Sunday, 6 November 2011

Hospital Healing Hampers - Guest Post!

Please welcome Jen from HHH :)

Lets start from today and reflect back: You could say our parenting style is an interesting one, as our journey into parenting has been equally unique…Our sixteen year old daughter , Lucy, along with our son Luke 14 and Lilly 12 are having to make some big schooling decisions, basically ‘what do you want to do when you grow up?” Lucy comes to us as parents for advice, but what can we say when as 42 year olds we also don’t know what we want to be when we grow up!! The best advice we can give is to live for the day and do today what makes you fulfilled and happy, and to always respect, include, accept, embrace and enjoy your follow human kind and always think outside the square, being open to others opinions and acknowledge that there is often no right or wrong way to life.
Please explain why we do this you may ask.. ? Paul and I married 17 years ago, Paul being a mad football player , who had the privilege of making it to the top of his sport playing for the Sydney Swans, and I was working in the Insurance Industry plodding along, we built a gorgeous house in Fern Tree a beautiful bush suburb at the foothills of Mt Wellington in Tasmania, things were great.. Within a year we had Miss Lucy, stubborn as a mule and took 48hours of tough labour to finally arrive, but all well. Some 16months later Master Luke popped along, once again all good then 2.5years later Miss Lilly Bella arrived, once again all fit and healthy.  Then we outgrew our house and needed to be a little closer to schools and moved to another mountain suburb Mt Nelson, just a little lower in altitude to Fern Tree..  Some 18months into renovating we feel pregnant with our fourth, this is when our journey took a somewhat interesting bend in the road and by bend I mean a 90degree bend..A very sudden bend….
All was fine until our 18week scan, lots of people suddenly come into the room, then suddenly lots of people leave the room.. Paul and I sitting there in an empty ultrasound room sensing fear that we have never ever experienced, our intuition told us things did not look good. When someone finally did enter the room we were told our daughter had many issues and very sure she had Downs Syndrome.  WHAT, WHY, HOW… so many questions how could this happen, I truly cannot put into words the emotions we had to deal with in that first week of this knowledge, it was gut wrenching and made us question so many values, the meaning of life, and so many other questions.  We chose not to go ahead with any further testing, we wanted to best chance for our daughter and so in the oven she stayed until the time was right for Miss Josie to appear..But as a mother and to this day I still carry me a sense of guilt that maybe I did something wrong, I know the science tells me otherwise, but it is still there. I have learnt to put it away into the back of my mind and heart and focus on her strengths and her amazing ability to make us laugh, I thank her for that every day.
Appear she did , after a rather hasty delivery due to her small size and lack of movement, but she did eventually scream that was the best scream I have ever heard, although some 10 years later the scream still continues and I am over it now…! There is a lot of in-between emotions including the emotion of loss, yes my child is alive, but I still felt a sense of loss, I should be grateful , but yet loss was still there, why did this happen? She will never be able to run? Talk?  We then started the medical head spin journey but would need to put that all into a novel I feel.  Josie’s first main surgery was her open heart surgery, wow that was a big learning curve into the world of medical jargon, it was all such a blur, but we had so much trust in our doctors being so medically naïve at this stage.. This surgery was done at the Royal Children’s Hospital in Melbourne so it was so disruptive for our whole family and once again as a mother so hard to leave three other children behind and focus on just one.. During her stay in intensive care, we witnessed a young baby pass away and this was our turning point, I had never experienced such helplessness and loneliness, we had to find a way to empower ourselves to cope with all this emotion that was happening ,and yet to come.   Human strength and spirit is an incredible thing, that just cannot be explained but we truly believe its power is amazing. In this modern world we live in we often take time to slow down and  it can often to lead to a state of confusion , fear, and greed. This experience of Intenseive Care helped us to understand and acknowledge our reality we know had to face and establish a kind of motto or worldview to help us continue in our new world of hospitals, illness and medical lingo. 
  Josie has since then had over 15 surgeries including two lots of hip surgery to reconstruct her hips, two lots of knee surgeries to rebuild her knees, two eye surgeries, many oral surgeries and many more, plus she has ongoing kidney issues, is incontinent, has mental delays, (but one wicked sense of humour), immune deficiencies, and Austistic behavior patterns (which are very challenging), we recently also had another visit to Melbourne as she has multiple spine issues and will require a spine fusion, that’s the next medical issue to deal with.  Plus we are dealing with the joys of puberty… NOT! Must perhaps also mention that after many possible syndrome diagnosis, Miss Josie grew into Kabuki Syndrome, she is a Kabuki Kiddie..
The bulk of these surgeries have been in Melbourne and we travel to Melbourne around 4-6 times a year depending on the year… This disruption to our other children has been immense, but we have been supported by so many people and its our humour and acceptance of the situation that has made things manageable.

Although I would be lying if I said we cope all the time, because we don’t, there are sometimes something like Home and Away, will make me cry for hours! Over what I don’t know… but it sets me off and away I go… I cant watch animal shows like animal rescue, RSPCA, …Then sometimes the pressure builds up like a pressure cooker and whoever maybe closet will get an earful if they tick me off, I remember one day screaming at a radiologist because he was rude to me, well that was it he got it… I truly cant even remember what I said, but it felt good, then I felt bad… ahhh such a roller coaster ride..  I find now when I feel the pressure cooker developing I go for a long walk and stop to remind myself about stopping to smell the roses, and choose your battles.. people walking past me must think I am one crazy lady, as I talk to myself whilst walking…! We have been profoundly affected by many of the relationships we have come across during these 11 years and the healthy relationships we have clung to as they have a tremendous power to nurture the soul and help heal the wounds.
We have also found ourselves having to become doctors ourselves and research so many medical issues and teach ourselves and also being open to new techniques, this often has resulted in us teaching the medical profession. This have often caused tension within the medical world, but I really need them to learn to respect us and families and that illness has not just about the patient it must involve the wider family unit and the impact it has on them must also be considered.  Not all medical decisions need be based on science and theory, often the inner knowledge of a family and the connection between them can make a decision based on the human intuition..Knowledge can be great but must be respected and used wisely taking a wholistic approach.
We strongly feel some 10 years down the track, that Josie is a wise old soul, who has been given to us to help us to all become stronger as a family and allow our other children to find professions where they can help others to become stronger , happier, healthier people.  She also chose us as her parents as we have been able to give her what she needs and that is humour, acceptance, love, boundries, and the ability to be herself.  We are all unique and should always feel able to be unique, without being judged or questioned..Our daughter has given us the eyes and ability to feel peoples pain, emotions, and joy, and the strength to share in all of those emotions without fear of negativity.  It’s the people in glass houses story, no one should ever through stones….
We didn’t choose to have a child with special needs but boy we are so glad she chose us, our life is so much more interesting for it, hard, both physically, emotionally and financially but also fulfilling, busy, and has given our family the ability to truly empathise and understand so many other people. Our network of friends is so inspiring and amazing and we all draw on each other to support when we are having lows and all share our highs..
Having Miss Josie and living and breathing special needs, I also have the joy of working with children with additional needs and their families supporting them and teaching them techniques of coping during their own early days journey.  Everyday these wonderful children and their families teach me about life and how we are often restrained by expectations.  Hence when my children what shall I be when I grow up, I just feel that it is their journey and what will be will be, but they certainly know that we accept any choice they make (within reason of course) and that they should embrace life with an open mind.  I truly don’t think you ever GROW UP, you just evolve..

Our new business venture Hospital Healing Hampers has been 11 years in the making, but is has been only the last 18months that this concept has been able to be completed, as the timing was right.. We provide beautiful Hampers that have been created to provide a natural healing feel.  Each hamper is hand packed to meet the needs of the receiver , such as a cancer patient, a child, a neighbor etc… Hospital Healing Hampers has had so much support from wonderful Australian suppliers who also make their beautiful products with passion and pride, and free from nasty chemicals. 
Together with such amazing passionate people we have created a tailor made hamper business whilst also providing $1 from each hamper sale to support families across Australia with much needed resources.   Whilst the diagnosis, or surgery or illness may be all different the emotional and physical journey is often the same, a roller coaster.. We just truly want to let you know we support you all, and to work in partnership with you to provide a hamper not only packed with beautiful products but to send a hamper that is packed with so many unseen emotions, but I am sure once the hamper is opened so too are many emotions, joy, sadness, gratefulness, love, appreciation and respect.....

You can find Jen and her HHH at or at the facebook page 

Have you heard of HHH before? Have you been the recipient of one? I have heard nothing but glowing reviews from people who have talked about theirs - Jen, you do a wonderful thing, and thankyou for sharing it with us xxx

If you are still reading please don't forget to actually follow my blog - only days till the hat picking money giving draw (did you see that every dollar will be matched by another donor? awesome right? Where would YOU want it to go?)

No comments:

Post a Comment