Tuesday, December 11, 2012
I chose the 3 vacant seats on the train that were closest to the vestibule as it was the most convenient spot, travelling with 2 young children and a pram. I decided to ignore the un-welcoming looks coming from the lady we were sharing the 4 seat set with.
We had just as much right to be there.
The girls were well behaved and the lady stopped looking so cranky. In fact, it didn't take her long to start smiling at them and to respond to Ruby's incessant "hello lady!"
The lady had a giggle when Ruby thought the train was going to go in the water, and gave me a sympathetic smile when they were arguing about who can look out of whose window. Eventually my crazy kids antics had her smiling and happy.
As we approached her station, she said to me "thank you for sitting near me. My 7 year old grand-daughter has been diagnosed with leukaemia and I'm on my way to Westmead to visit her. I really needed cheering up, and your girls really made me smile".
Then the train pulled into the station and I didn't really know what to say in the next 3 seconds, but Eliza filled in for me and yelled at the top of her lungs; "it must be your lucky day, meeting us!"
The lady left the train in peels of laughter.
You just never know what the person next to you is going through.
Saturday, November 10, 2012
Sunday, November 4, 2012
I'm not ashamed to admit, I've been struggling in the last week. I have felt like I haven't been the mum I should be or the mum I can be. But what's been even worse, I have felt like my kids feel the same way.
Late this afternoon, our day was taking the same path as it has been doing lately. Kids getting cranky at each other, me getting cranky at them, setting ourselves up for a night of tears from all parties involved. It was nearly time to start dinner but I decided to take an impromptu trip to the beach. I wanted to get out of the house. I decided I should take the kids with me. (joking, joking, I was always going to take them).
10 minutes later we were down at the beach. Eliza headed to the water straight away to jump waves. Ruby, in true little sister style, followed straight after her. But she wouldn't let the water touch her feet, she was too scared.
So I went in to where the waves were mid-calf and she ran after me. Facing out to sea, she stood behind me and wrapped her arms tight around my legs. Every time a wave rolled in, she clung tighter, pressed her head against me and squealed with laughter. For 15 minutes she clung there. Her grip never faltered the sand swallowed her feet and the small but powerful waves rushed past her. She made me feel strong and happy. I was her rock, she trusted me 100% to keep her safe. It was exactly what I needed to remind me of what I mean to my kids. And what I need to be for them.
Eliza's need was totally different. She spent her time running in the water, jumping waves and chasing imaginary fish. She was content to play on her own, without any interruptions, periodically looking over her shoulder at me to make sure I was watching out for her. Which I was. I will never stop watching out for her.
We came home happy and salty.
Monday, October 29, 2012
Utterly emotionally drained after saying farewell to a beautiful soul today. I cried for my friend, who lost her sister. I cried for her mum whom I share a common bond with. I cried for myself. The sadness in the chapel was tangible. No-one wanted to leave. No-one wanted it to be final.
Amanda was well loved. Her friends grief and tributes left me wishing I knew her better. She was an amazing person and I look forward to hearing more stories about her life, when her sister is ready to share them with me. A life so full of love and living that it's hard to understand how such a progressive illness eventually takes over.
The drumming tribute calmed and grounded me. What a beautiful parting gift her friends gave her. Observed by a lone girl, dressed in colour, shrouded in sadness. A woman who has lost her best friend. What can you say to ease the pain?
Amanda did not let Cystic Fibrosis get her down. Anything I say about her will sound like a cliche. Her life was about kindness and nature and for standing up for what you believe in. In 28 years, she did more, felt more, helped more than others do in 80 years.
I know I am now going to live every day better, for having known Amanda.
Today was a sad day, my friends and I held each other and cried. Friendship is a beautiful thing.
Sunday, October 21, 2012
Most people who have had a baby diagnosed with a chronic illness start off on shaky ground. They are worried, fearful. Who can blame them for thinking the worst? Their whole world has been turned upside down, and not for the better. After time, they start to find normality. No sorry, normality is the wrong word. Nothing about this is normal. They learn to live, and see the positives through the shit. They find hope in medical advances, feel purpose in being proactive. Like most things in life, I seem to have gone about it the wrong way. I started off full of confidence and purpose. I hit the ground running. Don't get me wrong, it didn't take me long to find out what CF was about. I made sure I knew as much about it as early as possible. And to me, this was (and still is, always so much more to learn) a way of coping and preparing. Much like you explain to young children what is going to happen in a check-up so they know what to expect be less fearful, I have tried to prepare myself for whatever challenges may come. Osteoporosis, diabetes, IV antibiotics, more hospital stays, lung function decrease, nasty bug, transplant list. Can't shock me CF, I know it all. And I won't let you scare me enough to fear life itself.
But now, Cystic Fibrosis has taken on a form for me. It's dark and fluid, and just out of the corner of my eye. It watches me give treatments to Ruby, it follows me around. CF isn't scared of me anymore, it's just loitering around us. Nothing has changed with Ruby health wise. In fact, she is clinically doing quite well at the moment. But it's still there, waiting.
Cystic Fibrosis claims lives all the time. You just have to be part of any CF group online to see how often. It hurts when we lose a member of our community.
Then someone you know personally dies of CF. Someone I knew as a real-life person, separate to the CF world where we are joined by the same disease. Someone I got to know before I had Ruby and even knew what CF was. And it rips my heart out. It's the pin that pops the bubble. Her death leaves me wide open to questions I usually I would not tolerate. To the fact that this journey will not end well. No matter what I do. But most of all, I feel sadness for my friend who has lost her sister. I hope with all my heart that Eliza and Ruby will have the same kind of relationship that J & A did.
What difference does time make? If you know you are going to watch your child die, why should that hurt any less now, compared to when it is actually happening? Is the knowledge just as bad as the event? I'm guessing not. There is always more room for pain.
There are older people with CF out there. They teach us that there is the chance that my daughter can live to past her 30s. I should take comfort in this. But instead I get a bit sad that these people have something special about them, and that special something is their age. An age that is midlife to the rest of the world. Greedy me, I want Ruby to grow old and wrinkly.
I don't really know where I am emotionally at the moment, but I am happy to just drift along and see where I land. What will be, will be.
Dum Spiro Spero
Wednesday, July 18, 2012
|Eliza lending some weight to Ruby|
|The electrodes that stimulates the sweat cells to test the level of chloride|
|New toys from clinic for being a good girl|
Friday, June 22, 2012
I was heavily pregnant with Ruby and having a restless night. Tired but unable to sleep. I drifted off into that world between wake and sleep. My thoughts were crystal clear but rambling along with no guidance by me. I was going with the flow. I imagined what it would be like to hold my new baby. I wondered if all other mums imagine the same things. I wondered how mums of sick babies coped. I was only going to stay in hospital for the mandatory 4 hours and then bring my baby home. Hospitals are for sick people. Then I really started wondering what it would be like to have an ill child. Imagine if your baby had to go to that special ward with all those high tech looking cribs. Those poor mums. I wanted to empathise with them. I tried my hardest to image what it would feel like. The stress, the raw fear. And suddenly it was like looking at those 3D pics where you finally see the image pop out. I was suddenly one of those mums. Lying in my warm bed with my baby snuggled safely in my womb, I was transported to a world of emotions that weren't mine but felt so real. I felt the coldness of being scared. The confusion of not understanding what was going on. The desperateness of wanting to hear the words "everything is ok".
I must have finally fallen asleep. In the morning I was thankful that I wouldn't have to worry about anything like that.
Maybe people are right. Maybe I am the right person for this "job". Because I have held myself together. Whether that is healthy or not, I don't know. Probably not healthy, but hey, what can I do about it?
So go ahead CF, throw it all at me. Because you will not crack me. Whatever you put in my daughters way, I will fight. Whatever new twists you turn, I will counteract. I will research, I will evolve, I will advocate and I will keep my daughter as healthy as she can be. You picked the wrong person. I went through all the emotions in the comfort of my own bed, in the safety of it being all in my mind. I can focus all my energy on not making you the focus of all my energy. My family will enjoy life. You are but a nuisance. Ruby may have Cystic Fibrosis but Cystic Fibrosis does not have my Ruby.
Thursday, May 31, 2012
Ruby was on an 18 *month* course of antibiotics, she was having liquid vitamins and we were also learning about other medications she would need. We had just given in to using formula as well as another synthetic substance called PolyJoule to help with her weight gain. I made a promise to her that I would limit the amount of chemicals her body receives as much as I could. So that was my main decision in buying the necklace as opposed to using the teething gels available.
So in regards to teething, did it work? Well let's say I didn't even notice Ruby had teeth until one day I heard the metal spoon hit them. I had a good look inside her mouth, and there were about 4 pearly whites shining at me! To me, that shows the analgesic qualities in amber help bubbas with teething pains.
|Ruby at 7 months wearing her Amber necklace|
The claims get bigger and better. It draws disease out of the body, aids digestion, and absorbs pain and negative energy. Now I haven't gone and checked all the sources or looked for medical trials. But I did borrow Ruby's necklace once when I had a killer toothache and held it against my cheek. The pain halved immediately. Only drawback was, as soon as I removed the amber, the pain increased again. So I ended up shoving the necklace in my mouth where the sore tooth was. If you have ever had a toothache, you understand that you will do anything to make it better! And that reinforced my belief that amber is not an old wives tale.
I'm not naive enough to believe that Ruby's disease will be cured or fully treated by non-invasive options such as wearing an amber necklace. But I am not going to pass up the opportunity to help my child feel as comfortable as possible without the use of even more drugs. I have since got a necklace for Eliza and one for myself. It is also supposed to help concentration and memory, so maybe I should wear ten!
EarthyMamma has very kindly given us an amber necklace to give away to a reader! Read below on how to enter.
to enter this giveaway please do the following steps
- Comment on this blog and tell me what benefit of amber appeals to you the most and why
- Go to www.facebookcom/earthymamma and like their page (they have heaps of great items!)
- Make sure you are a liker of our Facebook page also (www.facebook.com/teamruby)
Wednesday, May 30, 2012
|Our CF nurse suctioning for a sputum sample|
|Showing off her pretty bandaid (and yet another specimen jar of jellybeans!)|
Tuesday, May 8, 2012
Some big discoveries have been made in the last 20 years, allowing our kids to make it to teenagers and beyond. We are always working towards a cure. It's something I hope for but something I am not relying on.
A few years ago, a company called Vertex started making real progress with actually changing the way the damaged cells work. It was the closest thing that anyone had ever gotten to a cure. With each bit of progress made, it was shared like wildfire throughout the CF community. Statuses updated, links shared, etc etc.
I was a bit of a party pooper. I never shared the news or let myself become excited about it. To me, it was still too far away. Still at "Today Tonight" level.
So it turned out that the drug wasn't suitable for the majority of the CF population. But from it came a different version of the drug which helped people with the G551D mutation.
I'm getting ahead of myself. Cystic Fibrosis occurs when a baby inherits 2 CF mutations. These mutations/genes have names. The most common mutation is DeltaF508. Ruby has one DeltaF508 and the other mutation she has is 621+1G>T. These mutations stop the process of salt being transferred throughout the cells. The drug that Vertex is producing is making that salt transfer happen, therefore stopping all the symptoms of CF.
As Ruby doesn't have the mutation that the drug targets, I didn't really think much of it. And to be honest, I thought it would be years before anyone could see the benefits.
Then I started hearing things like this:
Since starting Kalydeco (the brand name of the drug)
"His exercise tolerance blows my mind. The increase in energy has been undeniable."
"A week ago I couldn't chase my dog around my back yard more then two maybe three times. I am now able to do it 5 or 6 times before I feel like I'm about to pass out"
Sweat tests have lowered, people have been able to stop using Creon, lung function has increased.
Pretty amazing stuff...life changing stuff! The more of these things I read (and there are HEAPS) of them, the more I allowed myself to think that yes, maybe there will be a cure in Ruby's future. Once they have
a drug that targets her mutation.
So I'm on Facebook today as normal, and a post pops up on my newsfeed. And the post is written by an American mum who got Kalydeco for her daughter who has the mutations DF508 & 621+1G>Tand how she has been on it for a month with awesome improvements! So that means that there IS hope!
A long way to go with getting the drug to Australia and approved and paid for...but now I have something to focus on xx
The lady who posted about her daughter was posting because her insurance will now no longer cover Kalydeco as she doesn't have the G551D mutation. This means for her daughter to still have this drug, she needs to pay retail, which is $294,000 per year.
Monday, May 7, 2012
You see, the answer will vary depending on who you are and where we are.
If you are a doctor at clinic day, you will get the unabridged version where the answer will cover everything from bowel movements to runny noses.
If you are a close friend or family, you will be told what bugs she is fighting and how she is coping with treatments.
If you are a casual acquaintance that I bump into at the shops, you will probably be told "not too bad thanks"
Because although I really appreciate you taking the time to ask, and for keeping Ruby in your thoughts, I find it hard to answer the question without either grossing you out or boring you to sleep. I guess the technical answer would be something like this;
"she is a bit congested at the moment, but her lungs are clear. Her vitamin D level is borderline and her Vitamin A was low so she will have a blood test at the end of the month to re-check. Her body is responding well to the Tobi although treatment time is sometimes very stressful. She is eating well but her weight is low. Thanks for asking!"
But I guess the most important information can summed up like this;
"she is really happy at the moment, being cheeky and always smiling. We are working really hard to keep her healthy, and although her body is having a bit of an internal battle at the moment, she isn't doing too bad. Thanks for asking!"
So there is the answer to the simple question! (I was always one to over think things)
Wednesday, April 11, 2012
Our clinic have changed the way they operate. We get assigned a room to stay in and everyone comes to visit us. This means that there is no separate clinic for different ages and different bugs as they used to do for infection control. We all go on the same day, but as we aren't sharing a common area (like a waiting room), the risk of cross infection is much lower.
So when we turned up, I couldn't stop looking at all of the other kids. It sounds strange, but I hadn't seen a CF "big kid" before. I couldn't help but think, that will be Ruby in 10 years time. Of course I know that Ruby will be going to clinic forever, but this was a little glimpse into the future. Instead of feeling sad about it, I was just a bit curious and fascinated. These kids were confident and self assured. Some qualities I already see in Ruby. The nature of the disease?
First things first, the weight in. And we have a gain! In fact, it was quite a good gain and Ruby now weighs 10.44kg. She is in a good proportion to her height. This keeps the dietitian happy and we don't have to discuss supplements of any kind.
Next we see a respiratory doctor . It's not her normal doctor and I feel like we didn't get as much out of the consultation as we normally do. But he said Ruby's lungs sounded clear and he is going to get some info to me about the phthalate that is still used in Creon.
After the doctor comes the CF nurse. She brings in the suction machine to collect Ruby's sputum. This will be tested for any bugs that may be growing in her lungs, but we a re particularly looking out for how much pseudo is growing. If the growth is heavier than last time, despite being on very strong nebulised antibiotics, we will be admitted to hospital for IV antibiotics. (please please let's hope the tobi has done its job)
Sputum collection always causes tears but is soon fixed with a specimen jar full of jellybeans!
|Checking her sats|
So now our treatment regime will be:
chest physio therapy and vibrations
twice a day. It should take about an hour each time. We borrowed a new nebuliser from clinic as the previous one we borrowed seemed to take so long for each treatment. We are looking at buying our own nebuliser because let's face facts - she is always going to need it. They range from $450 to $1900.
What else? Oh, we picked up some meds.
That's about it. Ruby slept the whole way home. Our next visit is at the end of May. Now I will go online to my CF mumma friends and have a good debrief. xx
Saturday, March 24, 2012
We get told some pretty scary things about CF from our kids doctors. Lots of it won't affect you. You don't have to worry about how to help our kids avoid diabetes or osteoporosis, you don't have to measure up the pros and cons of sending our kids to swimming lessons, you don't have to make sure that physio is done properly. And we don't expect you to worry about all of those things. That's our responsibility, our priveledge.
One of the scary things we are told about, is how a common cold, and other illnesses that are minor to most, can affect our child in the long term. What might be a day off school for your child, could very easily be a hospital admission for ours. A week of illness for your child could equal permanant lung damage for ours. Your child will feel better and be better. Our child may feel better, but all of these "little" illnesses shorten our childs life. That's just how it is.
Again, not your problem. Or is it? Being the mum of a CF child can be stressful and sometimes isolating. We don't want to lose friends, we need you more than ever. But we know more now, and our priorities may have changed slightly.
The good news is, it's easy for you to still be a good friend! There are just a few simple rules. These should help you out.
Accept that Cystic Fibrosis is serious.
One of the hardest things about CF is that our kids don't often look or act sick. And we don't really like reminding people. But the fact is, our kids have an incurable, life shortening, chronic illness that needs to be managed every single day. They are not the same as other children. We are not being cotton wool parents, we are keeping our children as healthy as we can for as long as we can.
Learn the basics.
We don't expect you to become an expert on the subject, but knowing the basics of the disease will help you understand why we are so anal about some things! In the smallest nutshell in the world: Cystic Fibrosis is a disease that causes the thickening of secretions in the bodies organs. This means that germs like to breed in the lungs, causing irreversible lung damage and eventually respiratory failure. If you would like to know more...ask! Your head won't get bitten off, I promise. Or you can check out the links at the bottom of the page. And no, they won't grow out of it.
Practice good hygeine.
Our kids don't need to be stuck in an antibacterial bubble. Practicing normal good hygeine will protect our kids. Wash your hands often, cover your mouth when you sneeze or cough. If you want to be a super good friend, let us know that you know that we want you to know! ie "oh give me a cuddle of your bubba! I can't wait to get my freshly washed hands on that gorgeous bundle of joy!" And of course...
Stay away if you are sick!
(or smell like smoke).
This is the most important point. Read the start of the page again. Your minor illness is our major fear. We won't get offended if you cancel a playdate, we won't hate you if you can't come to our dinner party. In fact, we will love you even more if you avoid us when you or your kids aren't well. This is the part where you can help us with managing our child's illness. Please please please let us know if your child has been sick. You don't have to decide if we should stay away or not, we will make the call. But we need to be able to make an informed choice. The smoking part is self explainatory and common sense.
Don't turn us into the bad one.
These rules will never change. Our child will always be sick, you will always need to practice good hygeine, we will always want to know if you or your kids are sick. Please don't make us bring it up all the time. We would really really really appreciate it if you remembered these points. It's no fun telling people over and over to wash their hands or cover their mouths. It's frustrating and sometimes embarrassing, but we will do it if we have to. We hope our friendship is worth the trouble.
Kiss and cuddle our kids!
I hope I haven't scared you off. The rules aren't too tricky, and our kids (like all kids) need all the love and good times that they can get. Big cuddles are awesome, tickle time is hilarious, holding hands is precious. If you are well and washed, please don't treat our kids differently.
That's pretty much it! Our lives changed dramatically when we got this diagnosis. We try to keep things as normal as possible, but it's not always possible. Our friends and family are so important to us, our childs health more so. We need you, please be there for us.
Wednesday, February 22, 2012
This Saturday, a team of people are going to do an amazing thing. They are going to walk 65km in a day. That's a BIG walk, probably bigger than what a few of them realise!
To be honest, I don't really care if they do 65k or 65 steps. The fact that they have joined our team is enough for me. That in itself speaks volumes.
But for the ones who have a personal goal of going the whole distance and are looking for extra motivation, this is for you. When you are struggling for breath, when your legs are wobbly, when the last lap seems so far away, think of this.
Think of Ruby's start to life, a major operation at 3 days old - take one more step
Think of the little needles and tubes that she had in NICU - take one more step
Think of the scars that some of them have already left - take one more step
Think of the infections ruining her lungs - take one more step
Think of the invasive tests and prodding she has at every clinic visit - take one more step
Think of the many meds she has to have to survive - take one more step
Think of the physio she has to do every.single.day - take one more step
Think of the years that she will miss out on - take one more step
Think of the way that her breath will be laboured (like you on your 5th lap) - take one more step
Remember that this is how it will always be for her - take one more step
Think of the cure that is currently being worked on - take one more step
Think of the difference YOU are making - take one more step
Think of how much this means to us - take one more step.
Tuesday, February 14, 2012
I can feed her, dress her, bathe her.
But I can't heal her inside.
I can give her physio and medication.
But I can't make her well.
I can cuddle her through needles and worse.
But I can't stop them being necessary.
I can raise money, educate people, spread awareness,
But it will never be enough.
I can, and do, love her with all of my heart.
But I can't save her.
Friday, January 20, 2012
On the 3-3-2011 we welcomed our Hudson Trevor Kingsley into the world. Fourth time was another 'blissful' labour, no complications and just as smooth and kind to me as the other 3 were. Hudson was tired pretty much from the time he was born til days after he was diagnosed. His body temperature was also quite cool and getting him to feed seemed impossible and he was almost 12 hours old before having a feed from me. But of course at this stage it was just put down to how hard of a job it was for the lil guy to come into the world.
I can actually recall quite a few times during my pregnancy that I had some inner feelings that all would not be as well with baby number four and even that it wouldn't be something we would pick up on right away. But of course I had him and those thoughts were forgotten until my best friend reminded me that I had those intuitive thoughts. A few days after being home the midwife came to do the routine heel prick test. I remember how lovely she was, complementing me on my lovely children and the great family I had made and even took a family photo for us just before she left. Before leaving her famous words were 'no doubt you will hear nothing from me but as per the other children, you only will if there is something wrong' Again another lil pang in my tummy that I was not as confident in hearing nothing like I was with my other babies. In days that thought was again gone and didn't think of it again.
One gorgeous sunny morning (I know it sounds corny but it was, that kind of weather always makes me feel at my best) I had dropped Lachy off at school, came home and was in the lounge with my 2 girls and Hudson just admiring them loving him and enjoying him. I was texting Steve back and forth, just things like how much I love him and thank you for giving me another perfect child, how lucky we are and how happy I am while snapping away with the camera and Hudson and the girls. Within minutes of this unreal day that all mum's love to have and live for, after all its the reason we have them isn't it? My mood, life world had turned from the happiest to well, the worst I have ever felt in my life. The telephone rang but as I was in the head space of the moments I was sharing with Steve. I didn't really take note of where the lady who was on the other end said she was calling from. I snapped out of it when she asked how Hudson was, I assumed it was the health center nurse calling to let me know when I could bring him back in. So I was in my la la land saying, 'Oh he is fabulous, actually he is the perfect baby, he sleeps well feeds well and seems very content (god only knows how the lady on the other end must have been feeling, something like 'this poor girl is going on and on about how fantastic things are with her baby and I have to tell her this terrible news). Eventually I stopped bragging about my perfect baby and she said. "Erin I'm calling about Hudson's birth screen test." (My heart was over pretty much at this point) One of the things we test for is Cystic Fibrosis and its come back that Hudson has tested positive. I'm crying beyond control at this point. The house starts closing in around me and my head feels the pressure like its been put in a vice and someone keeps tightening it. The lady is still talking saying something like 'call who you need to call, I'll give you an hour before I call back to let you know what you need to do". I don't recall hanging up the phone, I can remember that I was trying to call Steve but I could not work the phone, I must have got a text through to him and my father in law. Poppy had called me back and I was crying to him letting him know I needed them (him and nanny, Steve's parents) to come down to be with the girls cos something is wrong with my baby. Before I knew it Steve was inside the house home from work, that is how I know I must have managed a text. he himself was very confused what could be so so wrong when only minutes ago he was receiving texts from me about how happy I was and all of those good things and I told him, Our baby has Cystic Fibrosis and we cried and we cried. It's only as I write this I am now wondering how our girls must have been feeling [:(] )
The hospital called back and we were told we needed to take Hudson in right away, I don't remember the trip to the hospital at all. First we met the genetic counsellor who explained how it came about how Hudson has CF and a little bit about what it actually is. I will say right now, we too were not at all familiar with what it was and I had actually mistaken it for CP (Cerebral Palsy) because when they called I remember taking him out of his bouncer and making him move his limbs around and looking at his head and screaming no he doesn't have it he is normal he is completely normal! I honestly thought we would get to the hospital and they would soon learn they had given us someone elses test results and mixed them up under Hudson's name. But it wasn't true. We were taken across to the hospital to meet what would and has now become, our CF team, our CF Monash family. we were taken to a room and introduced to more people than I can remember, I didn't really look at anyone, just their feet, there were so many different pairs of shoes. I held Hudson, he clung to me like a lil koala bear and he slept, as he always did. I can remember thinking. Who are all you people? You have no right to bring us in hear and turn my families world inside out and upside down with one phone call. T he sound of them all rusting through papers and taking notes was so so loud I wanted to scream at them, and for the lady that just constantly spoke and spoke and kept giving us all this information about how we would have to manage our lives I just wanted her to stop talking, I wanted her to shut up, in my mind I swore to god if another person walked in those doors and said, you will now meet so so and an they will be your such and such I was going to storm out of there with my baby and never go back. But I knew I couldn't, I was now at the mental point of knowing that the information all of these people had meant life and death for my son, these people would be the people who will forever help us keep him alive. These people were not to blame, they kept telling us 'its not your fault, there is no way you could have known' and that was just my problem. No one stuffed up majorly while I was pregnant, no midwife stuffed up while I was in labour, and we didn't stuff up after taking him home. There was no one available to point the finger at and yell and scream at to get my hurt and anger out on. No one. Because Hudson having CF, is no ones fault. Its a genetic disease that Steve and I had no idea we were carriers of to know that it was a possibility that one day we may have a child that had 1 in 4 chances of having CF. So our dear Team Hudson supporters, that is how Team Hudson started. After much sorrow and sadness (there still is and no doubt always will be) we knew our energy had to be used for the great of good and top make change for our dear lil Hudson and all lil CF sufferers out there. I told Steve, there is a reason Hudson has CF and as vain as this sounds, I believe with my whole heart its in his journey to have it, because he is so loved and instantly liked by all that cross his path that people wont be able to resist want to help fight the CF fight with and for him. because of how loved he is I know that he will make so much change for the greater good for this horrible disease that til this day, still takes way to many precious children from their loved ones. Because of Hudson I believe so much good will be done. Even if its just awareness of the disease, I cant ask for more than that, cos as I already admitted, until Hudson was diagnosed, we had no idea what CF was. It is the mission of Team Hudson to spread awareness of CF to anyone and everyone we can. Cos lets be honest, no one put money into something they are not educated on so I know that education will equal much more funds being raised and that will lead to our CFers having a longer easier managed life that what they do as it stands. I'm his Mummy, I'm his voice and that people, is not my job but my dream and my goal. Thank you all for helping us achieve it.
Bless you all [♥] Hudson's Mummy Erin. ~BREATHE~