Tag Archive | emotions

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…

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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.

The Blame Game

A fellow CF mum contacted me recently about an interesting topic that I thought I would write about.

DNA- it's a complex thing

How would you feel if you knew that you were directly responsible for your child’s medical condition? This is something every parents who has a child with a genetic condition will surely think about. A part of the emotional processing is wanting to blame someone. It’s completely normal to feel like someone is at fault.

 

With cystic fibrosis, a patient needs to have the defective gene from both parents.

 

My husband and I had no idea that we were genetic carriers until my son’s diagnosis. I didn’t really give it much thought at first about the fact that a part of me was to blame. My son was extremely sick at diagnosis, so it took my focus away.

 

In all honesty, I have never really blamed myself for my son’s CF.  As far as I am aware, neither has my husband (hard to say, as he is one to keep thoughts like this close to the chest) There was no way of preventing it from happening, and I was accepting that it has happened, we just need to deal with it now.

 

I have other family members who, despite the fact they aren’t going to have more children,  have considered getting themselves tested to see if they are genetic carriers, just so they know where it came from. I honestly feel that if these people were to undergo the testing, it would be giving them fuel to blame themselves, when there is no reason to. What happened, has happened. There is no reason to go around pointing fingers.

 

Easier said than done, but try to strip yourself of the emotional burdens!

At the time of my youngest son’s diagnosis, my older children were starting the process of being diagnosed with Global Development Delay. This is when I started wondering what was wrong with me. I had three children who were having development issues (and I have a history of development issues in my family). While the doctor isn’t considering it, surely there is some sort of hereditary reason for it? One child with problems, it happens. Two children, that’s really unlucky. Three children…there has to be something going on! A lot of these feelings are because of the frustration of not being able to find a diagnosis (there are names for everything these days…cant we find something?) therefore, we can only access a limited amount of resources to aid their development…but that is another subject.

 

I have said these to a lot of other mums who have gone through similar things (such as premature labour, gestational diabetes, children with medical conditions) there is nothing that you could have done. Unfortunately, the odds and percentages sometimes don’t work in your favour. You just need to put aside the guilty feelings and concentrate on what is important…the small humans that create chaos in your life!

 

I hope this makes sense to you readers, and you own opinions/experiences are encouraged.

Bella 🙂

15 movies to make you cry

My husband is away for the next four weeks, so I am busy stockpiling our movie supply to keep me occupied, mostly at night when kids have gone to bed.

I was in the mood for drama today, and watched Life as a House (starring Hayden Christensen and Kevin Kline) and of course, by the end, the eyes were glistening with tears. It had me thinking what other movies had me shedding tears. So here is my list….feel free to add your own.

**Warning, if you havent seen all of these movies, there are some spoilers written**

The Notebook– This movie had me weeping like a baby! I don’t think I have ever cried so much over a movie. It has an absolutely touching ending. I don’t know of anyone who wasnt moved by it!

I gave this movie to my mum for Christmas a few years back. A couple of weeks later, I get a phone call from her, sobbing her eyes out. Once she could talk, I had to laugh when she said “Thank you for the DVD!! It was a beautiful movie!”

Braveheart- Anyone you knows me, knows that I am obsessed with Scotland (though, I’m not really sure why) so it comes as no surprise that this is one of my favourite movies.

No matter how many times I see it, I choke up when Murron is killed and I cry when William is executed.

 

Neverending Story- When Altreyu is begging for his horse to move….my god!! Bawl factor!!

Then you are just about fist-pumping along with Sebastian by the end!

 

 

The Green Mile- I couldn’t believe that this was a Stephen King story. I now have the books and love them. It has a great storyline and the end chokes me up every time! I watched this movie with my grandparents, and I could see my Nanna getting a little emotional too.

Tom Hanks is one of my favourite actors!

 

Armageddon- When she is saying goodbye to her father, or rather, when he was saying goodbye to all of them…..*sob*

 

 

 

The Color Purple- My sister-in-law recommended this movie to me when we were talking about emotional movies years ago. I was heavily pregnant at the time and already having mood swings. The story takes you on a rollercoaster of emotion. Great movie!

 

 

Walk to Remember- the wedding scene…don’t know of many people who have watched this movie who havent been affected.

 

 

 

Pearl Harbour- I saw this at the cinemas with my History class in highschool fo ran assignment (even though the teacher didn’t do his research on the movie before organising the excursion and admitted that it really didn’t have much to do with what we were studying…its was more of a love story) But all you could hear was stifled sobs at the end.

 

Looking for Alibrandi- Again, I saw this at the cinemas and we were studying the book in English class, but you could feel the tension and sadness in the cinema with John Barton’s death/funeral (except for the bit when there is a bird’s-eye view of the coffin and a confused voice pipes up from the dark “What’s that?” causing everyone to giggle!)

 

Forrest Gump- Oh my! There are too many scenes in there that made me bawl to mention them all. It’s one of my husband’s favourite movies.

Again…Tom Hanks!!

 

 

I am Sam- Dakota Fanning is an amazing actress. Who could believe that much talent laid in a seven-year old? Absolutely beautiful storyline!

 

 

My Girl- Childhood death is always an emotional subject. All the actors in this movie did a brilliant job of bringing everyone to tears!

 

 

 

Patch Adams– You don’t see Robin Williams cry very often, but I was sobbing along with him over the death of Carin.

None of these are in particular order, though The Notebook was definitely the strongest emotional state I have ever been in! But I love each and every one of these movies. There are probably many more I can add to the list, but these are the ones that most stick in my mind.

What other movies can you add?

Bella 🙂