There is so much I have wanted to say to each of you, all the valued members of Team Bede. Things like thank you, Merry Christmas & Happy New Year but I have been struggling to post. On paper things are getting better – there is hope for Bede, his pneumonia has resolved and we made it home.
In reality things are tougher than they have ever been. Bede has been screaming a lot. Roy has not been able to work for months now because it literally takes both of us to care for him and so in every aspect of our lives we are seriously struggling. Bede is in a lot of distress and no one knows why. He screams through excessive amounts of sedation. He is on a lot of medications and no one knows why he is needing it or why it’s not being effective.
Everyone is lost.
We have been drowning. We have been struggling to retain our positivity as Bede bashes large bruises into his own head and we get anywhere from 45 minutes – 5 hours broken sleep a night.
It feels fake to share all of our happy news without acknowledging Bede’s reality. So I think it is important to do that. As always though there is light and shade and balance to be found. The distress and trauma has been peppered with a few peaceful happy moments.
Bede screamed 20 hours a day leading up to Christmas and then managed to have a mostly beautiful day with his family.
One of our gifts to Bede was an inflatable swimming pool and 100s of coloured balls to fill it. He would have just been happy with one!
Bede also turned two.
The small family party was a mix of Bede’s favourite things… Katy Perry, Lorde and mostly Jack Johnson played in the fresh air, bubbles floated on the breeze, we only served Bede’s favourite foods. Bede was surrounded by people who love him. Once again he seemed to ‘come good’ for a couple of hours. Laughing and smiling and settled.
There is joy and despair and light and shade here. I am sure there is balance to be found. I have always strived to make this blog such a positive testimony to the joy and hope and brilliant light that is Bede. But it has also always been true. This is his truth. Right now it is hard.
He has fallen into such a difficult space. His face bleeds when we change his tube tape, he needs to be held a lot, his unrest is almost all consuming. Bede is still there. His light uncompromised. Temporarily obscured but glowing. His cheeky smiles and all knowing eye rolls remain. His gentle, strong, peaceful love is permeating. The hope, the magic, the joy, the absolute resoluteness of Bede is all still there. His foundation is uncracked, never broken. In our depleted state I feel less and less like I am able to do any of that justice with my words.
Since I started writing this blog Bede has been readmitted to hospital with internal bleeding. A complication caused by one of the medications that was meant to help him find some relief, the same medication that I mentioned at the end of my last blog that we were having trouble with. His skin has become so fragile over the last few weeks that he is literally just tearing open, he is covered in rash and bloated. Yet some how he has found his way to some happiness. His agitation has lessened, his laughter is tentatively blossoming, he seems to be gaining momentum as he fights this latest set back.
He is receiving blood transfusions and everyone is keeping a good eye on him with surgery very much on the cards.
We presented to emergency department. Once we were rushed through I was talking to the senior doctor. I was listening to myself answer all her questions and hearing myself say that apart from the screaming, the tearing open, the head hitting, the needing to be held 20 hours a day and now the internal bleeding he’s fine. “apart from all that he’s fine”
I hear myself reassuring those that love him “apart from that he is good.”
I hear myself talking to bede’s teams “apart from that he’s actually doing ok”
But it’s not is it. There is no universe where any of this is fine or good or ok no matter how many caveats you apply.
As I see the bags form under Gus’s eyes, his sleeping patterns disturbed, him shakily and quietly asking about the things I can’t stop him seeing and him trying his hardest to hold it together while Bede is readmitted only a few short weeks after a 10 week admission I know it’s not ok for him either.
Slowly but surely my faith is eroded. My faith that whatever is best for Bede is what will eventuate, my faith that one way or another somehow it will be alright, my faith that as long as our decisions were made selflessly with love and Bede’s well being at heart they were the right ones, my faith that we are strong enough to do this, my faith that we could nurture Gus enough, that we could all hold on tight enough, that eventually there would be some relief, my faith in our ability to make this ok for Bede. My faith is diminishing. We are left tired and lost and diminished and so worried. We’re drowning in every aspect of our lives.
I hope as the parents of two amazing boys we can find some more of the strength they embody but we are struggling.
As we hold Bede through his distress and in hushed tones speak the unbearable words that this is no quality of life for our boy. We try and find faith, we try and hold on. Bede smiles.
This is not the kind of post we want to share, or have you read or even write but this is the truth. Bede’s truth, our family’s truth.
This is the closest to broken that we’ve ever been but apart from that it’s ok.