Some dreams are worth holding on to.....
The long road to a beautiful blessing
For so long Piper was known amongst her many doctors as the little complex girl with so much going on, the little girl they'd rather
keep comfortable than make uncomfortable with surgeries, we felt deflated and defeated with each hospital visit for we thought surely if the seizures would just go away, surely piper would then go ahead in leaps and bounds, I guess that was our wake up, our
realization came with the explanation of the syndrome (what ever that may be), that itself is what's taking piper away, not the seizures, the syndrome is what causes Piper to deteriorate
Most children like piper will not see their tenth birthday
I hear most! I understand I'm in a complete state of denial and I don't care, if I don't believe in my little girl then who will, we also now understand Piper's epilepsy is merely a symptom due to an underlying cause. A hidden disease which no one can find
is trying to take our baby away. What we don't understand is how the world could be so incredibly cruel
We have the best in the business, their words at times may come across a little harsh, our reaction and response is mostly driven by fear,
we know our doctors are doing all that they can, we know piper is a very complex little puzzle.
The next words to leave us numb come with the suggestion that my husband and I may perhaps like to consider having another child, to ensure
our eldest child a sibling to grow up with, the risk of SUDEP (sudden unexpected death in epilepsy) much higher in a child like piper, We try to process what is being said... I could not imagine how I would offer this type of advice to a parent should
the shoe be on the other foot… It was suggested so gently yet I could not help feel overwhelmed with grief, a little anger, guarded I guess, did they really expect me to replace one child with another. My husband and I walked out of this appointment
silently not daring to look at the expression of the other, perhaps because we'd be overcome with emotion, perhaps because we were each processing the conversation in our own way.
Why does everyone think she's likely to die! Why is everyone just
giving up! Of course this being far from the case, yet emotions so raw that day could no longer see the sense in any conversation.
As for another child we had resigned to the fact that decision had been stolen from us, as much as
we would love for another.
I felt frustrated, how can they tell me that! I would not change my little girl for the world, I love every little piece of our precious miracle, however I could not knowingly allow another human being to endure the
poking, prodding, pain, testing and tears that piper has had to.
As time went by we were able to fully appreciate the conversations brought to us, yet we were also able to witness a little girl proving her medical world wrong, defying odds, gaining
small yet great milestones along the way, as we relished in each moment with our beautiful girls we continued to dance with the idea of another child
Two years later we discuss our concerns with a genetic counsellor he explains our situation,
Pipers DNA has been sent across the world studied and tested for countless conditions, to this day countless common and rare conditions have been eliminated.
In addition to this Michael, Piper and I underwent a trio of genome testing, a process
of elimination comparing our genes against each other to assist in the complex puzzle that is our little girl.
Our geneticist explains although the aim of Pipers years of testing is to establish diagnosis some comfort may be found knowing the alteration
is not from mum or dad.
the fact that we are still to discover this rare condition tells us the condition is likely de novo meaning an alteration in pipers individual make up, so the comfort lies in knowing future pregnancies are quite safe, our
chances we are told are that of any other couple starting out, we are thankful, shocked and excited by what this news could bring
I feel elated for a decision that felt stolen from us is ours again, the possibility is there should we decide to
complete our little family with the third child we'd always longed for.
we feel an overwhelming relief a deep appreciation and then realize there's nothing left except to make the decision, the decision to begin the next beautiful chapter.
We are delighted to announce our family of four, will soon become a family of five, including a gorgeous, strong little girl who continues to amaze us all, an incredible, caring beautiful big sister and a little blessing.
Another precious
child to cherish and love.
Which Willow just can not stop thanking us for 😊❤️ We simply can not wait to see Piper respond, develop and grow along side her new little sibling 💙💖