a jealous, selfish, unkind, disrespectful person, you just won't be in our lives. I have no problems cutting you from our lives (sounds harsh) but I just do not have time for people like this anymore. I would procrastinate or justify for hours on end, but they are family or I have had them in my life for so long - nope! If I don't get Mum in my life and you are shitty, you aren't getting any of my time and I am unapologetic about it.
I miss her calling me Jo Jo, or Hi princess, love you. Or where are we shopping this weekend? I miss her. My body aches for her. I hate it that other people experience my life and she doesn't. And I hate it she doesn't know my son. She never saw me pregnant, she doesn't get to hear about Hunter's personality. And I hate it that other people do. I hate it when people underestimate their time on this Earth, the relationships they have with others, particularly my son. My mother would of been the best grandmother. I hate she never got the chance to even know she was one. It also upsets me when people say, well at least you have Adam and Hunter. Yes genius, I know what I have which I am grateful for and thank the Lord for everyday, but that doesn't mean that erases my pain from not having her. Plus why should I have to have one or the other? Do you get to choose between having a child or keeping your mother? Or your partner dies when your child arrives. No! It sucks. Take away my car, my shoes, my handbags - not my mother, and please don't compare them.
One thing I am struggling with at the moment, is the feeling of people making me feel like I should be 'over it' by now. News flash - I am not and I never will be. You don't like it, don't be around me. While I don't mope and let it control my life (I try to maintain my bubbly personality but the reality is, I cry myself to sleep most nights into my pillow and have a big cry at least once a day for her) it is part of who I am, it is now part of my make up and if you don't like it, I wish you the best, but we are no longer meant to share this journey together. This is the same feeling I started to feel a few months after she passed. When the communication stopped from people (and it wasn't a few it was ALOT of people). I have been dealt some hard cards this life - a chronic undiagnosed illness for 20 years with crippling chronic pain, Lyme disease, cancers, brain tumours, divorced family, sexual abuse - I have lost a lot of friends over the years, why??? Because people don't like hardship. They don't know what do to, they distance themselves. They think about themselves and how 'awkward' they feel rather than how the person experiencing hardship feels. 'Friendships' are a hard topic for me. I hear a lot of people say, a true measure of someone is their friendships. Or why do people think they are a 'better' person because they have a lot of friends? Let me really point out a huge thing. Have you had hardships in your life? I don't mean a few, I mean heart breaking, crippling pain? Because people don't stay around for this. People get 'sick' of it. So before you judge someone on their friends, think about what they have experienced. I know I am a good person, and friend, but I don't have many friends and I have lost a lot of them along the way. Loosing mum I probably lost at least 5 good friends. But in the end I didn't need them, I only need her, my husband and son.
What else makes me sad about Mum not being here is not only how she doesn't get to see me grow or my babies. But it rips my heart out knowing she doesn't get to see my brother's either. The three of us were extremely tight. I owe that to both my parents. But my Mummy got to meet my beautiful husband and was there on my wedding day. My brother doesn't get to have that. Mum was his idol. His go-to, his confident, his rock - the one person he would want to meet his wife or see him marry, would be her. And it breaks my heart into a trillion pieces that he misses out on that. As a mother you pray for healthy and happy children. I just want to scream to her, I wish you could see him, I wish you could meet his soul mate. I wish you were here when he says 'I do'. He told mum, on my wedding, it was the happiest day of his life (not many brothers say that), I just wish she could of seen his happiest day because I know when he marries or holds his child for the first time, that will be it. It just breaks me. And hurts me so deeply that she doesn't get to see it either.
Shopping is my hobby and it was mums. We always did it together. Shopping is hard for me but I try and enjoy it for her. But it breaks me when I am out seeing mothers and daughters together. I just want her back here so much. Even just seeing someone driving in the car with their mum, it is like someone got two bricks and squished my heart in between them.
Two big things that I have noticed that I 'can't' do or find difficult doing is putting music up really loud and singing and dancing to a song I love. For a long time after mum died, I couldn't even listen to music. Sometimes now there are certain songs that are definate no no's. But enjoying a song (you know how music can take you to a euphoric state), I just can't do it, I can't allow myself that pleasure, maybe it is because she loved music so much and it reminds me of her and how she used to sway to her little songs, I don't know, but guilt rushes through my veins.
The other one is the phone. Something I struggled with ever since she died. And I've spoken to a lot of people who struggle with grief and loss and they find it difficult too. When mum died, I couldn't talk on the phone for at least a month. Some people now I still won't speak to on the phone. And you know what shits me the most, I've told this to certain people, and I've opened up and said I really struggle talking on the phone, can we text instead? I had one friend get really offended and ALWAYS just called me, rather than text. I kept saying, it isn't personal, but I struggle with talking on the phone. But she kept calling.
Maybe it was because I can't ever talk to my mum again on the phone so I don't want to speak to anyone else or because the last time I thought my mum was calling (it was my step father calling me to say she is in the ambulance - f*ck that just hurt typing that), I was about to tell her I was pregnant. I don't know. But now I push through a lot / most phone calls. People hate it and get frustrated with me because I don't always answer (I will always text you back though), but I can't do it. But what hurts are the ones that know this and still call me when I've said it is too hard.
So the pain hasn't gone. There is a wound, that just needs to be peeled back ever so slightly and the rawness is exposed.
Oh hey fellow perfectionist 👋🏼 or friend/partner of a perfectionist who is driving you crazy ;)
Perfectionism is a blessing but can also be a curse if not managed correctly. It can mean you are extremely thoughtful, pay attention to detail + are ambitious. But it also can have you up to all hours of the night, google-ing, analysing + dissecting every aspect of a situation and can leave you often disappointed with others. I think with any personality trait there is always a positive + negative. Today I am going to talk about the perfectionist + how it affects their relationships (as no one is ever good enough + if they are close, they better be the way you want them to be). Wow! How do I even have a husband + friends?! Haha. I think the main aim thing is, how to not get disappointed in others, adjusting your expectations and accepting people for who they are, even if it doesn't feel right to you.
I have recently read the book 'Expectation hangover: overcoming disappointment in work, love and life' by Christine Hassler. Hassler coined the term: You wouldn't go to a Chinese restaurant and expect nachos. I lovvvvvvve this! It resinated so well with me + really helped me deal with relationships. So I will be using this analogy throughout my post.
Okay so you wouldn't go to a Chinese restaurant and expect nachos, would you? You may expect really good rice, noodles or spring rolls. This is because they have these ingredients to make these dishes. They use them all the time, they have perfected them, and more importantly this is what they are known for. Now if you go there expecting to get nachos, you will be disappointed. Imagine sitting down reading a menu and realising there is no nachos or asking the waiter for nachos and them saying, no we don't have it. You will be disappointed and you won't even be able to enjoy what they cook well because you are distracted from the ingredients they lack. This is the same as people. Think of a friend, family member or colleague. They are the restaurant (we will continue to use a Chinese restaurant for now). Now think about their qualities (these are their ingredients). For example, your friend may be social, bubbly and lots of fun but they aren't a good listener or they aren't thoughtful and can be selfish. You love spending time with them but walk away feeling deflated at times because they don't pay attention to what you are saying, talk over you or only talk about themselves. So this person's ingredients are (social, bubbly, fun) like the Chinese restaurant (rice, soy sauce, noodles) but they don't serve (thoughtfulness, selflessness or listening on their menu) ie. they don't have the ingredients (corn chips, sour cream and guacamole). So why expect it?
Once you establish their ingredients / qualities, ask yourself when you are looking for advice or sharing information about yourself, what exactly do you expect a person to say or do (let's face it perfectionist - you know the answer to this one before you even ask the question, that is why you are a perfectionist, you already know how you want someone to react). So what are you looking for? Compassion, empathy, acknowledgment, praise, kindness, understanding? Then ask yourself does this person have these ingredients / qualities ? If they don't, don't go to them.
You would expect all restaurants (people) to have the basics - water and flour (kindness and respect). But in some cases the quality of these ingredients may be lacking and if that is the case, why would you want to eat there anyway?
Now sometimes you can go to a Chinese restrauent and expect good rice (like going to a friend who is always empathetic) but sometimes the rice isn't nice or what you expected, like a friend, they might not give you what you need. It could just be a bad day in the kitchen, a tiny mistake, but if you keep going back to that same restrauent and the rice isn't good, then they have changed their ingredients. But remember the first time you experience 'bad rice' from your favourite Chinese restaurant, you will be very disappointed. There is no escaping this, but you would be silly to think after three bad experiences, that their rice is good, they obviously have changed their ingredients therefore you have to change your expectations. People change, so you will have to adjust your expectations.
Sometimes you have no choice but to eat at particular restaurant whether it is a family restaurant or work canteen or function. Even though the meal may have you feeling ill afterwards (because their 'basics' of flour or water ie kindness + respect are lacking), you know this so you can expect it therefore the disappointment or shock isn't as bad.
Your partner is like an all you can eat restaurant, you should be able to expect all ingredients however when you don't specialise in a particular meal/cuisine it isn't always perfect. Sometimes the steak is great (praise) but the pasta is cold (empathy). But usually you pick a great a la carte place, so their quality is usually always spot on or cooked to your liking.
Remember that some people like the rice at a particular restrauent (crunchy with lots of veggies) but you might prefer your rice soft with egg, therefore someone might believe someone has a particular ingredient/quality but you may think otherwise which is also ok.
Just like deciding on what you want to eat for dinner, if the restrauent doesn't have your dishes you feel like eating, don't go to that restrauent. (You can also prefer a certain restrauent over another and that is ok).
What ingredients / qualities do people in your life / circle have? List their top 10.
It is important to list their ingredients so you are focusing on THEIR ingredients (you wouldn't list what restrauents don't have, only what they have to offer), you might say Chinese is cheap, has rice, noodles, and soup, NOT Chinese doesn't have pasta, zucchini flowers, lasagna, nice decor (but hey you might like Chinese decor ;)
By Joanne Zammit (Ghost Writer as a featured Lyme Disease Story).
Joanne Grima is just one of the thousands of Australians who has been diagnosed with Lyme disease, a debilitating tick-borne illness. But medical authorities remain unconvinced it even exists on our shores.
In July 2013, Joanne Grima, Sydney primary school teacher, had realised enough was enough. Her doctors had said she could no longer work, drive, live by herself, shower independently or swim without constant supervision. It was on this day, in a staff meeting, she had experienced one of many absence seizures.
In the preceding years, she had experienced multiple seizures, crippling migraines, muscle and joint spasms, a meningioma tumour on her brain, memory loss, anxiety, fatigue, weight gain, slurred speech, double vision, arthritis and PCOS. “I was being held prisoner by this mystery illness, I thought my life was slowly ending” said the 29-year-old.
Always a fighter, she was desperate to discover what was really wrong with her, after being misdiagnosed with epilepsy, multiple sclerosis, early on set of dementia and obsessive compulsive disorder. There was never any evidence of these illnesses and the medication only made her more unwell. Why couldn’t any doctor find out what was wrong with her? A super-fit, intelligent young woman had been riddled with pain and debilitating symptoms.
What she didn’t know then was she had joined thousands of Australians suffering from a multitude of symptoms, which is believed to be evidence of Lyme disease, a tick-borne illness, existing in Australia even if health authorities remain hesitant.
Its controversial status, lack of awareness and reluctant doctors treating the illness might explain why Joanne had so much trouble finding answers. Over the next two months, she visited a kinesiologists, a naturopath and her neurologist.
“My neurologist wanted to put me on heavy epileptic medication and said I was not allowed to drive, or live alone. I was told I wasn’t allowed to return to work,” she said.
It was at this stage, crippled with pain and confusion and knowing the horrific side effects she experienced when on the medication previously, she decided she would no longer see her neurologists.
“It was scary, I felt I was going this alone, my family were very supportive, but no one knew what was wrong with me, I really took a leap of faith,” she said.
It was Joanne’s uncle, Charlie, who had watched a documentary on Lyme disease a few months prior who suggested she might have it. A complex, infectious disease caused by bacteria carried by some ticks. Lyme was named after the town in Connecticut that experienced an outbreak in 1975. Joanne was bitten by a tick in Bundeena, in Sydney’s Royal National Park where she grew up.
“We had always mentioned to the doctors over the years that I had been bitten by a tick, but no one had thought it was relevant,” she recalls. “I was 7-years-old when my parents had discovered the tick on the top of my head after I had been complaining for a few days of a sore head,” she said.
Over the years, Joanne’s symptoms worsen. Her parents had tried many different doctors with little success. Joanne’s father, John, said he really started to fear for Joanne’s life when she started to doubt herself.
“She was always very strong and positive but then she started to wonder if it was all in her head, we knew she wasn’t making it up but the doctors were making her feel that way,” said Mr Grima.
Now, at least, Joanne had a theory. She had no idea, however, of the hurdles that lay head. While Lyme disease is recognised in the US and across Europe, The Australian Federal Department of Health said they need more evidence and cases before it is recognised. “The conclusive finding of the bacterial species that could cause a Lyme disease-like syndrome in Australia is yet to be made,” they said. Meanwhile, the Lyme disease Association of Australia estimates there are 300,000 Australians currently living with the bacteria-borne illness.
After doing her own research, Joanne had come across a kinesiologist. He suspected it was Lyme and sent Joanne’s bloods to America for an extensive analysis. Her results came back positive. Through a friend, Joanne was referred to a Lyme treating doctor, in Sydney. Joanne was diagnosed with chronic Lyme disease with four co-infectious diseases. During this time, Joanne started to see a Sydney-based naturopath.
“My doctor and naturopath worked together to treat me for Lyme disease and the co-infectious diseases.” said Joanne. “This was the first doctor who listened to me, listened to my symptoms and wanted to find the cause and had no hesitation in working side by side with my naturopath to get me better.” she said.
For most people, getting this diagnosis would be devastating. But for Joanne, it was a relief. “My family had spent thousands of dollars on medication, operations and treatment over the years which just made me more ill,” she said. “I was told that Lyme disease is fatal if not treated, but I knew I was going to get better and I finally had an answer,” she said.
Antibiotics are generally used to combat the bacteria, although the possible side effects of long-term treatment with these drugs are another concern. Due to Joanne having been on so many different medications over the years, her immune system was very weak. Her naturopath said it was important to get her immune system strong again and antibiotics would make it worst.
“We always focus on the cause and attack that, I put Joanne on an intensive detox, parasite therapy and vegan diet,” said Sydney-based naturopath.
Joanne and her doctor had agreed that they would treat her Lyme with natural therapies for 12 months, if there were no improvement she would start antibiotics. “I was so lucky my doctor agreed to this treatment and was happy to monitor me,” said Joanne. “The doctor knew my immune system was very weak and wanted the best result for me” she recalls.
It wasn’t an easy ride, with many herxheimer reactions, debilitating pain, being told her IQ can be lowered and having to resign from her job, but Joanne knew things would get better. “My faith is very strong and I believe everything happens for a reason. It lead me to meet my fiancé who has been on this journey with me and has stuck by my side,” she said.
“The complexity of the disease is mind-boggling,” says Dr Mualla McManus, a Sydney-based clinical pharmacologist convinced Lyme, or a Lyme-like disease, is here in Australia. The 52-year-old’s interest is deeply personal. Dr McManus believes Lyme complications killed her husband, Karl, after a tick bit him in 2007 in bush land on Sydney’s northern beaches. In 2010, she set up the Karl McManus Foundation to fund research to identify “exactly which Lyme bacteria exists in Australian ticks and patients”.
Even though the Chief Medical Officer’s Clinical Advisory Committee on Lyme Disease (CACLD) has ceased, the Australian Government Department of Health will maintain an interest in an Australian Lyme disease-like syndrome. The department has established a website (health.gov.au/lyme-disease) with advice and updates.
After 2 years of intense treatment, Joanne Grima, is now in remission from Lyme disease. Although, her life will never be the same and it will be difficult for her to ever work full time again due to the damage the years of medication and the disease has done to her body, her future is bright. “I am getting married in two months and have completed two Masters degrees and started my own business,” she said. “I won’t let anything beat me or hold me back,” she said.
"Joanne, you have early on-set of Dementia" No evidence-Neurologist says to a 20 year old Joanne. "Joanne you have Chronic Neuro-Lyme Disease, which you've had for 20 years....this can significantly lower your IQ (among 10 zillion other things) here is the research" says Lyme Disease specialist to 27 year old Joanne. "I have 3 degrees - 1 bachelor and 2 Masters" says perplexed Joanne. "Ok, wow!!" says complete.opposite.to.any.other.doctor.i've.seen.before Lyme Disease specialist.
My relationship with intelligence has always been a rocky one. Anyone who knows me will say "Jo is very intelligent but has no common-sense" or one employer said "you are way beyond your time, you are extremely visionary" (me: "how do you spell practise is it with a 'c' or an 's' - have to google it every time!).
From as far back as I can remember, I was always in reading recovery. You know, when you are taken out of the classroom to read with other kids who can't read too (and everyone in the class knows you are going out because you can't read - if that's not a self of esteem killer, who knows what is?!). We sat in a circle and tried to read allowed. I remember I always went last. By the time it got to me, I was listening to everyone else struggling to read a sentence, even if I knew previously how to read the sentence, I now definitely had no idea with all the 'umms, moos, baarrrks'. I grew up in a small beach town South of Sydney which was predominantly Anglo-Saxon. I was the only one with an 'ethnic' surname. So of course, I wouldn't be able to read. (Btw - both my parents were born in Australia, my mum's grandparents were English and my Dad's were Maltese) so I was hardly 'ethnic' but hey go figure, it was the 80s). So from the get go, academia was never something I excelled in my school reports. My year 3 teacher wrote on my report card "Joanne will never be academic, but she is very bubbly and popular". Talk about a mood killer. Kill. Me. Now. So let's just say, I was never really encouraged or shall I say expected by my teachers to ever achieve academically. Anyone who knows a gifted child or teaches one knows their social & emotional needs are critical for their success and wellbeing. Umm, that memo some how got lost on the ferry or in the sea water at my school. Thanks so much beachy primary for teaching me how to be the best colour-in-er & for later making me realise when I went to university that fractions really aren't just pies (hold on, who are we kidding, I still sometimes have to think really hard about the difference between a quarter and third!).
So as you can see, school was pretty shitty for me from the beginning and continued throughout my high school years. Except when I walked into my year 7 Japanese class (of course 7.4 - the class which they often referred to as "no need to help this class, they will be lucky if they even make year 10") Dead. Serious. Teachers said that at my school. So a foreign language - Jo, you so are going to excel (said no teacher ever). But this teacher was different. She believed in me (remember a huge thing for gifted kids). Learning was fun - for once. But mainly I felt like I was given a second chance. We all started learning something new, from the beginning again (like when you first start to read). I got my first test back and I got 100%. Then the next one - 100. Next one, yep - 100 too. To cut it short, from Year 7 - 12 (spoiler alert: I did make it past year 10. Go. Figure) I averaged 100% in nearly every assessment - I was super shitty if I got 98% or worst 90%. This teacher really turned things around for me. She simply believed in me & then just nurtured my ability. Don't get me wrong, I'm definitely more 'talented' apposed to 'gifted' because I had to and still have to work my ass off. So by the time year 8 came around, I had moved from 7.4 to 7.1 - every subject I improved in (so I went from dumbass to pin-head) What does that even mean?! So when year 12 rolled around, I scored equal with another student & received Dux of the school. Only 2-3 of us went to university. 👊🏼 Hey, year 3 teacher, your right - I'm bubbly and popular but soooo academic too ;) ... I went on to complete my Bachelor of Arts (majoring in communications and marketing), then my Masters in Teaching (graduating with exemplary and receiving target teacher status) and then went on to do a Masters in Religious Education.
So here's to you - shitty primary school, early-on-set-dementia my ass neurologist, educators that are ignorant to the needs of gifted students and you, yes you LYME DISEASE.brain.cell.stealer! I so just kicked your ass!