Wednesday, 20 February 2013

Rare disease day anyone? hmm... i thought as much!

So... are you going to do anything?

rare disease day clip share and spread the word!

It is easy with anything we percieve as 'sad'  (poverty, hardship, loss, lack of family, disabilities) to look the other way, or to quickly glance and thank God it is not us in their shoes. But you know what? some of the most amazing people i know have endured more loss than i think i could cope with.

Our God IS bigger than all we face here on earth, but that is no excuse to simply wish people a quick prayer or a pat on the back, and feel we have done our 'bit'.

We are all capable of making a real difference, and it is time we started caring beyond what affects us personally.

I know when My first born was diagnosed with haemophilia, for a long time i felt so isolated from anyone who understood or really cared. I think looking back our parents were in a shock of their own, and backed off. Our haemophlia centre is a 2 and a half hour drive away, as is the haemophilia foundation of NZ's outreach. So it was months before we met anyone who had any information, and even then there was not a specific place we could go to locally to talk it through.

However, I had the most wonderful Plunket nurse who would visit us, and although she did not have answers, certainly she would sit with me and just listen. She would tell me i was doing a great job, and she would tell me how handsome my rather bruised looking baby was.

When my son was diagnosed it was as though all material things were turned to dust. The world did a flip and we were parents of a 'special' little boy. Back then it really was taking things day by day.

Parents of kids with special needs have different journeys to go on. For us there were a lot of hospital stays, a lot of rushed trips to accident and emergancy, a lot of needles in our little boy, and a lot of nasty looking bruises.

Having to explain the bruises to people in the supermarket, when still getting to grips with the disease itself, was not fun. Pointing out bruises on a haemophiliac is like pointing out the wheelchair on a quadriplegic.
Although, certainly explaining them is better than ignoring disapproving looks from disapproving people.

My two hemo boys are the only haemophiliac children in our city, so awareness is minimal. From the outside, physically -  they look like any other young boys (although they are possibly more handsome - but that is my own bias)
Anyhoo - my point is that besides my husband and i speaking to people on a one on one basis and watching their eyes glaze over as we speak- there is not really a way to raise awareness.
My husband has worked at the same company for nearly 4 years, and the men he works with still don't know what haemophilia means. I would be quite sure that most of our family don't really know either.

It really is only a certain few people who have been close enough to see, and kind enough to support us, that know what it means.
I would like people to know more... goodness -  i would like the Doctors in our  A and E to know more about haemophilia !!!

Haemophilia is manageable, the treatment is given via the veins - it does not last long in the system, so our boys are accessed a lot. Blessed are we - that we can do this from home  (or in the school car park on a rushed morning) and so with treatment our boys can have a 'normal' lifestyle.
 I think because the boys don't really look different, and with the treatment they appear as any other child their age, people assume it's not really an issue. But without treatment our boys would be crippled. In fact, even with treatment, from damage to joints, there are many children living now, who are really suffering from the complications of haemophilia. It is a rare disease, and it can have devastating effects.

There are many, many other rare diseases, and families on the 28th of this month - next Thursday are raising awareness of their own particular rare disease. People are doing this around the world, so please support them. Listen to them, for they so want to be heard.

What are your thoughts? what will you do / would you do -  to raise awareness?

Wednesday, 13 February 2013

it's ok to ask for help

I am as stubborn as a mule at times, and being too proud is a downfall of mine. Although, i am sure i am not alone in this.

I am quite happy to offer help, and really enjoy blessing others... but when it comes to admitting i need others, well...that's another story.

As some of you know, i have 5 children (one still in utero, but making presence known by the day) 2 of whom were diagnosed with severe heamophilia A when just babies. Heamophilia is a genetic disorder, meaning that there is a chance with each pregnancy, that we could have another child born with the diagnosis of heamophilia.

Heamophilia is a bleeding disorder, whereby the liver does not produce enough of a certain part of the blood to produce a clot when needed. and it turns out we need to clot more than you might think. I'm not talking about scrapes of the skin, but rather a bump or a knock on the outside of the body can cause tiny capillaries to break inside of the body. and without fully functioning blood, this can cause a small knock to turn in to a nasty bleed internally. "Which sucks," (words from my 7 yr old son)

As a preventative measure we are BLESSED to have a medicine we can give our boys that will give the blood a 'boost'. unfortunately the medication does only last for a very short time once given, meaning medication is a part of daily life in our household.

The hardest thing for my boys, is that this medication needs to be given in to the vein. (not into tissue like for diabetics) and that is an art in itself - ask any parent of a boy on prophylactic (preventative)  treatment.

It is hard for parents (and i can only speak for myself) treating your babies, as when you first start with treatment (even at the hospital) of course your child will cry. They will look at you with tear brimmed eyes that say "help me mummy" - and you have to hold it together. You will smile and say "it's ok bubba, it will be over soon" (whilst calling out to God from the bottom of your breaking heart,  for his grace) You will sing - when all you feel like doing is screaming. You will access your baby, while wishing there was another way....  Not because you are strong. But because you are their source of comfort, you are their parent.

 What advice do i have for other parents ? Cling to Christ. He is the source of our peace .

I should point out -  it gets easier. In many ways. Austin had a port until he was 3 years, and so the transition to accessing his veins was easier, given he could converse with us. He has always been a very brave and loving child, and has always trusted in us and our ability. (even when our hands were shaking).

John never had a port, and at the age of 1 year and 1 week, he started treatment  each week. And this is what i wanted to really get across... it is ok to ask for help.

Andrew (my husband) and I struggled along accessing John as a baby, we managed, but it was clear to us after a couple of weeks, we needed an extra pair of hands. Just someone to hold John in a cuddle while one of us accessed him (and held his arm) and the other loosened the tourniquet and pushed the meds through.
We tried dropping hints to our parents who live locally, hoping they would offer to help each Sunday morning (treatment day for John) but to no avail. Possibly we were not clear enough.Or possibly it was too much for them.
(which is ok)

Anyhoo.. eventually, i swallowed my pride and used Facebook to invite some chosen friends to be on a roster to help with treatment. Which i felt was a good way to ask, as people could reply or not, without the face to face pressure of having to say yes.
I was blown away when we had 8 friends put their hands up to help us. This meant each of them came out to us once every 2 months, on a Sunday morning.
It has meant that our friends have seen what most others do not see, some times, the struggle,  the joy, the sadness, and the peace that comes with treatment.
It has meant that treatment has been so much easier having that extra pair of kind hands.
I am so grateful to these people, you know who you are.

John has been amazing, this past year, with accessing the vein first go most days - i can give thanks to God and I praise Him - for He is good, and He makes a way, where there seems to be none.

In a nutshell - please don't wait for people to see your struggle, they have their own, but humbly reach out, and in love you shall receive.

Sunday, 3 February 2013

"What's blood got to do, got to do with it?"  (try saying that without singing to the tune of Tina Turners song)

I thought this is a fitting title to my journey though life, as a mother of 4 children, with #5 on the way.

Firstly -my life in Christ, and the peace that comes in knowing Him.
Secondly - adoption, as i have a child born not of my flesh, but of my heart.
Thirdly - haemophilia, just to make life interesting, as two of my sons were diagnosed with severe haemophilia as babies.

My thoughts today are around abortion. Yes,  its not a great topic to start a blog off on, but it stems from a conversation over facebook of late.
I am deeply saddened by our lack of moral and ethical ground here. I am so over hearing about 'womens rights'.

Are we so blinded that we have forgotten how a baby is made?
There are a few crucial steps involved, and i feel our society needs a reminder.
 "Accidents happen"  - really? Were you not aware that by having sexual intercourse you are running the 'risk' of creating life within you?
It's like saying "i was walking in the middle of the road, but i didn't want to be hit by a car"

Actions have consequences. For every action, there is a reaction.
Here's a tip - if you do not want to have a baby right now - do not have sex.

Also - people who are run over have life long injuries. You may get the life back you once had, but there will be scars.
What i am saying here is - keep yourself safe, there's no going back.