The Wondrous Road Ahead
A very wise friend of mine, sent me a few messages on whatsapp this week. What she said really resonated with me. It made me understand that the process we’re going through is grief. We’re grieving the life we had. The holidays, the get togethers we had planned, the ability to plan ahead and take adventures at the drop of a hat. Our life is just very different and it is going to take some time to adjust.
The Wondrous Road Ahead
And today this beautiful book arrived from my wonderful friend Jenny, titled “The Wondrous Road Ahead” the road is different, but there is no reason it shouldn’t be filled with fun and adventure.
I started the week feeling very sorry for myself. But after the week we’ve had i’m feeling better. I can see the light and I feel much better.
We are still very much living with the reality of Leukemia. Bilbo’s appetite has continued to increase, he’s hungry all the time. He is starting to visibly look different, his face is filling out and his tummy is growing fast.
On Tuesday having his dressing changed at Milton Keynes was horrific. The nurses were incredibly gentle and kind but Bilbo has anxiety about being touched and what people are going to do to him. He continually cries out “are you done? are you done?” and “can we go home? I want to go home” it breaks my heart every time.
He doesn’t trust us or the health professionals, I can’t blame him. The line has helped a lot this week but it is going to take time for him.
We braved giving Bilbo a shower. Showers are one of Bilbo’s favourite things to do, he would sit in our shower for 20-30mins playing with toys and making potions with the rainbow soap from Lush. For Bilbo to have a bath or shower now, we have to put his wiggle in a sandwich bag, then tape another sandwich bag over it and then wrap his top half in clingfilm.
He didn’t stay in the shower long, another F**K You to cancer.
Today he had another general anesthetic so they could perform a lumbar puncture and for the next two days he will have 3 different types of chemo. Tough week for him and he’s smashing it mostly with a smile on his face.
BUT he did enjoy a play date with a friend from school on Monday, he was so pleased to see Mason and I was glad to see a school gate mummy, it felt normal. The boys played with lego and giggled about silly things.
He’s been practicing his writing and we’ve started thank you cards (it will be a slow process bear with us) We have a schedule and I have a pretty whiteboard to plan on.
Bilbo is continuing to inspire us daily with his approach to treatment and the routine we now have. He takes his medicine without drama, despite hating the taste. And is often reminding me I need to sort it out.
He has had us in stitches, despite sometimes being a little moody from the steroids.
We enjoyed a trip to Ikea on Tuesday where Bilbo picked out a plant he wants to take care of, helped us pick a new mattress and demolished a full English breakfast all before his hospital appointment.
He is asking a lot of questions about treatment and what is going on, we’re taking it one day at a time.
Both boys are loving their new electric toothbrushes. No photos of Harrison but he cleaned his teeth 6 times this morning and had tried to clean his fire engine with it too. LOL
My mum and I have both given blood today, this made me feel great. It was something I could actually do that was positive for Bilbo and others who are in need. I know so many of you are giving blood over the coming weeks and months – THANK YOU!!!
And if you’d like to print off a Bilbo poster to take with you they are available to download here.
Bilbo’s grandma and aunt have completed their walk in Tenerife. The bake sale happens at work tomorrow and i’ve loved seeing my colleagues creating their culinary mater pieces on social media.
And I got a whole 90mins on google hangout with my team. Whilst Rich headed to B&Q with Bilbo I got to talk to Dina and Maren and talk about all the things I love…Neo, communities and People of Pearson.
I realise we have a lot to be thankful for, we’re lucky to have so much support and we have a choice, we’re choosing “The Wondrous Road Ahead…”