Sunday, 6 October 2013

Avas' beautiful birth story.. with (non graphic) pics!

My how the weeks have passed ! Ava is now 11 weeks old, and i have been meaning to get her birth down to share with those who celebrate birth stories!

Late evening on the 12th July i started having what felt like period pain... nothing crazy, and certainly nothing that was in any sort of pattern, i would have a bit of a surge and then wait 9 mins, then the next would be 2 mins later, the next one 7 mins later, all over the place, and not 'painful', just noticeable.

I was 39 weeks.

I called my midwife, who said i didn't sound like i was in labour - i agreed, but said that in fact all my previous midwifes have said the same thing when i called them. My surges were as i mentioned all over the place, and lasting for 30 seconds in length.
Shelley came to our place to check, and found i was 5 - 8 cm  dilated (with the bag of waters still in tact) ... so with MIL Maggie already at our place, my hubby Andy gave my 1000iu of Kogente FS  intravenously, for clotting after the birth, and we headed to the hospital after calling my girlfriends to meet us there.

My neighbor Denise (mother of 6) hopped in our car, as she was a part of my support team, and we excitedly talked about the arrival of my daughter as we drove to the hospital.

On the way there was a police stop, and i would like to say that i have always imagined being stopped whilst in labour - and rather enjoyed saying as we stopped "i'm having a baby !!" - Such fun!
Needless to say, Andy was not breathalyzed, nor was Shelley following behind.

We arrive on the ward and my awesome girls are there already - Simone, Olive, Sara and Tahli (with camera at the ready) it's all a bit of a buzz, i get checked again and i am 8-9 cm dilated, but still in fine form talking and laughing... we decide to walk the halls to get things going as the surges are still random, and lasting for about 30 seconds... my hilarious friend Sara has me doing the chicken dance, whilst Olive thinks up ways we could get the waters to go... none of which we attempt, but there is a lot of humour . There was talk of playing 'handbag roulette'.... ( and, in the pic to the left there,
the sign says no loitering...)

Throughout it all with each surge one of my girls would rub my lower back, i found this so helpful.

We head back to the room after spotting the board game 'scrabble' and have a few turns at that before we decide walking around seemed to bring the surges closer together. Meanwhile i am still fine - talking, and during the surge i go into a squat  holding on to the rails in the hallway that stop the beds making dents in the walls... they are perfect height to drop into and hold my back strait, giving me a purchase to swing my hips and encourage baby down.

In the weeks before the birth i had prayed in to this birth, casting my fear upon my good and gracious God, and trusting completely in Him.
I believe that in natural birth the biggest thing that gets in our way, is fear. It has no place in birth and yet it raises it ugly head throughout pregnancies in birth stories that don't go well, in parents fears, and spouses, not to mention our own fear... Fear is of no use to a birthing mother, what a woman needs to hear, what she needs to believe is that she was made to do this. That her body is strong, That her baby is strong. A woman needs to hear she can do it. Because she CAN do it!!

I had one of my dearest friends make a cd for me of worship songs to encourage me, so through out my labour there was the music that lifted my very soul, the words that spoke to my heart and took me back to my center. The sounds that quietly told me i was not alone in this.

I had also written down scripture, and words to encourage me, my girlfriends sat in the corridor with a page each and spoke them to me, i was so encouraged at one point tears of happiness and of joy, came to my eyes. This birth was a spiritual experience for me. I cannot explain it exactly but i felt 'held' though out.

I was waiting for the pain i had experienced before in my other births, the 'rocky road' as we call it.... but it did not come. I simply did not feel the need to cry out in pain, Quite simply it wasn't all that painful.

By 4.25  am my waters had still not broken... and after bugging my sweet midwife enough times, she broke my waters.

I hopped off the bed, and felt pressure and as i walked toward the door to head to the birthing pool, i had the urge to get down on my knees, on all fours, i knew i would not make it to the bath at that point.I was in the middle of the doorway...

I felt pressure and when i reached between my legs, my daughters head was completely out... i expressed this and a friend lifted my skirt to see her entire little face with my hand cradling her head.

My dear hubby Andy is not a man who likes blood and gore, yet his instant reaction was to catch our baby girl as she entered the world. .... Which she did on the next surge, one push from me, and Miss Ava Elizabeth was here. It was 4.32 am! (On the 13/07/13)

At that point baby Ava was facing everyone else and i had not seen her, i stood up and she was passed between my legs. Ava is perfect. There are no words to describe that moment when you see your child for the first time. I wanted to capture the moment, to bottle it, as time seems to stop in those first moments, their little hands, and tiny toes with tiny finger nails - all perfectly made, beautiful eyes , little button nose and wee rose bud lips - wonderfully made. In those moments i understand psalm 139:14

 "I praise you, for I am fearfully and wonderfully made. Wonderful are your works, my soul knows it very well."

My placenta was tummy massaged out as it took more time than expected, and during which Ava fed. In fact she fed for a good 2 hours ! This was such a lovely memory, my husband curled in behind me, resting, as Ava fed and looked up at me with those baby blues.

Afterwards Shelly my midwife said to us that she had not seen a labour like it, it looked as though it would fizzle out at any point.. but it didn't. I thank and praise God for a joyful easy birth ! I thank God that i am surrounded by women who will stand in faith with me, and a husband who does not stumble in his faith.

What tips would i give to an expectant mum?

#1 - Cast your fear. (this is a must -  to enjoy the experience)
#2 - play music that speaks to your soul
#3 - have the people who encourage you surround you, the ones who have faith in you. Have them massage or put pressure on your lower back during the surges.
#4 - prepare yourself, write down things that encourage you. YOU ARE STRONG. YOUR BABY IS STRONG, you can do this!!!!
#5 - (Cast your fear again if it has returned)
#6 - during the surges squat down, strait back - knees apart and swing those hips girl!!
#7 - in labour - DO NOT LIE ON YOUR BACK!!!!
#8 - walk around as much as you can - stand and deliver as it were!
#9 - stay cheerful... this too shall pass.
#10 - remind yourself you only need to get through this one surge. Do not focus on how long it will be... just ride the wave when it comes.You were made to do this!

I imagine when learning to fish, casting is a bit of an art. I think it is also with casting our fear... takes a bit of practice.... if the fear and anxiety keeps returning, cast it again and again. By trusting your body, remind yourself this is how we as women have always brought forth life from the beginning of time. You are no different. You can do this. You were called for such a time as this.

Love and blessings  x

Caroline .

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" 


Monday, 20 May 2013

What's stealing your joy?

 Life is a funny old thing.

It is easy to become lost in the busyness of it all, that somehow we wake up one day, and the joy that once resided in us, seems lost, and i want to tell you it's not ok. I pray you find a way to get your joy back.

There are so many aspects to happiness, but key in it all is true contentment. Being content NOW, with whatever is going on in our life.
I think we have a warped sense of entitlement when it comes to how life should pan out for us.. and when it isn't going so well, we get down about it.

We have just spent a week in ward 27b in Starship. This is the oncology / haemotology ward for children.

There are teens there trying to cope with the seriousness of a diagnosis of cancer. There are parents trying to hold it together. There are babies, and toddlers hooked up to chemo, and when they are well enough, they wander in to the playroom, drips and all.
What i see there - are seasons of trials for families, at different stages, staring death in the face at times.

But what i see above all else... is hope.

I see the gentle precious love of parents, taking in each moment of joy, laughing when they can, making the very best, of a situation none would wish to be in. Something we have taken on board. There is no such thing as 'make up' time, you need to make the most of the day you are given - today.
Really love the ones you love, and spend time with them doing things together, with little kids it can be hard to do something 'everyone' enjoys.

By everyone - i mean all the children in the family... i found it hard to go to the skate park with my kids when they were little (with all those teenagers on skateboards looking cool) - my husband on the other hand was in his element... but, now i get so much joy hanging out with them, watching them scoot around, and when i am not pregnant, i even scoot myself!
My husband would never have thought himself as someone who could paint cool designs on his daughters nails, nor do i think he would have found that 'fun' - and yet the look on his face when he sees his little girls eyes light up is priceless.

Joy is found not only in the things we know we enjoy, but in sacrificing our pride, and stepping outside our 'comfort zone' (in the little things) for the joy of someone else.

Some 'little' things we find joy in and do a lot:

* sucking the kids hair in to the vaccum cleaner to make cool 'dos' (such fun!)
* build lego houses
* visit skate park/ petting zoo/ beach/ basin or playground
* go to a cafe/ restaurant as a family
* always eat dinner together at the table
*dress the kids up in matching outfits (ok maybe this is just my thing) and get nice family photos - or awful ones    that we laugh about later on!
* bake
* Go carting down our own little 'home made' go cart track
* face painting (and prego belly painting at the moment)
* toasting marshmallows on the patio heater
* the neighbours kiddies come over and they all dress up and do a show that they make up among themselves.
* dance
*My husband plays the uke and we all sing along to our favorite songs

I am sure there are other things too, but without a little bit of effort, and taking the time to just stop, and be with the children, the day would be gone, and our potential moments of joy would be over. It is not always easy, but we have found that with the stress of IV access and now port access, with trips to hospital, and times away, we need to choose to embrace the times of joy, however small they may seem.

Lord, i am thankful for the times of health, and the moments of joy. I am thankful also for the journey we are on, and for the people who walk it with us,  for in it, we too have hope.

Saturday, 18 May 2013

Johns' port, the where's and the why's

We have returned!

 A week away in Auckland Starship hospital where John needed a port insertion.. pics below (not of John) to indicate what i am on about..


That metal thing above,  is a port, it has a tube going off it that is fed into a main vein, so that his medication can be injected by a special port needle (see diag) .

This is needed because he developed inhibitors to the factor VIII replacement factor we were using to prevent bleeding internally, and to stop bleeds when they occurred. Basically meaning his medication was no longer working because his body was building up anti bodies against it.

So for the last few months he has been going without prophylaxis (preventative) treatment, and has been treated on demand (when a bleed occurs internally) with a medicine that only works for 2 hrs in stopping bleeding.

So - from this point onwards he will be having 1000iu of Kogenate FS (the medicine his body is rejecting) every Monday, Wednesday, and Friday. We will need to access the port each time on these days, and we  hope and pray that he does not find this too traumatic.

The idea is that by giving him high (ish) doses of the medicine he is building antibodies against, his body will eventually just give up trying to fight it, and thus, the inhibitor will go away (for good - we hope)

This treatment does mean that he will need to remain on regular doses of Kogenate FS - even after the inhibitor goes, for the rest of his life, to prevent the inhibitor returning.

Our office is now full of medical supplies, so we can do home treatment safely, and lower all chances of infection as much as possible. STERILE, STERILE, STERILE. That's our motto!!

Any way - here is the man himself after port surgery - His attitude to the whole thing astounds us! He is running about as though nothing has happened, eating and drinking normally (as you can see from his shirt!) and other than being a bit tender at port site and on neck (where tubing is put in to vein) he is his usual lovely,  "i do it myself" little man!

 Blessed are we to have him in our lives (just as we are his siblings). We are proud, and we are thankful.
God is good in all things, and we have been feeling so blessed by our friends who cooked dinner for our return, who put fresh orchids in the window, who got in fresh fruit and veges, who also gave us a cake and muffins, and stocked up on milk and bread, plus abundance of delicious teas and coffees, so that when we did arrive home, no rushed shopping needed to be done. And no quick yucky takeaway dinner -  I am greatly thankful and humbled by the hearts of our friends. Hearts of kindness, love, and of Christ.  
We are also thankful for the surgeons, the doctors, the nurses the medicine, the plan. We are thankful to Ronald Mc Donald house where we stayed after Johns surgery with him, without that house, we would have been lost.
Yes, thankful just about cuts it.

Thanks guys!

Wednesday, 24 April 2013

Most amusing photo shoot for all...

My dearest friends will love this... my darling husband laughed his hairy head off, so i thought if it creates a bit of a giggle at the expense of my humiliation - then share i will!!

I had a message sent last week from a friend who works for savvy mag (in the advocate) who was doing an article on Mums - for mothers day up and coming (12th May here in NZ - husbands, children FYI)

Anyhoo, some people had apparently put my name forward to be interviewed, however i am yet to find out who they were. Thank you- whoever it was, i am quite surprised and humbled xxx

The article required 3 mummies, one who was a new mum, one who had a bunch of kids, and one who was 'interesting' (i take that as not your norm) - so after the message - i am left wondering whether i am the mum with loads of kids - or the crazy one... however a friend kindly pointed out i was most likely to be the latter. Cheers mate.

So they are needing a picture to go with our questionnaire, and i am informed someone will call to make a time... i advised they came with a wide lens camera.

 Well today was the day!!

2.45pm we agreed to meet at my house.

* Matching outfit for the lads - check.
* Hair brushed, faces washed - check.
* Unrealistic expectation of my 4 children sitting nicely for photos - check.

I guess i had imagined a quick sit down clickity click photo shoot  - (please God let all of them smile and look at the camera (with both eyes open)

No such luck.

The very lovely photographer (who has 3 kids of his own fortunately) said the couch would be fine.

So the kids sit down, nicley - even in age order -  sweet!! But then i need to sit down too.. it all went a bit hairy from there, you see my dear children all wanted to be on my knee for the picture, "heck, if not the knee then the shoulder will do mum"

After a moment or 10, there was order, "ahh" i think, "please just take the picture "
It was at this point that Austin thought a good pose for him to add would be putting his arm over Cormacs head (who was sitting next to me) and resting his hand within my hair and across my forehead. (not so much) Eden thought making a "peace out" sign would look great. no convincing her out of it. Each time we got settled back- her little hand would sneak up to show the world peace.

We then go outside in search of a bench seat to have a photo on,  and the photographer points (with Austins help) to the old wooden rusted as one we bought from the warehouse about 5 years ago. My mind flashes to thoughts of when the last time this had been used by one person, let alone a heavily pregnant one with 4 kids hanging of her.... The thought is quickly followed by words of my father in law who kept its twin when we moved... something about it falling apart and him just using the slats to make a new one...

Oh well the kids are on it, and are told to budge up for momma bear.

We are on the bench seat all is well, the kids are smiling, and i relax.....

Bad move. Cormac and John simultaneously jump my way, and with a child on each knee, and one either side.. the bench seat collapses.

No i am not making this up. I felt like 'Miranda' with kids.
"the bench broke"  i manage to mumble  through my embarrassment.

The photographer (Lord bless that man!)  was so sweet about it, and we all sat on the other bench seats, by which time my darlings were totally over the whole thing. Me - mortified and red faced, Cormac frowning about being made to sit (again) - So he pushed John - Eden's peacing out, Austin's looking bored, and then - John wandered off in search of a train. Some persuasion that may or may not have involved lollies, and another photo was taken.

I do hope i will look back when i am old(er) and remember the truths of motherhood. I am not perfect, nor are my children, and looking on today's events from this end has made me laugh ! ....I hope you can have a good laugh too.

So when you see the mothers day edition and think to yourself "that's a shocker of a photo" please bear in mind the agony i went through for your enjoyment.

Caroline x

Monday, 15 April 2013

"In my house"

 A bleedin' poem...

In my house lives tourniquets, used every single day,

In my house lives needles, used to allay.

In my house lives ice packs, for swollen joints and bumps from play,

In my house lives the children i am thankful for each day.

My house hears laughter, giggles and screams,

My house sees frustrated moments clear,

My house sees healing, love and peace,

My house sees bleeding joints cease.

My house sees tears fall from mothers eyes,

and counts small miracles as faith doth rise.

My house is a home to a family,

and sees the things you do not see.

Thursday, 21 March 2013

Why have more children ?

We are not a typical, conventional family, but i would not change it for the world! We are probably not what people imagine as a 'perfect' family - but there is no such thing. 'Perfectly imperfect' is what we are, just like you.

Big families get a bit of a rap these days - its just not the 'done' thing, and blow me down, a big family with kids with special needs? why would we even bother? - here's why ....

Our first born (Austin) was diagnosed with severe haemophilia A at about 7 months old, and we knew we wanted to extend our brood past one child.

Part of our plan to have a large family stems from the fact that i do not have much family close to me, nor does my husband, and when i look at other families, where there are aunties,  uncles and cousins around, i see so much support. This is not to say that i do not have wonderful friends, who i am greatly thankful for, because i am blessed. But i want my own children to support each other when they are raising children, through to when they are in their old age. Other people that will care, and advocate for them, when we cannot.  That if any of them do not marry, or have children of their own, that there will be a network of family around them. i want for them to always have someone close,  to call.  Surely there is nothing worse in this world than loneliness or feeling unloved.

We did not jump into having more children without looking at all our options, and in this country, we had the choice of going for PGD. (pre implantation genetic diagnosis) We would have been, at that point, the first to go down that track in NZ, and as they did not have a 'formula' per se, our option was to create embryos, which could then be tested for haemophilia, but just to be sure, they would 'discard' all the male ones.
Up until this point, the options previously available were to test baby up to 20 weeks gestation in the womb, and it was, and still is, legal to terminate that pregnancy in New Zealand if haemophilia is present.  Personally i have huge moral and ethical concerns about that, but that is my own personal view point.

So going back to PGD, we again felt that - for us, it did not sit well with our own beliefs, and chose not to go down that path.

So naturally, our daughter Eden came to us, a beautiful wee girl, who lights up the room.

After spending time in Starship with Austin, there had been a small boy (9 months old) in the bed next to him, and as haemotology and oncology are on the same ward, all the other child patients were fighting cancer.This small child had been left alone after stomach surgery, leaving him with a scar that stretched from one side to the other. His parents (and grandparents) were at Ronald mc Donald house, and i only saw them once with him,  in the week we were there, when they came to pick him up. I had witnessed something that confused me  greatly, and it had the effect of wanting to reach out to these children in what ever way we could as a family.
We went through the process of becoming caregivers for 'child youth and family', and within a short while, we had placements of two babies, during this time we were approached about adopting, and within 8 days, our son Cormac came to us. He is our 'little miracle'.

The following year,  John was born, he was diagnosed at birth with haemophilia, like his brother Austin. For us, this is a real blessing. Austin has no one in our city to share the ups and downs of haemophilia with, and so having a brother going through the same things, means he is not alone. There is someone close to him that will always know how he really feels. (and vice versa)

We knew we wanted another child, and we went on to look at international adoption, it was after we had finished the courses needed, that we found we were pregnant ! The ultra sound showed this baby is another wee girl! (due in July) Which is so wonderful in many ways. That is 5 kiddies, not huge, but big,  by today's standards.

So while for others, they could look at the base facts and say ' i would not have any more children' - for us, we would not have it any other way. Our genetics are a part of us,  and we choose to trust the natural process.  We do not take for granted what others may do. We cherish the small things, we appreciate what a true miracle life is, and we intend to make the most of it.
I do not judge others for their choices in life, and where i can, i will support people. We want to teach our kids that whatever the circumstance, you can always do something to make another persons' life better. Which is part of the reason we started running a breakfast club every morning of the school term, over a year ago for our local school. My kids see children who are sent to school without breakfast and without lunch, they see kids come in with swollen lips and black eyes some days - 'from playing' ... and they see there is so much need out there if we stop focusing on our own problems,  i hope to show my children a glimpse of how Christ loves.

Having children with haemophilia has changed us - for the better. Our marriage has solid foundations, openness in all things, and with each joy, and each hurdle life has, we get closer. I am blessed to have the wonderful relationship i have with my husband, and i am thankful in many ways to haemophilia, as it has brought us down a path we at first did not want to be on, but has brought out strengths in both my husband and myself, that we would never have known otherwise. So i can trust that with the new diagnosis of an inhibitor for John, it will all work out for good. Certainly we hold on to hope for a cure, but we will also insist on

The cord of 3 strands is not easily broken:
"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."
This passage from Ecclesiastes 4:12 illustrates the importance of Christian companionship. Two Christians that are bound together in Christ are stronger than the individuals themselves.

This is so true for us, and as a random bit of info  - the healthy umbilical cord that a baby is connected to its mother, also has 3 'strands', i find that really significant, but you may not :)

Friday, 22 February 2013

Sharing is caring!!

People living with chronic illnesses and diseases are holding on to hope - for a cure.

That may not sound like news to you, but it feels like some days i want to scream it from the roof tops.

How will a cure be found? by enough people caring enough to RAISE AWARENESS, SUPPORT and ADVOCATE for one.

Our family has children with Severe Haemophilia A. They may look like your children, but they endure venous access on a regular basis. The comment i love "oh they get used to it don't they" ......... well actually - have you ever stuck your baby in search of a vein? The closest i imagine you can get to that is a rare hospital visit or vaccination at the GP - which is bad enough for any child.
Do you honestly think a mother or father ever gets used to accessing their own child with a needle? Can you imagine the feeling inside before treatment? praying it all goes well?
Do you think you would ever get used to being accessed with a needle on a daily basis?  Enduring long suffering - with Gods grace,  yes!! but getting used to it? .... It never gets 'nice'.

Chronic diseases are called chronic for a reason - here is the definition:

 chron·ic  (krnk)
1. Of long duration; continuing:
2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases
3. Subject to a habit or pattern of behavior for a long time
They do not simply 'go away' or 'get better'. Certainly we learn to live with the condition, for us we believe all things will work out for good. but that does not mean we should be quiet and just get on with it. I don't often talk about Haemophilia, generally because peoples reactions can be hurtful, they can down play it when in reality they simply lack knowledge, information, or education of the disease.
This is where raising awareness is so important. Lets get the facts strait.
We hope for a cure.
We hope people will care enough NOW to want to spread the word.
We hope people will not turn their backs or look away, but listen,  and out of compassion be moved to RAISE AWARENESS.

My son has been attending his school for coming up 3 years, i was told i would receive in the post a form to update the protocol for Austin.
 So this form arrives.. i should put a photo on here of it... it is laughable. In fact my husband and i did laugh. we are to name a 'trained first aider' (there was a list to choose from) to administer Austins medication. I am sure any one of the people would have no problem accessing a vein on demand ! LOOOOL
 I am not even sure how to respond to this. Part of me laughs, part of me is confused that it is not tailored to haemophlia after him attending the school for nearly 3 years, i would have thought they might have noticed HOW the meds are given. I think i will reply that i do not give consent for anyone to administer his meds....bit of a pointless protocol - me thinks.

 Probably need to do another 'awareness talk', they may have drifted off at the last one!!

It's not all bad though, we arrived at school one day this week - without the tourniquet, (fail) and asked a teacher to help with access by holding Austins arm, in place of the tourniquet ... in hindsight i hope she was not too freaked out - but a tourniquet has one job, and on that morning - she was it. (as a side note though, sometimes when the tourniquet is released, the vein can 'bounce' and the needle slip out, with holding the upper arm on little ones, you can gently release, and it can be quite a lot easier.)

Going back to the point of this bloggitty blog -care for the rare.

A friend of mine has a child with aprexia of speech, and we were talking today, (God-  i am thankful to have a friend with a special needs kiddo) and often within Christian groups there is a tendency to, in a way - ignore a special need. As if in some way by refusing to acknowledge the lack of a physical healing will somehow 'bring about' a physical healing.

It is on the strength and in the grace of Christ that we are strong. For it is in weakness that God shows his strength - through us. Which is interesting because it is in your power that your weakness is also shown.
But we are only human, and it really hurts when - for once,  we stand up and say "hey, look over here, support us, walk in these shoes" - and we are shut down.
It hurts because we see what you don't. We endure what you do not, and we cling to Christ in way you (hopefully) will never know.

We hope for a cure, and we hope you will too. Rare diseases are rare because not many people are affected with them, that is what makes them rare. (just to clarify!) This also means that to raise awareness we need people to stand with us, we need people to stand with us NOW. Who are not affected personally, so that TOGETHER, our voice can be heard.

You can choose to hear us, you can choose to ignore us. But we are here, and without you, and people like you, getting on board, we will remain rare. We will remain unheard in our communities.

My son wanted to raise awareness (not fund raise) in his school, to see his school dressed in red in support and in acceptance, would have been amazing for him. However in a turn of events, a different school, that we run a breakfast club at each morning (run by an atheist principal no less! ) is open to raising awareness instead. The mind boggles, at how that turned out, and yet i am constantly surprised at who shows great kindness in great need, and who does not. It is often the people we least expect. Which does go to show you cannot tell a book by its cover.

28th feb - rare disease day - If we do not talk about haemophilia, we will not raise awareness, which is the first step for a cure. Please talk about it. Please raise awareness, please take that first step.

Our family will be wearing RED (the colour of blood !!) on the day, join us and RAISE AWARENESS - Severe Haemophilia A ain't no joke !!!!!

please share if you care!!!!

(and if you dare)

P.S. - yes Fauna - i know you care xx

a bit of poetry,  at the end there...