Monday, 24 June 2013

weakness turned to strength

I still believe this world to be a beautiful place.

But i do see so many struggles.

I see hearts breaking, and plans failing, i see sickness that seems so unfair. i see why some of us would look at it all and think there is no God. Looking in on tragedy has that effect sometimes.

But i can also tell you, that God will bring out your greatest strength, THROUGH your greatest 'weakness' .

For those of you who are not 'faith ies' (like my darling friend Sara calls me) bear with, you don't have to be of the same belief to learn from each other.

My son Austin is 7 years old, and this past week he has been attempting to access himself, on a daily basis to give the medication he needs to make his blood clot 'normally'.

Did i mention he is 7 years old? at 7 years old i was concerned with what reading level i was on, and learning the words to Celine Dion songs.
At 7 years old my beautiful boy has asked, persevered and successfully accessed his veins one handed.

That is no easy feat. Many trained paediatricians will miss the vein, let alone doing this one handed. Totally amazing. I would like for you to think about whatever struggle is going on for you right now. I want to encourage you that God will find a way... Not only that, but he will turn your struggle into your strength.
If He can give a 7 year old boy the accessing skill of a doctor. He can do wonders through you.

The world may look at your situation as a negative one - too often when people learn of my sons diagnosis of haemophilia, there is a look of pity.
But you know what? through this, it is one of our greatest strengths as a family. For all of us, we are better people through it.

Through this, Austin has grown inner strength and skills he would not have otherwise known of.

Be encouraged people, He loves you x


Monday, 17 June 2013

Beard hair bread

I remember years ago having my little sis stay at my house, she had made ham sandwiches, and in eating hers, pulled a finger nail out of her mouth!!! Ughhh!

Another time i was making sandwiches and on inspection of what i thought was a wholegrain in the white bread, saw in fact there was what looked like black beard hair in the bread... not nice, let me tell you, considering half the loaf was already eaten. I sent it back to the company who in reply gave us a $10 voucher to buy more their bread... mmmm. Seemed legit. In the letter they sent me,  they confirmed that it was beard hair. Nice.

One time i was at a friends for morning tea, and the apple turnovers i had bought from a local bakery had onions in. Nice.

This brings me to tell you about a dream i had a few weeks ago, in the dream i was making bread, well, i had started by putting the flour into a large bowl, and when looking at the flour it looked a bit grey.
Looking closer still, i see a few short, thick, black hairs, very much like beard hair - in MY flour!!

I started to pick the hairs out, but the further into the flour i dug, the more hairs i saw. Eventually i was looking into a bowl of beard hair, lightly surrounded by flour.

Dismayed, in my dream, i threw it all out, knowing there was no point in making anything with this flour.

It wouldn't matter if i had made pikelets or a wedding cake, if i had iced and decorated, using all the finest ingredients.... If i had used that beard hair flour, no amount of presentation would convince people it was a good offering when they tasted it.
It may look nice from the table, but as the saying goes -  "the proof is in the pudding".

Moral of the crazy dream?  Get rid of the stuff that will ruin the recipe, the stuff in life that will ruin the end result. Get rid of the beard flour. No one likes beard hair bread..... No one.

Sunday, 16 June 2013


 Driving the kids to school this morning we waited at the road works for our time to pass. Eventually we were on our way again, and maybe for 100m or so, the speed limit was 30km.
The cars in front of me were all driving 50 km, and it wasn't until i looked down, i saw that obviously i was too. There were cars behind all following at the same speed, and i had a passing thought on how even though the speed limit is set, for our safety, we choose to ignore, or to follow the person in front at the speed they are going. How often in life do we do this? ... God has set the speed limit for us, sometimes it is 100km, sometimes it is 30km  and it is for our own safety, so we arrive at our destination with life.

Has God put out a 30km sign post up in your life? 
Is he asking you to slow down?  or is he asking you to speed up?

Anyway, this post was meant to be on attitudes... our Eden came home today wearing a band made of cardboard, with a little scripture on it, " i can be obedient because God is with me"

My first thought was  - "did all the children get these, or is the teacher trying to tell me something??!"

My second thought was " this is awesome, in a public school they would not have this teaching, and for that i am SO thankful"

So we start talking about what it means to be obedient, something i am sure most 5 year olds struggle with! (something all of us struggle with at times)
My little girl says she will be helping me because the baby is coming soon, and she will listen to me. WONDERFUL!! i think to myself ...  (Thank you Mrs Grammar!)

.....About 15 minutes later, still in the car, my eldest son Austin had been reading his book, and from the back seat asks his sister if she would put his book away for him, as she was closest to his bag.

"No." was the response.

I raise my eyebrows and ask her what happened to 'love one another and help one another?'

Her reply?........ "I didn't pick that one".....

I had to laugh! How many times do we think we can just pick and choose from our walk with Christ? Like only some of it applies to me? hehehe - i know myself, it isn't an easy walk.

Forgive one another (always)

Love one another (always)

Reach out to the poor and the needy (always)

Be humble (always)

In all you ways acknowledge Him (always)

Do things for his Glory, and not for your own (always)

Trust Him (always)

As i said, it's not an easy walk.  Fortunately for me - and for you - there is His grace :)

Caroline x

Thursday, 13 June 2013

Brave little hands

So the background story is that John, our 2 yr old little boy who has severe haemophilia A,developed inhibitors in March, the day after his 2nd birthday.

He has had a port insertion last month, and 3 weeks later the disintegrating stitches caused a reaction, and his body rejected them, this meant he was sent to Starship hospital in Auckland for 10 days of IV antibiotics to get rid of the infection that followed.

He arrived in Starship on a Tuesday, and started the course of antibiotics. The following day the line in his arm failed, and they accessed his other hand, which went well, my husband had bathed him, and the doctor doing the accessing was very calm, and got the vein accessed on the second attempt.

My husband was concerned that the new IV site was tight and swollen over his little hand, on Thursday and so when John was seen he mentioned his concerns that  it was a bleed. Both a haemotologist and a hematology nurse thought it was edema (fluid retention) from the antibiotics. Andy was told his veins would be sore from the IV, and the swelling in his fingers was just the fluid.

On Friday, Andy requested a new line be put in, which was done. It was when taking off all  of the bandages that the extent of the puffiness was seen. 

I was at home in Whangarei, and i was also very concerned, as from what my husband had told me, John was not using the hand at all, and it has all the signs of a bleed, without coloration.

later in the day on Friday, 2 haemotologists , and the heamotology nurse saw John and again thought the hand was just edema.
On the Friday afternoon,  John was still not using the hand, and it was it was really puffy, even with elevating it all day.

On Saturday,  his hand was really swollen, the new line was not really working, and by 3.30pm, was in no state for antibiotics to go in. It was pulling back ok, but painful when flushing. because of this, Andy said that John could not stand the pain enough for the antibiotic, (30 mins of pushing through) and so asked that they organise by 9pm, a new line be put in.
Shortly after that the swelling and pain was so much in the other hand, that he felt treatment for the bleed was needed immediately. 1 ml of Nova7 was administered through the painful line.

 Andy requested the haemotologist on call come in to view Johns hand, as he was convinced it was bleeding in to the tissues. It was 7.00pm.Andy wanted a plan to treat the bleed.
No heamatologist arrived, or gave a plan. and so Andy asked again, that they find someone to access John so that more nova7 (factor 7a) could be given to halt this bleed. 

After a horrendous amount of 12 failed attempts, by an Ed doctor and a surgical registrar, Andy pushed through the 1ml of fluid needed in to the sore line again, and again 2 hrs later. The whole time Andy is wanting someone to see the port to see if it can be cleared for use, as the whole night was so traumatic.

Sunday morning Andy 'tells' the new nurse on duty to call a surgeon to look at the port.

You must understand how frustrating it has been for a parent here. There was a variety of nurses, all week involved in Johns care, and a lot were not from oncology / haemotology, so had not a clue about haemophilia and bleeds.Quite frustrating when you are trying to remain calm, but insist on the importance of your child being seen asap. The nurses are not to blame, however we do feel frustrated that no haemotologist came to see him, on the night he needed it. My husband is not an emotional type of a guy, ( i think i have seen a tear fall - maybe 2 times in 8 years) but he told me he cried that night, feeling totally helpless for his son.

Finally a surgeon sees the port, clears it,  and eventually at 3.45 pm, on Sunday, the port is accessed and the antibiotic course continues. So this was 24 hours without the iv antibiotic.

Antibiotics continued (and Factor VIII for ITT) until the Wednesday, when he returned home.

I could not believe the state of my sons hand when i finally saw it. He is a total champion, and it will take a while for this to look normal again. Although, in typical John fashion, he is his usual lovely smiley self. An inspiration to us all.


Tuesday, 11 June 2013

The wisdom in veins

As i accessed Austin this morning, this cold morning, missed the first attempt.. grrr i thought to myself, i have so much to get done before we leave to get the kids to school on time.

Second go, was great, done and dusted, the iv med of kogentate went through beautifully, and we could get on with the morning, knowing my 7 yr old son Austin was covered for the rest of the day, and could bump himself like the rest of the lads at school, and be fine :) what a blessed relief that is.

On the way to school (driving) i thought about this access.  I thought about how far i have come from the day of Austins diagnosis, many many years ago. How accessing is now a part of our daily life, but how different my life has turned out from how i imagined. If after giving birth, holding that beautiful little boy in my arms, someone would have told me that i would need to access his veins on a daily basis for him to have a 'normal' life in school and play, i would have thought  - "there is just no way i can handle that". 
And yet,  here i am. And i am stronger through it.

I started thinking about how important our veins are, they are a life source, carrying what is needed for life around every part of our body, with the help of the heart... Wonderfully made. 
I thought about if we missed the vein, it is no use trying to push through the meds, as that would only damage the tissues surrounding. And the medication simply won't get to where it is needed to heal, to protect. 

How often in our walk do we try to push through what we believe in, our truth on others, without first making sure we are connected in a way it will get to their heart? because today it was like 'pooof' - that makes so much sense, if we are not connected to the blood source, we only cause harm.

The past few months have been a bit stormy, with John (our 2 yr old) developing an inhibitor, having port surgery in Auckland (2 and half hours away from home) then having a reaction to the stitches and needing to go back to Auckland just 3 weeks after the surgery for iv antibiotics and a close watch on the port to determine whether it needed to be removed. It didn't - Praise God!

Still, having our very precious family split has opened my eyes to a few things. I stayed home (being 9 months pregnant i could not have kept up with John on the ward) with our 3 other children, whilst Andy went to Auckland with John. This was one of the hardest things for me, i felt so torn between caring for my little boy, and being there and maintaining 'normal' for the other children.
Anyway what did i learn?

Firstly how lonely it can get in the evenings without my best bud Andy (husband) to chat and laugh and solve the worlds problems with.

 It opened my eyes to single parenting, i take my hat off to you women (and men) who do this as their 'normal' . You must develop a certain strength within i imagine. It opened my eyes a little to how it could be for my friends who are not yet married, and i want you beautiful women to know that our door is always open, just rock on over, no invite needed. You lovely ladies are family to us. 

I have also been witness to a beautiful kindness in our friends, thank you for dinner. thank you for baking. thank you for company, thank you for passing the tissues. Thank you for praying with me. Thank you for standing in faith with us. Thank you. 

 Here are a couple of pictures of my Eden (red top) and Austin (Red top) running cross country this week at school. It was quite wet, and yet they ran their race.
People, it doesn't matter if you come first or last, but run your race, finish your race, and finish well. Even when it is raining so much you can barely see... keep going, "this too shall pass"