The day after Boxing Day

I am back and I am still tired. We have been busy enjoying life this past month with a trip to the beach, Christmas celebrations, a camping trip for my three big boys and having visits from one of my London sisters.

Now we are back in for a 10 day stay for IV treatment (I am learning that this is called a 'tune up' in no uncertain words.

One of my New Years resolution is to post more often. Some days go so fast I don't have time to think and I want to keep track of everything. I want my life to pause some days so I can keep my boys this age forever. They are so lovely and smell so beautiful after their evening baths that they are truly the most divine things ever.

They rock my world, make me laugh hysterically, make me want to pull my hair out and press my rewind button because I swear some days I say the same thing constantly... It annoys me, I can't imagine how they must feel!

Stay tuned, we are going to be in for a massive 2013 filled with good stable health, wealth that is coming our way, simplicity of being together and peace at being home with our family under the one roof!

 

Tuesdays

 

Thank you for my beautiful babies... May I be calm (even at 2am) and may I help them to become vibrant, inspirational, committed and amazing young men.

 

Birthday love to my travelling sister

Wishing you all the love, happiness and joy on your old lady birthday.

Welcome to the dirty thirties! It's great fun... Just wait and see.

Your strength, patience and determination is beyond amazing and you have achieved everything you have because you are so incredibly committed to building your life by your own choices.

You are an inspiration.

Enjoy Garth, looking after the little itty and be kind to your liver.

XXxxx

 

I am grateful for Wednesdays

 

 

Our first tomato harvest (that's my definition of a harvest... Not my man's though... Country born and bred, his definition of harvest is very very different).

Not too bad for first timers. Now we just need to work out what to do next? Rip everything out and start again? Let the soil recover? Or keep everything the same until it browns and withers?

XXxxx

 

Inspiration when I needed it...

The right place at the right time and I found exactly what I needed to hear to lift my spirit.

I found A-M's blog our second day in to transplant and I have been stalking it ever since. I have never commented or mentioned it before but it is my most favourite blog ever and one of the inspirations in starting my own.

Her writing is honest, insightful and her thoughts are so human, ,motherly and normal. I want to send her one of our little one's thank you cards (But I don't want to really seem stalker-ish) because her blog got me through many restless nights and was a very welcome distraction first thing in the morning after normally very long nights of morphine and mucositis.

I used to check a million times over at about 5ish in the morning to see if there was a new post... I used to try and beat or be on the same timing as her posting... Odd but nothing else to do in a positive pressure air locked isolation transplant room!

Since I have revealed my most favourite blogger, I intend to link to her site more often. She is amazing and a joy to stalk her blog every day.

XXxxx

Slowing down

 

 

I found the Slow Your Home blog last night in my search for advice and motivation to make myself of aware of time and gratitude.

Feeling a bit better today in my mood, though I am going to try to do things a little differently each day... Change my normal patterns and see how things go.

XXxxx

The rain and a rut

 

The rain came over the weekend and so did my mood. I feel like I am stuck in a rut, doing the same thing over and over again and taking everyone along with my foulness. I need a change, or a challenge or something exciting to happen (not sure what sort of exciting but it always sounds so exotic and interesting).

I know I am dealing with enough to fill my days and my time, but I want to do something different and to stay awake at night with a purpose and an outlet. And maybe to feel like I have achieved something... I know I am achieving something in raising three boys to be the best people they can be, but maybe some sort of achievement that's about me?

I don't know, my head is over thinking things and I know it needs to stop.

I think maybe today I will take a step back, take my time to do things and realise that I have all the time in the world to be with my boys and with myself. I am normally Ms Grateful and I think I am forgetting that with this mood. I am going to be slow today and hope to be more mindful. Then I'm hoping this mood will pass (which I know it will).

XXxxx

Thursdays

Best ever cheesecake.

Best ever (first ever) hydrangea.

Best ever buggy built by middle baby.

Best ever sort of day even though it was very tough on my head to focus on what is important. Nearly three weeks back in and I am homesick for home and our version of normal.

Sundays

We are very bored this afternoon... But the great news is we are expecting company! My girlfriends are bringing wine and cheese. The weekends can be the hardest when I know the big boys are hanging out together, so the girls are a very welcome distraction.

I wont see the big ones until Tuesday, so I am trying not to think about time. It is such a cliche, I want to enjoy every second but then all on one thought, I just want the next 10 days over so we can go home again. At least we go home home, many of the family's stay at accommodation houses near the hospital and can be nearly 2 years without being home home for any extended period of time.

I miss my big boys, all three of them but am trying to be grateful that at least we have an end date of home time rather than never knowing when home day was which was what we dealt with for 10 months. There is really truly no place like home (your own bed, bathroom and backyard... Oh and having all of my little family under the one roof).

X

Fridays

What a beautiful way to start the day after a very very long night is the arrival of a beautiful boy for our beautiful friends.

Little one had an odd night but we are soon going back to our oncology ward so that will mean a sleep for him and a shower for me.

Wednesdays that go on forever

You never know how strong you are,

Until being strong is your only choice.

Bob Marley

Mondays

The big boys being spoilt by their gorgeous aunt...

Little one's afternoon viewing with his beloved Jimmy Giggle and Hoot.

Sleeping until 8am

Not sure where this one came from. But Tiny Buddha is always a source of joy for me x

 

And we are back...

Little one and Wags (note the very excellent sitting, very proud of that boy)

We have been back in since last Tuesday. He wasn't breathing very well when we came for our echo and to see Dr Brain. I was not overly worried about him at the time but his cough had definitely changed. Little one had a new line and some lung testing done on Thursday. So a few days in PICU due to the anaesthetic. He is back in theatre this coming Thursday for a few more things... Organising his little body all over again.

We are back in one of my favourite wards with some of may most favourite nurses ever, so I am happy (although already over being in).

My gorgeous piece of work of a mother is with little one tonight, so we get to spend some time at home with the big boys. The bigger little one gets the harder it is to leave him. We used to have every Sunday night at home and now I can't imagine that at all.

So let the hospital distraction start... My banking and bills will be up to date in a few days time, I will blog more and I will have time to think about what needs to be done around our shoebox house and leave To Do lists everywhere.

Two new family members

Rudy and Buck (even though you are girls) welcome to our family. Please grow to be fat podgy chickens that bless us with free range beauties each day. We promise to keep you well fed and watered and as you are already receiving, plenty of attention and cuddles.

24 new hours

Waking up this morning, I smile.

Twenty-four brand new hours are before me.

I vow to live fully in each moment and to look at all beings with eyes of compassion.

Thich Nhat Hanh

 

Beautiful friends

Today I am grateful for beautiful friends.

Still his favourite girl

I am grateful for Dorothy... She makes him smile.

New things

Little one's new feed... One weeks worth.

It's a little milestone that he is now a big enough size to trial the 'big kid' feeds. We will then move on to the more concentrated version which means less volume for the day. He is a very gifted vomit boy and we are trying to eliminate the quantity of vomits. Gastro are still talking about transpyloric feeding once his peg tract has formed. We'll see how things go.

 

I am grateful for... Mr Tim Hot Stuff McGraw

Photo of Tim from his official website

This morning I am grateful for Tim Gorgeous McGraw.

His music makes me smile, it has been part of the soundtrack for the past 16 months and I always imagine being a million miles away on a property looking at nothing but the horizon each way I turn (which on some days has been more than a helpful coping mechanism).

We have a very odd collection of music in our house and lately the boys are either dancing to the Jersey Boys soundtrack, Tim, Mumford & Sons or James Taylor.

We dance around our shoebox living room and little one smiles and claps his pudgy little hands. The boys favourite is Fly Away... I think because of the counting.

Today I am particularly thankful for Tim.

Thank you for helping me to get through little ones treatment and recovery. It also helps that you are a gorgeous piece of work! But my beautiful husband thinks your wife is a gorgeous piece of work and I absolutely agree with him, she is a stunner!

A slight diversion... Smiles

Sorry, no link to where I found this, but I thought it was beautiful. Borrowed from a friend of mine who is one of the most inspirational mothers that I have met in the last 16 months. She is amazing, open, witty and honest,

It's been a while since posting and I'm not sure why. Little one is doing well, still at home, still ok and still smiling like he has discovered the best kept secret ever. He smiles like there is no tomorrow and he smiles through vomit out of his nose (due to his non existent cleft palate) and he smiles when he sees me. His smile makes everything better and his smile makes me more amazed than ever that he can smile after everything he has been through.

I can spy him smiling at me when I'm in the laundry and I can spy him smiling at our Ruby dog when she walks past. I like to think he is enjoying his life outside the Hotel Royal Children's and I like to think that he is enjoying his life as part of our little family.

He makes me smile when I see him and he makes me smile when I think about him. And he makes me grateful for so many more things than I ever thought possible.

>>>>||||<<<<

 

 

Treat or Manage?

Middle one's creative side

Sunshine time (although not too much with some of the meds we still have, oh and transplant in general)

We had a really good meeting with our respiratory doctor yesterday. She asked who we were going to use for general paeds in a few months once we move away from being under Dr brain the size of planet's care. I nearly cried. I don't want to see general paeds, I want Dr Brain for as long as we can. He knows little one better than any other doctor and I have always felt completely secure, safe and at peace with him. I am very (or maybe extremely) proud to call him our doctor and I want to stay with him forever, but I think that will not be the case as we move towards the management of little one's ongoing issues.

As transplant gets further away we are moving to the management of little one's issues such as respiratory, ENT, Gastro, physiotherapy, occupational therapy. Booking in regular bronchoscopes, grommets, planning for cleft repair and the change over for the peg. It feels weird but great at the same time. We are at the other end of the BMT process nearing our 12 months post date and I can not believe that it feels like yesterday but 10 years ago all in the one sentence.

One of our previous general paed doctors would say to me when they were trying to figure out what was wrong with little one... 'let's hope that it is treatable and then easily managed'... I understand that sentence more than ever know (maybe not the easily bit though, this young man is a lot of work, although so so so worth it, his happiness, strength and health is the best reward).

>>>>||||<<<<

I went to the woods because I wished to live deliberately,

to front only the essential facts of life,

and see if I could not learn what it had to teach,

and not, when I came to die, discover that I had not lived.

Walden, Henry David Thoreau

Hello Surf Ward... It's kind of nice to meet you

 

Back in... Once again hoping for only a few days.

It completely threw me yesterday, I was upset, crying and very very over thinking, worrying and wondering why little one can not have a week without any temp or infection. I go through the whole 'it's not fair for him, why does he have to go through this... It's not fair on the big boys' and then I move through to the I am so grateful for our beautiful doctors, I am so grateful for little one's temperament, I am so grateful for my mother and my sisters, I am so grateful for little one's patience... Overall I am feeling grateful today.

If you asked me that question yesterday afternoon when I was crying hysterically in to my mothers arms on our front lawn as she piled our big boys in for an overnight stay, then I would have answered with a whole lot of 'this is bullshit'. So I am happier with the grateful mood (oh and tired, but that seems to be the common theme at the moment and after 5 hours in DEM, anyone would feel tired).

I am grateful for little one's strength xx

Beautiful Wednesday...

Life will always be a balancing act.

 

Sunday morning

I love Sunday mornings... X

First Plasma Donation

I spent an afternoon at the Brisbane blood bank donating plasma for the first time. It was completely less daunting that I was expecting and was a relaxing afternoon with warm tea, heat packs, a very comfy chair and cosy blanket.

I was amazed about the amount of people donating plasma. The chairs were filled, donation collected and then set up again for the next generous donor. There were suits working on their blackberry's with their arm connected, there were uni students, a taxi driver and what looked like some sort of a tradie. I wanted to thank them each personally as there donations may have been received by little one at some point. I am forever grateful for such an amazing service.

I also think every day of our donor. I dont know how I can put in to words or actions the gratitude we feel for her for saving our sons life. It would have been about 3 days of pain and discomfort, but she has provided our son with a new blood system and a new life.

You can follow this link to the Australian Bone Marrow Donor Registry and see how easy it is to join if you have the capacity. If you were able to see the amazing children going through I think anyone would sacrifice a bruised pelvis (it has been described to us as being punched in the lower back by Jonah Lomu) for a few days. I personally can't wait and would be honoured for a bruised lower back if it means saving a life (although I am very biased and have never felt so passionate about it until it has affected us directly... I didn't even know what bone marrow was until this time last year... I thought it was something you fed your dog)!

I hope that if i can raise enough awareness for even a few more people to join the Registry and allow our doctors the best tissue typing option matches for their patients, I will be thrilled!

 

 

Mid week day off

Possum proofing the vege patch. Very much the vege learners and have planted lettuce, tomatoes and cabbage. The mint grows even when our boys dig it up, so that is staying strong and absolutely thriving.

Early night for all x