Apart from everything it’s ok.

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!

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christmas night cuddles

christmas night cuddles

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.

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sucking on a syringe of watermelon smoothie

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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.

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Bede’s favourite activities at the moment are wrestling/eating Dad and getting tickles and playful kisses from Mum.

 

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.

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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.

25 thoughts on “Apart from everything it’s ok.

  1. We are right behind you guys more than ever at this time. Sending the gift of love, prayer and strength to you all. I just wanna give you a big hug Isabella. We are so proud of you Bede, hang in there beautiful boy. And Gus, you must be the coolest big brother in the world we recon.
    ❤️ Smiths ( Gabe 3B )

  2. Oh izzy, you are the strongest family I know (and i don’t know you personally only through this blog) your strength and courage shines through in every post you make, you may feel broken but you have so many people behind you sending you love support and strength, you will get through this, you all will.
    Take care of yourself and your amazing family. Thinking of you all.

  3. Darling Bede….I ask that the Angels send love and strength to you and your family, that anyone should endure so much….it is surely hard to comprehend, the reasons are beyond and unknown to us all…..in love and light I embrace you all with much love. Lyn xx

  4. I cannot begin to imagine the strength you’ve had to summon, or the pain you are going through, but as a Mom of 3 I do want to let you know I am thinking of you, and that I am so very very sorry life is so harsh and unfair for you. Things always get better, but sometimes that time it takes to reach that point can seem to last forever. You are in my thoughts xxx Hugs to all 4 of you xxx

  5. Sending you love and hope for relief and respite soon with Bede making further recovery. So sorry that you are drowning right now after all your struggles. Sometimes there is no energy to swim but enough to breath and stay afloat. Thinking of you and your beautiful family x

  6. My heart breaks for you and your family Isabella, so hard for you all but hope you gain some strength and peace knowing you have a big family of people you have never met sending love and light, hugs and hope, prayers and positives to you all.

  7. Isabella, I am so very sorry to hear that The Mighty Bede is so distressed at present. I cannot even begin to understand how tired physically and mentally you all are. I wish I could take away this pain and suffering. I send you and your family the world of Love, Light, Positivity and Strength to continue on this journey and I wish Bede comfort and peace at this time.

    Thinking of you always xxx

  8. Isabella I read your post and it made me sob. It is so very unfair how our children suffer and how senseless it is. Despite our care our love our undivided attention this monster holds us to ransom. I really remember so clearly the loss of control you are feeling and the despair. The only thing I can offer you is my thoughts are with you Issy and I am so very sorry you all have to go through this. Love is stronger than anything and it will help you to endure. Take care ♡♡♡♡ Shelley

  9. Oh hun. I am glad that despite all the pain and uncomfortable moments Bede had a few giggles and smiles on his Birthday and Christmas. He is such a strong-willed child and is a fighter. I honestly don’t know how I would cope in the same situation. Enjoy every moment and just keep swimming.

  10. Sending all our love, hope and prayers for your precious family.

    “Be faithful in small things because it is in them that your strength lies.” Mother Teresa

  11. I don’t know you and you family but I read your blog with interest. I am amazed how REAL you are through your hardship in caring for precious Bede. Thank you for that and my prayers will be more specific for you and your family. I watched my son and his wife go through a difficult/devastating time with their precious baby daughter ( she never came home) so I send thoughts and prayers to you and your family and just do one day at a time😊

  12. You all have such strength and Bede’s is an inspiration, I love to see his beautiful smiles as few as they are at the moment. My love and prayers are with you, especially with Bede’s, I hope his pain goes away and he smiles & giggles more for you very soon xxxooo

  13. I am so sorry Bede is going through such an awful time and that as his family you are really suffering in many ways from it. I send prayers that they will find out the cause of his pain and can ease it for him. Love from Canada

  14. Thinking of you all, stay strong and positive. Remember there is always hope, even in the darkest hours. You have come such a long way on this journey — Bede is a force to be reckoned and not to be underestimated! I hope his pain eases and the doctors can find a solution. Lots of positive thought messages to you all – love and light. xxxx

  15. You don’t know me…I don’t even remember how I first found your blog, but I always read every entry and pray for you guys. I’ll continue praying…and I’ll continue to hold the faith in you both as amazing parents, in both your amazing sons, that whatever is best for Bede, for you all, will be. ❤

  16. My heart breaks for you all – I wish I had a magic wand to make him 100% ok. Often in my thoughts (even more now). Sending love and bubbles for Bede. Sar in Como. X

  17. Dear Isabel, Roy and Gus. We read the blogs, as we have done since you first began this journey. The road must seems to fall away from your feet at times, but there are so many prayers going up for your family and dear little Bede. He is a blessing to your family and to us who share your blog. I can feel the despair in your words, and know you have courage beyond words. This is real and you are living this tough stuff. I am thankful to God you have these wonderful happy times in between for your family to enjoy. Hold onto each other throughout this time and I pray the road ahead will be less rocky and offer stability and peace for you all. Oh what a kid Gus is hey! Now there is a ‘rock’ to hold on to in the storm. Kate xox

  18. I hope that our prayers can help provide the bouyancy you need to keep afloat through this time. Your anguish is palpable but remember that Gus and Bede are two wonderfully lucky lads to be born into your loving circle. Together, you can do this. Love will get you through. Xx

  19. Pingback: Let’s bring Bede home. | The Bede Update

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