A Blog About a Bloke-Living with WHS

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. ...