A Blog About a Bloke-Living with WHS

Somehow, somewhere, I am being guided to start writing again. Think I may, think I might (have this wish I wish tonight). I do miss writing. Our lives have changed so much since I stopped writing in here. We are the same. Yet so different. 2014 is nearly here. I already know some of the things that will be happening next year. Just like I knew 2013 would change my life forever. I guess I am back...in a way...

Tears fall from my face often these days. Out of the blue they appear, drifting slowly down my face. Most times I let them fall. Sometimes, I blink quickly to force them away. I am still here, writing, praying, coping-barely. Ryley has been sick this week and it has rocked me to the core. I didn't expect such a strong reaction, especially as this is something we have faced many times in the past 12 years. It was the words "I have checked for internal bleeding and I can't seem to find any, that doesn't mean there isn't any, just that I can't see it. If he keeps coughing up blood, present at the emergency department and ask them to page me" that instantly made me want to throw up. My brother bled internally in the final days of his time on earth. In that moment when I heard those words from Ryley's paediatrician, a shiver went down my spine. I hardly heard the words the doctor spoke after that. It was like I was frozen in time. It is onl...

I can't breathe. The grief is filling my body, and I let fear in. No words can give me comfort, for I am too far gone The tears they fall, my heart is heavy. This pain is taking hold of me. I am struggling to fill myself with love and light. Instead I am angry, hurt and afraid. I am nothing but a lost soul drifting along Waiting for the brightness to appear. All sense of knowing disappears Until I find Love again.

After much thought, and with a heavy heart, I have decided to close this blog to the world wide web. The recent passing of my brother has rocked me to the core. He was the one who helped me set up my originial blog (some long time readers would remember ryley.net- I blogged there before blogging was even a 'thing'). Jacob was so far ahead of things in the online world and he was the one who encouraged me to keep writing (even when I didn't feel like it). He is not here to read, comment, and encourage anymore. So, for now, it is goodbye to Blog About a Bloke. I have made so many wonderful friends through blogging, and have received so many emails from families all around the world who have a child with either a disability or Wolf-Hirschhorn Syndrome. These friends are the ones who have continued to be there, even though I am not blogging much anymore. I have not yet fully decided what I am going to do with the blog. I may continue to write in private, I may ju...

I have always loved this song and it has even more meaning now. Missing you Jacob. Every single day, with every inch of my being. In my thoughts, in my mind, you are still here. Please. LOVE who you love. And SAY that you do.

May your soul return to Knowing That Love is all you need. Send fear away and choose to be One with God, for then, you will see. Your shining light, And Our Love. May your spirit live on in peace. Please just Believe. Missing you every day. Your biggest sister Anna, your brother in law David And Uncle Jaypeg’s nephews, Ryley and Braeden. Never far from our thoughts, always in our hearts.

Jacob, Me, Petra and Bede This is a photo taken of a photo, so forgive the poor quality. But it is the last ever photo taken of me and my siblings. Who knew it would be the last? Today I just feel empty inside. I feel nothing. I am trying to fill my heart with love so that I can keep going, but it is hard. For the first time, I don't feel Jacob around me. I keep seeing the photos that my Mum puts up on Facebook and I just want to silently scream, "Jacob come back". There is comfort in knowing where he is right now (well, sort of), but the day to day reality is difficult to get through. I forced myself today to take Braeden to school. To go out in public and be near people. I think that is the hardest thing for me. I want to just sit in silence on my own. I have never wanted to be more on my own than now. But that isn't healthy I guess. Today I will put one foot in front of the other. I will breathe. I will appreciate and be grateful for the t...

I don't even know how to write this blog post. I guess I should start by thanking everyone for the messages of support my family and I have received in the past few weeks. For those not on Facebook who might not have seen my post on Friday, it read like this: My brother Jacob entered eternal life yesterday and is back home with God. He is now at peace. Thank you to everyone for your prayers, messages and support through this very difficult time. I carry your heart (I carry you in my heart). Things will be never be the same. Jacob, my brother, passed away after a short illness on Thursday 9th of May 2013. He was 31 years old. Even as I write that I still don't believe it. How can he be gone? I only spoke with him on the phone the day after he went into hospital and as usual, he wondered why I was ringing him when he was only going to be in hospital briefly. In fact, he told me, he was planning to go home and then just come back in on Monday to have the tests done. ...

My brother Jacob is right now in an Intensive Care Unit in Latvia fighting for his life. Without details, for now, he is in a critical condition. This is his journey and I believe he will come through this. But please, if you believe in the power of pray, I ask that you pray for him right now. If you believe in positive thoughts, I ask that you send them. If you believe in the healing light and energy, I ask that you send it. And now these three remain: Faith, Hope and Love, and the greatest of these is Love.

http://pinterest.com/pin/411868328391991297

As you know, I write a post every year, urging people to give what they can to a cause close to my heart. We thankfully don't spend as much time down at the RCH as we used to, but we are forever grateful to the wonderful staff who take care of the kids everyday. Even $1 can make all the difference! For me, Good Friday is usually spent eating hot cross buns, fish and chips for lunch and a day of watching the appeal on TV. This year we will be at the farm, so no TV. But the rest of the tradition will remain. Hope everyone has a wonderful Easter break. Stay safe.

Source: facebook.com via Amanda on Pinterest

Your child runs away from you after school and hides. Come on. Nod your head like it has happened to you. Sigh. Braeden and one of his friends decided to run off from myself and the other mum tonight. Actually, from Braeden's account, it was his idea to run off because he wasn't ready to go home. After what had become a slightly frantic search, the boys appeared from over near the church. My heart started beating again after that. He is showing me how strong he is here. Not about to throw it at me...

Today we decided to do our bit for Clean Up Australia and head up to Lake Esmond. The kids had a great time and we managed to collect quite a bit of rubbish! It is a shame that we even have to dedicate a day to cleaning up our environment. It shouldn't be left with rubbish everywhere in the first place!

I want to take a moment to express my absolute gratitude for all of my friends and family who have voted, shared and joined the Vote 4 Elliott group on Facebook. This whole experience has been amazing. This is life changing for Liv and Elliott. I think that every person who has been part of this has taken something really special away with them. Helping each other, even perfect strangers is not hard. It can be as simple as the click of a button on the computer. It can be as simple as a smile. It is as simple as love. There is more to come for Liv and Elliott, of that I am sure. And I believe, that for everyone who has been a part of this, there is something inside of them that has changed.

Yesterday I posted about  Olivia and Elliott  and their quest to win a competition that would be life changing. As I write this, they are now in the number ONE position. This is because of the outpouring of support we have seen in the realms of social media. I must admit, I have voted for various things in the past and thought: "What's the point?". I have now seen with my own eyes just how much my vote does count (and yours, and yours and yours). In less than a week, Liv has gone from no votes and a link on her Facebook page, to number one position and over 7000 people following her  VOTE 4 ELLIOTT  page. We can't stop now. There is still 5 days of voting to go. We must keep her in that winning position. So what can you do? Vote of course! Never again, at least, not in the Cressida  will take you straight there! This will change Liv and Elliott's lives. By making your vote count, you are saying that we all count. Supporting each other is one of...

I am currently watching something really huge happen in the world of social media. I have seen this before. But never actually been a part of something that involves one of my close mates. It is pretty awesome to watch actually. As long time readers of this blog would know Liv is mum to Elliott. Liv is one of the most generous and giving people I know. She is also a sole parent doing a wonderful job of raising Elliott. Being a parent is hard. Being a parent to a child with a disability is harder. Being a parent to a child with a disability, while on your own, is harder still. Liv recently entered a competition to win a brand new car. Not because she would just like to have a fancy car. But because she NEEDS a car she can convert, so Elliott can travel in his wheelchair. The car she has currently is pretty old, and she is having to reach in awkwardly to put Elliott in and out of his car seat. These type of transfers are not sustainable (as any good physio will tell you). ...

Dear Ryley, Every year we celebrate each birthday milestone, and somewhere, somehow we breath a little sigh of relief that we have made it through another year. You are 11!! Where oh where has that time gone? Each year I can't help but remember that moment when I first laid eyes on you. The instant I saw you I knew you were perfect, I fell in love with your whole being, which is why it was so difficult when the doctors started pointing out things that were 'wrong'. I have no doubt some would call it denial, but I refused to look at you as if you were anything less than perfect. And you know what? I have never thought any differently about you. You are perfect to me (and your Dad and your little brother). I see your frustrations. I see your sadness sometimes. I see your acceptance. I see you Ryley, for who you are; for you are a beautiful kind soul, who loves unconditionally and continues to teach us about what that truly means. What do I hope for you this y...

I keep opening up my blog and staring at the blinking white screen. For some reason, I just haven't been able to put the words into a proper blog post. So many garbled words keep jumping out on the page, as I stumble over the constant thoughts. I want to write about issues, things that are bothering me, the kids, the stuff that no one else likes to write...but for some reason the posts that are half-written in my head seem to stay there. *Shrugs shoulders* Today, my baby started school. Yes. My baby started school. Although, he isn't exactly my baby any more, and really, I should be referring to him as my youngest. But there was a twinge of my heart today as he cried and clung to me. I couldn't bear it really. So, for his sake, I walked away and left him to cling to his father. My tears flowed, and I could feel the other parents glancing at me, some with sympathy, some barely containing their own tears, some with amusement. I didn't care. Braeden was so...

The fact is, my kids are outdoors kids. Being cooped up inside when it is too hot equals a day of complaining, 'that noise', and awful behaviour. Actually, chilling out is not really in Ryley's vocabulary, unless he is really tired, or sick, or a bit overwhelmed. So, I decided to do something about it, and do some things that I normally wouldn't do without David with me. We went camping. Yes, you read right. Camping. As in, the great outdoors, a tent, sleeping bags and PEG feeds. And we had an awesome time!!! It did help that we were camping in our best mates tent with her and her girls. It did help that we were at the beach and there was plenty of stuff to do. Despite the fact that Ryley didn't really sleep, and PEG feeding in the outdoors is not entirely straightforward, we managed it all quite well. So. We headed off again this week! We went over to South Australia (Penola region) to stay at a friends house. It was great, but the kids didn...

Dearest Braeden, Here we are at your 5th birthday already! Some days I just look at you and wonder where all that time has gone. From the moment I cradled you in my arms I knew you were going to be bring a light to our lives that we could never have dreamed possible. Every day you wake with a smile and an incredible lust for life. I have watched as you have grown into this amazing young man, who is so compassionate and understanding, it puts most adults to shame. You have an insight into life that many people spend a lifetime searching for. Braeden, you have such a sense of humour! I love that about you. I will never get sick of you asking me questions, even if I can't answer some of them (for example, I can't tell you who decided that red means stop, but I will see if I can find out!). I love that you love to come for a run with me, and that you love bike riding and horses. These are some of my favourite things too, and I know we can share these activities for years t...

Source: Uploaded by user via Em on Pinterest I believe in God, who is seen, and unseen. I believe in Angels, who both walk the earth, and walk alongside us. I believe our physical body is merely a vessel that houses our spirit, which is why it doesn't matter what you look like, or whether you are more or less able-bodied than the next person. I believe in love, for pure love is all we really need (and if we look closely, we are all loved by someone). I believe in peace. I believe that our path is already laid out before us, that we are all on a journey. I believe that we make choices everyday, and that these choices are part of the journey. I believe in suffering and the hard times, because despite it not feeling like it, we often become stronger, or learn an important lesson. I believe in being strong, but that we all need someone to lean on for support. I believe that people come into our lives for a reason. I believe in nature, for it is the comfort our soul...

Welcome to 2013 my friends. Blog decision: Keep writing. It took me a while to come to this decision to be honest. At one stage I felt as though I had nothing interesting to write about anymore. But this year is different. Last year was about recovery for us (which a rare few will understand fully what I mean by that), but this year is about healing, heart, love and spirit. What do I mean? Have I become a weird mystical hippy? No. But I feel very strongly about my direction this year. It will start to filter through in my writing. Source: google.ca via Anna on Pinterest I hope everyone had a wonderful Christmas/New Year season. Ours was filled with the smiles and laughter of our boys as they unwrapped their presents and the joy as they played with the things they had received! There is a wonderful tradition in our part of town where the local CFA (Country Fire Authority) drive around the streets with Santa in the firetruck throwing out lollies to the kids! Not on...