There has been no acute change in Bede but more and more I have people ask how we are travelling as a family. So for our family and our dear friends here is the the ‘us’ update.
We have had an incredible week at home. We spent half of it doing nothing but recharging for fear of having to be readmitted early but as the week progressed so did our confidence and we crammed an incredible amount into three days. I have tried writing about the break so I could share with you our incredible relief and happiness at such a nourishing break but it just sounds like a boring recount. Suffice to say there was sunshine and garden time and one too many drinks with dear friends more than once, roasted marshmallows and card games by the fire, we let our hair down and enjoyed the company of beautiful people. we would have liked to see more of you but relished in spending time with friends we have barely seen since the diagnosis. I saw one family member in particular that always makes me feel more of myself, puts me in my context, enhances who I am and who always makes Roy laugh. anyway here is what it looked like. Home sweet home.
It has been so wonderful getting to regroup with G. He really is our centre. He makes our world make sense. He is this smart, funny, loving, articulate, cool little dude. We were sitting around the fire toasting marshmallows tonight and I asked him what he was thinking about. He looks at me and says ‘wisdom and love and faith mum’. His light is so different to his brother’s but they are most certainly brothers and they both have immense light and beauty. He is a joyful little soul and that warmth and happiness has always been revitalised by quality family time. I’m so glad to be reconnected to him.
I loved watching G sit with Bede in a quiet moment. Brothers but almost like passing ships. Their time together so different to most brothers time but so monumental. The love they have for one another is beautiful. I used to get scared that B would become unsettled if G held him. What a reality check I was in for. B stills himself in his brothers arms and seems to be so at home. I feel like that is one of the most profound connections B will make and I desperately hope for its longevity.
Roy is going well but is exhausted and has worked hard to allow me to relax a bit more in the latter part of this break. We are solid but touchy. This is life and its real and its hard and its honest and its wonderful to be sharing it with a man I have so much respect and admiration for.
I found myself crying today for the first time in a long time. In fact I have cried a lot today. It is such a hard thing to explain because it is not a sadness or a depression it is just emotion. There is so much emotion. Fear, anxiety, immense happiness, love, joy, gratitude, deep thankfulnesss, awe, confusion, more love, hope, acceptance, doubt and more happiness. It’s not overwhelming. It’s just a lot and today it all found its release in my tears.
This evening the tears have abated but I ache. I’m not sure if its because of or in spite of all the happiness we have been surrounded with over the last week. Tonight I ache so much for my little boy. I wish I could turn back time to when he felt different, when we were teammates, when he was still able to nuzzle at my breast, when he smiled more freely and supported himself more robustly. Roy reminds me that he has come off a hellish six weeks. That he is still regrouping. That his body is tired. That were all allowed a bad week here or there. For all Roy’s reminder is I am thankful Bede has two parents, one to hold the faith while the others’ faith errs. O I just ache for him. For Bede. I don’t want to lose him.
The MRI was booked in for earlier this week. For a couple of reasons this time it came with more risks for Bede so with that new information at the very last moment we decided not to go ahead with it.
It would have told us how much control we are gaining, how successful the treatment is. Now we head into this new round of treatment without the MRI and the information it would have given us but rather with blind faith, hope and prayers.
All in all Bede, the star of this show, is doing ok. He is quiet but he is not diminished. He is fragile bit at the same time strong and robust. His warmth wraps us up. His gentleness fortifies us for the fight. At the moment especially Bede has a magic about him that is fluid and alive and is really hard to articulate. He radiates love and warmth and something great but indescribable. Something that in this moment is beyond me. He is profound.
This post was initially written in bed a few nights ago. We are now firmly back at the hospital. We arrived yesterday. It’s interesting as roy and I have sat here chopping and changing what we wanted to delete considering what I am trying to achieve. A happy post or a sad post. Life these days is balance and contrast. Opposites sitting comfortably alongside one another. There is so much happiness and gratitude and thankfulness and joy and then around the corner is frustration or doubt or sadness. The sadness does not diminish the happiness but to say one without the other seems incomplete. All of it the whole beautiful mess is our truth and sometimes it’s hard to edit down your truth.
So this is how we are travelling and Bede is ok. We are all ok. Tonight is chemo night and as the vomiting starts it reminds of sitting at the coast watching a front roll in. There is a storm to come, looking forward to updating that we are all fairing it well.
It is so wonderful to read u have all had some wonderful family & friends time. Let the luv shine❤
All my luv & prayers for the coming days/weeks xxx
Always thinking of you and your family Isabella. Thank you for sharing this with us. I wish Bede strength for the next fight. xo
So happy you got do to the ‘home’ thing. Loving you lots and sending much love
Home is a place not only of strong affections, but of entire unreserve; it is life’s undress rehearsal, its backroom, its dressing room. ~Harriet Beecher Stowe. So glad you had time at home.
Just keep bopping along Bede bop, there is here and now so much love wherever you surf.
What a wonderful break you have had – hopefully it will give you the strength to get through the next difficult period. I don’t know you, but am in awe of all of you. Bede is lucky to have such wonderful parents and loving brother and you are fortunate to have Bede. My prayers are with all of you. Xx
So happy you guys got some home time. We are praying you get more soon. Sending you so much love. Your strength and courage in the face of this is incredible. Is, Roy, Gus and Bede especially you are truly inspirational. We are praying for God to carry Bede in the palm of his hand through this. All our love, Reece & Dan xxx
Your updates are so beautiful Izzy, they truely put an emphisis on what is important in life. Although I have not had the pleasure of meeting your little man his story is a true inspiration. Im so glad that your family had some time together. We are forvever sending little Bede masses of positive vibes. Love to all your family. X
Oh Issy your posts are inspiring.
You inspire me to try harder. Do better. Appreciate more. Laugh more. Enjoy each day more.
To not sweat the small stuff.
Your posts keep me grounded with what’s important.
I thank god you find the strength to write about you and your family’s journey.
I have no idea where you go to dig down so deeply.
My heart aches that you have to,
I am praying for your little man and that a miracle be sent his way every day. He is beautiful.
All my love, Bec
Your posts are full of strength, truth, love and raw beauty… Such an inspiration to your 2 boys, family and friends. The strength you no doubt got from your cherished time at home will help you all continue this battle. Our Thoughts and prayers, and lots of positive energy are with you all always.
Christine (and the Robinson Family) xx
Your words are just so filled with genuine feeling and love for Bede and indeed for all your family, that I feel the tears well in my eyes. You have conveyed so much in your posts of just who Bede is and where your family is at. One day you may feel you can put it all into a book, because I am sure your words have much to give to the rest of us. Loving thoughts and prayers to Bede and all your family, and may strength and courage be yours.