Wednesday, 21 September 2016

Dancing Stars

Every night I look up at the night sky
I look out for the stars
Some nights there are a few
And other nights there are so many

I see them twinkling in the darkness
Some are brighter than others
Sometimes they shoot across the night sky
That's when wishes are made

Belonging to the swan family
United by our unique children
We see more than our fair share
Of little ones becoming stars too soon

Due to the closeness of us all
Some we meet and some we dont
We feel each one so deeply
We grieve together

Three new stars now shine
In the night sky
Joining all the other stars
Twinkling through the night

The stars will dance forever
Alongside the music they all loved
A band of swan stars
Who will remain in our hearts forever..

Sunday, 31 July 2016

A New Addition...

As you have read on this previous post "Big Brother" we were due to have a new addition to the family .....

On the 14th June 2016 Faith made her entrance into the world after what proved to be a very difficult , most painful labour and birth which resulted in me needing a LOT OF stitches! But despite all this she came out pink and crying...so different from my other children. When she was weighed the midwife looked very surprised and announced she was a hefty 10lb oz!  I remember asking her "are you sure?!" "Are the scales right?!" We had to be closely monitored because I had GBS and needed IV antibiotics to prevent Faith for becoming seriously ill. Apart from a low temperature and reluctance to feed she was deemed healthy and after much persuasion from me I convinced them to discharge us that night back to the comforts of our home!

While we were on the ward Faith underwent checks and found to have loose hips so referral to physio was made for a few wks time and then she had her new born screening....they said she had failed but as it had only been 6 hrs since her birth they said it was normal for them to fail and she would just be retested in a few wks time so we thought nothing of it and went home to enjoy every moment of being a family of 6. When Roo first saw her he was very wary and wouldn't come near her but gradually over the coming weeks he started to accept her although he does tend to ignore her majority of time only checking on her when she cries or needs a nappy change... the older two completely adore having a sister and fight over who turn it is to hold her!

Physio assessment at 4wks showed that her hips had rectified themselves and would not need treatment which was a relief...the same week we also had her repeated new born screening... they applied the wires and we waited while they did the testing... when the audiologist sat down I was fully expecting her to say all is fine and we would go home but it was not to be...she said the test had showed a significant hearing loss...as soon as she said those words it was as if time stopped, I could feel the tears in my eyes, sensing I needed a few mins she went out of the room and i just burst into tears...poor hubby didn't know how to react to my reaction, he had suspected Faith could have issues. Also it was only 4 wks since the birth so I was still very hormonal and cried at the slightest thing but being told that Faith was deaf I will admit that I was devestated. We had prepared ourselves for the possibility of Faith having the same as Roo as had to meet Roo genetics etc during the pregnancy but this was unexpected as our 3 boys are hearing so never ever thought she would have issues with her hearing.

Telling the older two was hard....Lucas has just accepted it but Leo was quite sad, a bit emotional, he had struggled with accepting Roo's issues and really wanted his sister to be like him and Lucas. But after explaining what was going to happen next and he knows what to expect as we are deaf ourselves so he has already experienced and once he got over the shock he has been fine since.

I found my reaction quite surprising to be honest... I remember when we first started the fertility treatment to start a family we were asked how we would feel if our child was born deaf and i remember at the time saying it didn't matter but as it was we went on to have 3 hearing children. I had expected the same for Faith so to be told she was deaf I got all upset and thought it was the end of the world but the more I think about it after speaking to other mums who have had hearing and deaf children they have felt the same as me and its not that we are upset that our kids are deaf , its being upset because at that instant the future you imagined for them was now going to be totally different. Myself and my husband know first hand how hard it was growing up in a hearing world, attending hearing schools and struggling to follow everything, the regular appointments , assessments, meetings, seeing parents fight endlessly to ensure we got the support we needed , to get the right hearing aids etc. This wasn't what I wanted for Faith. I already have regular appointments and meetings for Roo to ensure he continues to get the support he needs and to have to do it all with Faith was overwhelming.

We had another appointment last week for more testing this time to work out her levels of deafness and its come back borderline profoundly deaf  ( there are 5 levels - mild, moderate, severe, profound and total loss) . This means she needs strong hearing aids. We have been told that if they don't work we may need to consider cochlear implants to give her a chance to hear but we need to trail the hearing aids first to see how she reacts/copes. We have to see a paeditrician this week to discuss everything and get mould impressions made, aids ordered etc. I'm now accepting her deafness ...it's a new journey for us all but luckily there seems to be a lot of support out there as we have been referred to teacher of the deaf in our local area, speech therapy , NDCS and also I have the support of family and friends...

A new journey begins for us all alongside Roo's own journey...hence why I've changed the name of this blog as I will write about Faith's journey too. ..