Here is another diagnosis story for you all.
I met Helen MacFarlane on Facebook little more than a week ago through Carly Mara. She has happily shared her own family’s diagnosis story as another guest blogger. Again, we are going to break it up in parts. Here is part one…
I hope you enjoy this powerful story as much as I have!
On every shooting star I use to wish for a child. And when I had my first-born, Christian……I felt that I only wanted one as I couldn’t possibly have enough love to love another….
And then as I reached my late 30’s, we decided that maybe we had room for one more. We both entered childhood with trepidation, both of us having incredible dysfunction of an abusive nature as children and not wanting to relive the pain of that again, by having our own. Pleasure and pain…….
Falling pregnant with the first child was slow, falling pregnant with my second was just as slow with a painful miscarriage in between. Again I wished on my stars that I would have a child, a little girl, a doll to dress up….I prayed and I wished and suddenly, amidst the familiar biliousness, I was holding up a stick with pee on it, exploding the words…”Im pregnant!!!!” to a surprised husband and a pleased, but slightly embarrassed neighbour.
My pregnancy this time was strange. Can I call it that?…..I tended to spend long periods of time in my pyjamas, I sulked and I was covered head to toe in a very nasty and raised, lumpy rash. I have never seen anything like it…it was angry and weepy and itched so bad, despite my attempts at an “organic” pregnancy, I was medicated to prevent scratching myself to death and bleeding in my sleep.
We decided with this pregnancy that we would also find out the sex of our child and also name the child early, so that “jelly bean” would have an identity. We soon discovered that we were having a girl and we decided to call her Asha Rose. Asha – because I love anything Indian and her name means “hope” in Sanskrit and “Rose” for my obsession with roses…little did we know how symbolic her name was to be…
My labour was intense and very quick. I discovered during the 1/2 hour drive through a very dark country road why the bar above your head in a 4WD is called a “Jesus Bar” I also learnt that just because you walk in reverse into a labour room, doesn’t mean you automatically get an epidural!!!
So….there I was….delivering a baby…drug free….with a husband who clearly stated earlier in the pregnancy…and I quote…”I do not want to go down south”…and I don’t mean, on holiday……we were already living “down South”!!!!
I recall afterwards feeling very empowered. I was crying, as you do, after the labour..lamenting to the midwife…that I had been known as “stupid” for so long, by my stepfather…and I couldn’t believe that I did THIS amazing thing and that no body could take that away from me…I cried because I did something right and I was very proud, of myself….my reward was Asha.
I recall as well sitting upwards, cross-legged on the hospital bed, with Asha on my lap and I was admiring how amazing she looked, that this baby had been gifted to us. I kissed her face a million times, almost to reassure myself that I wasnt having a dream and it was then that I noticed she tasted salty. I looked out to the window across at the beautiful rose garden and admired the roses…..and didnt give that a second thought. I was amazed that she was sweaty and it was 2 degrees outside!!.
When I handed her over to the Nurses for the Guthrie test, I didn’t give this a second thought either. I had the air of confidence of a second time Mum. “Just dont drop her on her head”I probably thought to myself as I was grateful for the cup of tea and Scotch finger biscuit left by the Orderly.
She came home wrapped in a beautiful purple wrap. She was given the appropriate attention that a newborn expects, food, warmth, shelter and bundles of love. I was casual and confident this time. I breastfed her whilst I checked the mail, watered the plants, answering the phone….I was marvelling at how easy she was…and I remember bragging to someone that this baby being second WAS easy….but I was very wary…..this was too perfect, something doesn’t feel right. I even voiced my concerns to a close girlfriend. She reassured me that I was worrying with no concern and to enjoy this special time. I continued on, with this gut feeling.
Then Asha developed a wheeze that wouldn’t go away and would scream at 2pm every afternoon and lift her legs to her chest. After she filled her nappy, the pain seemed to subside. I did mention to my clinic nurse who made notes in the “yellow book” and then she talked about colic and wind pain. The wheeze? Perhaps a cold?
Then we got the phone call. Asha was 5 weeks old. Our Doctor in Bridgetown rang us at home and I answered. He was using words like ..disease….no cure….Cystic Fibrosis…PMH….team of specialists….bed waiting……physiotherapy….normal lives….management. And then, at that exact moment….I actually felt my heart break……I felt “let go” by God and I felt like I was floating…in a bad dream. I was crying…..uncontrollably…..wet…..heaving…cannot breathe….oh my God…….Why?…wanting to vomit…..wanting to scream…needing…my Mum….vomit…..no breath….And..Im doing this, in front of my 4-year-old and my husband. Very very private feelings and emotions…..in public view. Once I had composed myself and comforted my husband, we silently went through the motions of heading up to Perth the next day. My son, Christian came over to me as I had my head buried in my arms, he touched me on the shoulder and sang the Good Night Song that GWN play every night. Fat Cat jumps into a bed and a song is played, poxy one…to the tunes of a keyboard… He sang this song like an angel….and then gently said to me…”I sang this song to you, to cheer you up….I love you”……It was his way of providing me with a safe place to hide…..I hid in his flannelette arms and cried some more….
We drove 5 hours to Perth the very next day and once settled into our room at PMH , the onslaught of specialists attacked our very private lives and opened the guitar case of emotions and plucked at every string. We were sitting on the bed dumbstruck at a new vocabulary with words such as enzymes….physio…percussion….malabsorption. I should have been listening but instead I’m looking at them blankly thinking “Why me? Why us?…….I ate the right foods…..I did good deeds……Ive already suffered at the hands of others……why are we being punished???” I met nurses Liz and Charlotte and cried in front of them…..Dr Wilson and cried solidly in front of him too. My emotions were raw and I felt incredibly vulnerable.
To be continued…