Tag Archive | diagnosis

Life gave you lemons? Make lemonade!

Owning a cleaning business means that I get to know my clients fairly well through their possessions. As an avid book reader, I always take an interest in books people are reading for literary inspiration.

Recently, while cleaning a house for someone whose son attended the same Early Intervention Program as my daughter, I came across a book on the coffee table titled “Parenting a child with Sensory Processing Disorder”. Since this is a bit of an issue in my household, I had a quick flick through and enjoyed what I saw. One excerpt caught my attention as it was highly relatable and explained parenting special needs quite well.

In the book, it is titled “Holland Schmolland”…I am going to  loosely quote it, but if you get your hands on the book, you can read the full story.

 

The book that generated this post

The book that generated this post

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy — you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, “This isn’t exactly what I had planned, but it’s not so bad. It’s just different.”

Reading this inspired a topic. The analogy is pretty much smack on perfect for parenting special needs.

While trying to conceive, and/or during pregnancy, you envision your child and how life is going to be. It is going to be textbook perfect, reaching milestones at the right ages, they are going to grow healthily and happily and life is going to be picturesque.

Then all of a sudden you get slammed with (in our case) milestones not being reached, resulting in hours of therapy, or serious health issues that require ongoing maintenance or care.

A personal example that echoes the analogy is my son’s cystic diagnosis. It was earth shattering when we got our diagnosis. I was in shock. I was upset. I was thinking “What on earth did I do to deserve this?” The night of his diagnosis is a bit hazy after the doctor said the words “Yes, he has tested positive for cystic fibrosis.” but I am pretty sure I said those exact words to my mum when she rocked up to the hospital that night.
Almost four years on, I am impressed at how well he has been! I was expecting to constantly be in and out of hospital with his CF. So far, we have only racked up two CF-related hospital admissions since diagnosis (then, also one overnight admission for acute tonsillitis) While CF is very prevalent in our lives, it is easy to forget how much it has impacted your life. I talk about CF all the time (probably too much on some people’s eyes!) so we never forget about it,  but we have had it pretty easy so far!

You can pretty much use this analogy for all things in terms of pregnancy and planning your life. The little munchkins have their own plans and will never follow what you envision.  There is no point running around like a headless chook, it doesn’t change the situation.
Best thing to do is to just roll with it as best you can!

A quote I recently saw on Facebook made me giggle, but is fairly true is: “If life gives you lemons,  make them into a chocolate cake and leave everyone wondering how the F@#K you did it!”

Bella 🙂

MacFarlane family- Part 2!

Welcome to another guest blog post.
You may remember Helen from Part One, which was about her daughter’s diagnosis with cystic fibrosis. Have a look back to remind yourself with the story.

In this post, she touches on feelings and relationships. I can personally relate to most of it.

Hope you enjoy the latest installment of Helen’s story!
Bella 🙂

When our daughter was diagnosed with CF, I felt that I was impacted upon the most…can I say that? Can I be that selfish… I mean…I felt that I owned the disease, I OWN the disease. I am the Mother. I am the keeper and the protector. This was of my own choosing as my daughter didn’t have a voice and a choice, and still doesn’t. And, until she does, all her hurts are my hurts, her successes have become mine….and sadly her failures too…her lungs have become my lungs….

We left that hospital after the diagnosis with incredibly heavy hearts, a head full of information and fists full of literature. We went home to my Mother’s house expecting tea and sympathy, which we got, in moderation. I didn’t expect everyone else to be grieving too. And I soon found that I was consoling everyone else. My Mother, my sisters… all except my husband and my son. Ben dealt with the disappointment as he has dealt with other disappointments in his life. He didn’t say much at all and spent weeks processing the information whilst rubbing my back at the same time.

Grief is a very personal thing…a lonely place….a bleak club with a free membership.You don’t really want to share it with people who haven’t grieved such a loss. How can they possibly understand? And to me, this wasn’t about the death of somebody. This was the death of so many other things….expectations, lungs, pancreas…This was about sitting back and watching someone slowly die of something, and being powerless to do anything about it.

You cannot PASS GO with grief. It’s a rite of passage. You have to swim through it., and you have to stay afloat with a child that needs you to be seriously afloat….not just floating really….SWIMMING….with a team…crossing a channel…but a REALLY BIG CHANNEL!

To add to Helen’s analogy: Friends, family….specialists, are like an extra piece of padding to a life vest…helping you to get across that REALLY BIG CHANNEL

I read somewhere that having a child with CF is like watching someone drown out at sea and you cannot get out there to save them. It was the death of my expectations. The death of the constant cravings of being a normal family despite our dysfunctional past. The death of having the luxury of 2nd child parenting confidence that I was so looking forward to.

We now had to include a lifestyle of medication into a family that never took pills for anything and abhorred chemicals. We had to change our philosophy on diet and turn our back on the concepts that salts and fats are bad for you (they were actually going to save our child!) all without influencing and compromising our first child. (Speaking of which, my heart grieved for Christian and the new kind of sibling rivalry that evolves with having a sick sister…..and the grieving list goes on….)

This grief was to take place in a small country town, miles away from home, amongst strangers and in the spotlight! We were a very private family. We have grown up this way through our own families…protective…insulating. To have ourselves exposed was awkward, embarassing…vulnerable. That was to, and had to, change. We had to let others in: specialists, psychologists, social workers, friends….strangers.

The first few months after diagnosis (“AD”..I call it…there is a definite “before and after” diagnosis on our timeline) was wracked with paranoia and isolation and hysteria. The isolation was devastating. I was too scared to take Asha to Playgroup. I honestly thought it would be at a great cost to her health if I did. And when I did finally go, I still felt isolated because every lady there had incredibly healthy children and I did NOT. I felt that I was running a completely different race to everyone else. That added more salt to the wound and a sense of failure had set in. I had to explain my “story” numerous times to people….people who asked after Asha…my husbands work colleagues, the green grocer…..my friends. The hardest thing was to console my closest friends, those that knew that I had already fought hard, to be me and still had such a battle ahead. To hear them cry and know those tears are for you, and your little girl are the most devastating. I mean…how do you “hold” them when they are on the phone?

I did manage to secure an email address of another mother who also had a child with CF. I began to write to her. She was an expatriate living in Zimbabwe. Although THAT is another long story, her emails are what got me through the early days especially. I longed for her emails and they brought me a huge relief and validation of my own feelings, which were confusing and confronting. She became very close to me and knew exactly what to say. There were no emotional boundaries with Trilby, and I believed, and still to this day believe, that we can cross them with ease with an incredible sense of trust.

I liken my relationship with Trilby to a buddy breathing system that deep-sea divers have. You are in the abyss…..and breathing easily…..knowing that your dive buddy is there, with a regulator…in case you can’t breathe. There were many times in the early days when I couldn’t. No one knew that except Trilby, not even my husband. The beauty of our relationship was that we both grieved together, like a Venn diagram…..on our own but intersecting in the middle…..

Venn diagram of sharing grief

TO BE CONTINUED. Thanks Helen!

🙂

The “MacFarlane” family story- part 1

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!

Bella 🙂

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”!!!!

The beautiful baby, Asha

The beautiful baby, Asha

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…

The “Mara” family’s story- part 1

Some time ago, I put the call out into cyber space, for any parents of children with special needs to share their stories.

It wasn’t only limited to Cystic Fibrosis or Global Development Delay. Anyone who wanted to share their experiences as a way to vent, or hopefully help someone in a similar situation, were (and still are) invited to tell their stories.

The wonderful Carly Mara accepted the challenge 🙂

Her daughter, Ava, not only has CF, but was also born with a cleft lip, and was also dealing with hip dysplasia. While all this was going on, Carly’s father had a stroke.

Her story has touched me. I can relate to so much of it (well, the CF side of it anyway!) I found myself nodding along as she describes her emotions. She has explained them so much better than I could!

Thank you so much, Carly, for sharing your family’s experience (and providing pics)

Follow her story. We will be publishing it in installments.

Bella 🙂

 Here is part one of Carly’s story….

 

Meet baby Ava. Isn't she adorable???

The 14th September 2010 was just like any other day.

We had a 3 week old baby girl who was born with a Cleft Lip and was also in a froggy brace for Hip dysplasia. Her cleft was discovered at my 20-week anatomy scan(another day I will never forget!)

 I was devastated. I just couldn’t believe this had happened to our baby girl’s face! It was hard enough getting her here to begin with, being that she is our IVF miracle I was sure that was the biggest hurdle we were going to have to overcome! So once I got those two little lines, and the confirmed blood test, I thoughtWOW. We did it!”

Little did I know there were three things waiting for us around the corner, the biggest blow coming to us last.

I remember the midwife coming to check on Ava. and also to do the Guthrie Test. It’s funny. you know, cos when I think back, the midwife handed me a pamphlet explaining the Guthrie Test, how it was done and what it screened. I had a really quick look at it and placed it on the table. My mother-in-law said “Have you read through it?” I said “Yeah” quickly, then the midwife said I should sit down and have a read.

Once again, I just flicked through it thinking to myself “Nah it’s all good. We’ve got the cleft lip and the brace (which was fitted at three days old)…there couldn’t possibly be anything else.”  So the whole thing just left my head. Test was done, Ava was looking well and doing everything a newborn should be doing so all was great. I never gave that Guthrie test another thought.

We knew Ava’s Cleft would be repaired at 3-months-old, so we were concentrating mostly on that, trying to prepare ourselves mentally and emotionally. So the morning of the 14th September, I was sitting on my bed, Ava was asleep and my hubby was out in the kitchen. The phone rang, he answered it. I could hear him talking for a while but couldn’t hear what was being said. Didnt really think much of it. Then he hung up walked in and said to me ” That was a lady from Princess Margaret Hospital. She said Ava has tested positive for Cystic Fibrosis”

I just looked up at him and said “What?”

Ava in her brace for hip dysplasia

I was dumbfounded! Mostly cos I wasnt too familair with CF. I knew it existed along with a million other diseases. I knew it wasnt a nice one, cos I remember a conversation with my mum years ago talking about her nursing years. She said that from things she saw she never wanted to have a baby with four particular diseases, one of which was CF.

I asked hubby to tell me the whole conversation, so he repeated what he just told me. I demanded more information, but I think he was stuck too, not knowing exactly what had just happened. But luckily he wrote down a phone number, so I called and got Liz on the phone. She explained that the Guthrie test had come back positive for Cystic Fibrosis. She gave me a rough run down of what it was. I just kept asking her if they were sure, like, really, really sure. Is it possible they’ve made a mistake? Are there any other tests Ava has to do to further confirm it?

Liz told me about the Sweat Test. I think I was on the phone to her for about twenty minutes, going around in circles pretty much, trying to comprehend what was being said, and at the same time flat-out rejecting it. I wanted to scream and cry. I also felt totally numb and angry and confused.

I think about a week or two later we had to go to PMH for CF Education, woah! What a head spin that was! So many people, soo much information. All so scary, confusing and overwhelming. I think it was even harder for me at the time, because the same day as Ava’s diagnosis, my dad had his second stroke, so we were between Sir Charles Gardiner Hospital & PMH for quite some time.

Thank God we were given so much literature, cos there is no way in hell I could have retained much information. Everyone time someone walked into our little room to talk to us about their part in CF treatment, I felt defensive and a little stand-offish, like it was their fault we were there. I felt some kind of resentment towards Liz for calling us that day too. Every time we would get a phone call or appointment letter I would feel angry because I just wanted us to be left alone. I had waited sooo long to finally have my little baby, and I was having to share her with all these people.

Being shown all the physio positions and all the medication Ava would be on was very overwhelming. Where physio was concerned, for a few months, it wasnt at the top our priority list because Ava had to be in the froggy brace for 23 hours a day (it could only come off at bath time). Our physio understood, so that was one less thing taking up space in my head.

 Our first lung function test was a whole lot of drama for nothing. Very stressful the first time around. The sedative didnt do its job. Ava was screaming and crying, which was upsetting me. I hated seeing her have to go through all this stuff. At one point, hubby was holding Ava in one arm and vacuuming the main desk in Respiratory Department, trying to get Ava to sleep (she was a white noise baby for quite a few months. I spent many hours with the blow dryer going or the vacuum putting her to sleep, even at 3am!) But unfortunately this day at PMH it just didn’t work. So after an hour or so, we decided it was time to go home, thank God! Once home, Ava slept soundly -of course!

Our first Bronchoscopy was an experience too!

Fasting a baby is horrible. Being in the waiting room with other parents and their children, waiting to be called in, while your walking the floors with a screaming baby is no fun at all! Plus being a bag of nerves knowing what is going to happen, your mind going over what they might find in those little lungs, it was really starting to do my head in! Then finally we were called in. The walk down the corridor felt so long, cuddling Ava soo tight and giving her the biggest kisses as I hand her to my husband, Chris, so he could be with her when she goes to sleep.

I just felt sooo helpless and guilty, and wishing I could take it all away from her, or that I could go through it all for her. We waited in the Friendship Room. I finally sucked my tears up and it was all over. Into recovery and there she was, my tiny baby, sound asleep. So the tears started again. The results from the bronchoscopy came back fine.Yipeeee!

 One bronc down, Cleft lip repair to go!

To be CONTINUED……Keep an eye out!!!

 

 

***Extra Notes***

 The nurse mentioned in this installment, Liz, will be known by West Australian CF families. To those who don’t know her, she is a clinic nurse on the Princess Margaret Hospital CF team. She is the “guru” CF nurse.

The” Friendship Room” mentioned, will also be known to families who have been at PMH. It is a waiting area for parents to sit in while their children are in surgery. It is run by hospital volunteers who serve tea/coffee, provide plenty of magazines and conversation. They receive the call when your child is out of theatre, and escort you down the passages to where your child is in Recovery.