Joyeux et Merveilleux

Woohoo! I told you there was a joyous post a head! It’s marvellous.

sight smiles 4The last couple of babies with this illness were already totally blind when they were younger than Bede.  We knew Bede could definitely see up until about a week ago. Then he stopped tracking objects and his eyes would just wander not really fixing on anything. We thought he had lost his sight. We weren’t upset because he was still here with us, alive, but we definitely thought his vision was gone.

WELL, we had an ophthalmology appointment the day before yesterday and he still sees! He’s just a little long sighted which is developmentally normal. The change in eye behaviour is down to muscular issues resulting from the tumour.

For two people who weren’t upset we are flipping elated now!

The beautiful, graceful, mighty Bede just keeps on exceeding expectations and as always he does so with a smile. it was just the reminder we needed going into chemo. This is not a boy to be underestimated. If any body out there was going to beat the unbeatable it will be the quiet, determined, steadfast, purposeful, warm Bede. Filled with light and love and weight and life. Bede is quietly rising to meet each challenge. He shines.

You could not possibly find two prouder parents. We feel thankful and proud and are in awe of this little champion.

These photos were taken right after they told me he could still see me. It’s like he’s saying ‘I could’ve told you that mum’.

sight smiles 2sight smiles 3smile 1

I mentioned in the last post that the steroids are at times making him close on unrecognisable. You can see that when you compare these photos even just to the photo at the top of the page which was taken only a couple of weeks ago. But his smile remains, undeterred, shining through illness, through the medication and lighting up any darkness that has the audacity to come his way.

The fight is not won and I think it’s important to temper optimism with reality but at this happy win I think it’s safe to say Bede is putting up a fight and  our beautiful placid little boy is getting ready to step up and kick cancer’s ass. Its difficult not to be positive when you have a son as incredible as ours.

Keep on praying please wonderful people. I’m sure Bede is strengthened by the love he receives.

22 thoughts on “Joyeux et Merveilleux

  1. Bede bop just keeps bop bop bopping along! We love you right now, just as you are my darling Bede bop.

  2. Such a wonderful little fighter with a joyous smile that lights up the room and people’s hearts! Sending you all our positive, healing thoughts. xo

  3. Go Bede! The strength of one so small is truly amazing! The Wensley’s are sending their positive thoughts and love straight to you Mighty Bede. XXX

  4. Such a gorgeous little man you are Bede. How lucky we all are to have you in our lives. Keep being strong. Keep on keeping on too Issy. You’re doing the job of a real life super-womam/mum/wife. Inspirational little family. Sending positive thoughts and prayers your way.

  5. Lots of love being sent your way! Bede is in my thoughts and prayers!!! I’m so inspired that he still smiles and seems so full of joy and happiness despite the battle he is facing! Stay strong and positive xoxo

  6. You are right, strength and beauty comes in many forms. You only need to look at you all and see a love that cherishes now and waits patiently for a future yet defined. May Jesus hold you tight and answer all our prayers for for that future.

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