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.





4 comments:

  1. Absolutely people need to ask for help - often people can't see what you need unless you ask them for help specifically for what you need - and people are too often very willing and happy to help out! :-)

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  2. I'm the same way, not admitting when I need help. So glad you had the courage to reach out on facebook to get the help you need. I thought that was very cool and resourceful. It just goes to show we will do what needs to be done for our children. Thanks for starting a blog and I will add you to my list.
    Lovee'

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