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Feeling Ostomistic
Sunday, March 05 2017

It is my birthday in 5 days and I am struggling with it, this is the first birthday in 5 years I have wanted to celebrate it. I am having a birthday of my dreams with items on my bucket list e.g enjoy a cocktail again, have a high tea for my birthday, do a flower crown workshop. It was meant to be a surprise vow renewal, but Russ shut that idea down quick smart.... he still claims to hope I will somehow miraculously make it to our 10 year in 2020.

I know it sounds weird that this is the first birthday in 5 years that I have wanted to celebrate, even though that has its own rollercoaster of emotions to accompany it.

This birthday is my 26th birthday but it is also very, very likely to be my last.

For the latter reason, I tried to put aside my issues and feelings to try and have the best birthday I possibly could not only for myself as I feel I need to be shown I am loved and that I matter lately (that is a whole story for another time) but I also knew that THIS was important for my family and friends.

I was told last month that "I don't understand what the issue is with your birthday, you are the only one feeling this way".

It kind of made me feel a little angry that my feelings weren't valid and that I should just suck it up, but this isn't that easy.

You see my birthday was always something I shared with my dad and we would always do a combined birthday, my birthday was the 10th and his the 11th. It was always precious moments I shared with him.

Why I find my birthday hard ☟☟☟☟

It was March 10th, 2012 when he actually started dying. He was terminal with cancer, but that day - my birthday - was the day he started his dying process.

It was also my 21st birthday.

I had this whole day planned, spent over $3000 on it and family were travelling all over for the day mostly because it was my birthday but a big part of it was they knew it very well would be the last time they would see my dad. I knew that, they knew that, he knew that.

So that morning I arrived at 7am to my dad's house to be greeted by my nan who said "He doesn't want you to know this, but he probably won't make it through the day". I went in to see my dad and to sit with him. He looked at me and said "you f$cking know don't you?" and he started yelling at me. I knew this was because he was frustrated, he felt like he had lost his independance and the one request he had to everyone was to not ruin my birthday by telling me, he was so selfish that he wanted his daughter to have a great 21st birthday, but he was angry.

I was so upset I jumped back in the car and drove back home to drive back ready for the party. It was a 3-4 hour round trip and I used the excuse I forgot my outfit (which I did). I drove the whole way crying, shaking and at one point pulling over because I was having an anxiety attack and couldn't see. I wasn't alone, I had Russ with me who was talking reason to me.

I had to get all my tears out before I returned to see him again, he got angry if people cried and gave him pity so you had to hold it in or if you felt you couldn't he didn't want you visiting.

So I got back to his place, I was eager to cancel the party because I wanted to stay with him and do something different.... but he wouldn't let me. He didn't want me to miss out on my birthday and he tried his best to get there but sadly he couldn't.

I understood but boy it hurt.

I got to my party and felt so guilty, I felt like I was the worst person in the world and that everyone would be judging me for being there instead of with him. I made an appearance and snuck outside and just cried for ages. My best friend came looking for me, she had a drink in her hand and she told me to take my time. I had a couple of drinks of liquid courage and went back in to face everyone.

I had a few more drinks and started to loosen up, I started to dance and had fun, I was surprised the DJ knew all the songs to play and I was having such a good time. 

Then it hit me, I felt the guilt again and then I started crying all over again.

Midnight came and the venue needed to close and I headed to dad's where I was meant to spend the night but knowing he needed his rest my friend let Russ and I stay there. He was waiting up for me and gave me my present, it was this beautiful silver heart bookmark engraved for my birthday.

He proceeded to tell me that he was texting the DJ all night the songs and he was telling my dad how I was, he knew already that I disappeared early in the night and was pretty upset but I tried my best to have a good night.

Next day was his birthday and we sang happy birthday via webcam as his room was too small with all the hospital equipment to fit over 20 of us. He managed to get out of bed that day and walk around with assistance, and I thought maybe he wasn't dying afterall.

Later that night it was only Russ, my brother, dads partner and I that were there when his breathing slowed right down that I thought it would stop and he was losing consciousness. We called the ambulance and I thought he was going to die. He held my hand and talked to me. He told me he was sorry and that he was proud of me.

When the ambulance officers came they told us to make ourselves familiar with his end of life wishes and to have the plan at hand, knowing when the time comes we weren't to do anything as he was DNR.

The next day I was having severe endometriosis pain and realised I had no pain meds with me and needed to drive home, as Russ didn't drive I had no way of getting back to dads so went home to rest. I got the call to say the doctor had been and they said he might have a day or a few days but definitely need to get everyone to say their goodbyes.

He died overnight, getting the call at 4am and jumped straight in the car and drove down.

He had always said he wanted to make it to at least see his oldest turn 21.

Why I struggled since to want a birthday ☟☟☟☟

But each year since, I would get rather depressed leading up to it. I had a lot of guilt and I felt traumatised from the events around my 21st birthday and that my birthday never felt the same, I felt like I was missing a piece of me. 

So I decided not to celebrate my birthday and would use this time to go away with Russ somewhere that I could just escape everything and everyone, I know it is selfish but I really can't cope with the overwhelm of feelings. But it is also because I just can't cope with this feelings, so I avoid them, I am in denial that I need to. 

Fast forward to this year, after the suggestion of family they felt that I needed to do this for them, so I have been trying a lot to make this a memorable time for them and hopefully myself, but it is hard when everytime I feel a little excited I then feel this massive overwhelm of guilt and I start vomiting. I can't help but hate myself for trying to want a good time when these feelings keep coming back.

I know no one understands why this time of year isn't easy for me, but it is so hard... it is hard to not feel survivors guilt or that I shouldn't be happy so close to his days.

I am trying my best but I am also struggling.

So I am stressed, I have $800 worth of things needing to be paid for before Friday. I applied weeks ago for a special terminal illness grant to be approved as a dying wish and still haven't heard back even though Russ has sent numerous emails. All the vendors demanding their monies and I am so upset that it won't be the perfect day I dreamed of. I have the cake $200, food at the venue $240 or $6/head and the flower crown workshops of $400 ($20/head). I know guests are paying for their own cocktail high tea in lieu of gifts ($35/head) as there was no way I could afford that too.

Didn't help that last week my cake maker pulled out and had to find a new one, which I am loving the cake.

I just worry I won't have enough time to wrangle money together if they don't let me know ASAP an outcome, I need to have time to either find things to sell or convince Russ to use one of the credit cards which means also getting the bank's approval as it will affect the outcome of our homeloan review in the coming months.

Besides, Tuesday I have an MRI and that has me rather anxious and worried.... just keep asking them to keep the results until after my birthday...

I just want to try and have one LAST memorable, uneventful, drama free birthday! Is it too much to ask of? BUT wish me luck, please, that the rest of this week goes smoothly!

So if you have heard me talk about why I am struggling leading up to my birthday, this might explain it all! But it is a comfort knowing that I will see him soon, life hasn't been the same since.

I miss dad so much ❤ 

p.s pretty keen for my first drink in 5 years, just hoping it doesn't trigger a pancreatitis attack or interfere too much with my medications... drink of choice is a fruit tingle

Posted by: Talya AT 08:33 am   |  Permalink   |  0 Comments  |  Email
Saturday, March 04 2017

A year ago I was in hospital in Sydney recovering from major surgery, when some 6 weeks later I was being discharged and ready to head home. It was a 8 hour trip home and my shoes went missing, so I only had my black slippers and I had hoped we weren't stopping anywhere.

Turns out we stopped at not one but two RSL clubs for lunch, the first was full so we drove until we got to Karuah RSL club... so it was embarrassing! My uncle that day drove 16 hours to come and get me and bring me home, what a legend!


So embarrassing!

As I was preparing to be discharged I got the phone call to say that my little nephew had been born. His poor mum had such a long labour with him and I was relieved when the news came that both mum and bub were safe and healthy. I arranged to stop in on the way home to see my nephew and meet him for the very first time.


Our first time meeting

I was the first of his many aunts and uncles to meet him and I got a cuddle with him. He was absolutley precious. I felt a special bond with him that day that I could have sworn he smiled at me.

Over the course of the past year, I got to have many more cuddles with him. Each time he smiled at me and each time my heart felt like it was breaking, as I just didn't know how many more hugs I would get or if I would get to see any of his milestones. I cherished every minute I did have with him.

    
The keepsake blanket and teddy [LEFT] | Easter 2016, I was having chemo [RIGHT]

   
First weekend sleeping over at my new house

So when his first birthday was approaching, I was nagging his parents back in December with "have you thought of a theme yet", I was met with "His birthday is still 3 months away yet, we have plenty of time".

But I didn't know if I did.

I worried about missing his birthday or if I suddenly got too ill and was unable to make the day or if I would even be alive for his birthday... it is all very unsure at times.

When you are living with terminal illness, everyday you do wake up is a surprise, so I have been so determined to make sure I am prepared and not leaving anything unfinished.... so for me I needed to feel safe in that the invites were designed and printed and that I had contributed to the day.

So January came around and I was asked to design the invitations and that it was a construction theme. Well, boy did I have fun! I wanted it to be fun yet sophisticated but not too cheesy. I wanted to add a photo of him smiling, his smile and laugh is infectious and it just makes you feel so happy.

I also designed some other wares for the party (various signs and what not).

Being involved in the planning of the birthday and contributing meant a huge deal to me. It is my fear that I will die and be forgotten or that Leo would grow up and not remember me. I cry tears of despair and frustration often, about the fact that I would miss so much of seeing him grow up. It's not just him but also my siblings that I am upset about missing out on things, it is missing out on everything and missing major milestones like weddings, graduations or first child....

So I had hoped that looking back on the day Leo could be told "Your Aunt Talya designed your invitations" and that he would remember from photos that I was a part of that day.


His invitations and food toppers/toothpicks I designed

Don't get me wrong, I'm not setting out to make his first birthday all about me, but just sharing how I feel facing terminal illness and participating in milestones knowing the ones I will miss. Maybe documenting how I feel might help someone else who is facing a similar situation to know they aren't alone in their feelings.

On the day:

We arrived around 10am, I was a little late as my stoma that day decided it was going to misbehave and leak.

I was really impressed with how authentic the setting out of the birthday looked - true to a construction themed birthday.


Authentic construction signs

There were construction signs and barriers, there was a wheelbarrow for the gifts with a sign I made that said "dump your gifts here", there was a table with a sign alerting people to a hard hat for people to sign as a keepsake momento of his first birthday, there was a lovingly made (bu his mum) construction cake which he devoured and loved, and he was even wearing a kids sized fluro work shirt too!

   
LEFT: The wheelbarrow before | RIGHT: The wheelbarrow with presents

 
Brownies with DIG IN toppers I made too

     
He loved the cake! There was cake everywhere!

One of my memories of the day was when Leo stood and danced and I saw for the first time him taking steps. I won't forget how much fun he had with the cake, he even was lucky enough to have 2 cakes (one was a cake smash, a family tradition) and there was cake everywhere.

   
LEFT: The hardhat to sign as a keepsake and the cake with the cake smash cake | RIGHT: The cake close up

His gift:

I struggled for months thinking of a gift for his first birthday, knowing full well that he would get a lot of toys, I felt it needed to be something that was unique and precious.

I decided on getting him a star, it is in his constellation (Pices) and it is meant to be able to be seen from his house. I named the star "Sempiterno Leo" which translates to "Leo Everlasting" in Latin. I wanted his gift to be something he could always feel a connection with me when he saw the star, especially as I love star gazing and astronomy.

Besides, how many 1 year olds can say they have their own star!


Leo, you hold a very special place in my heart

I am trying my best this year to really live  and make the most out of each day I am given as I just don't know if it'll be my last.

Leo, thank you for the wonderful year of smiles and memories. I am so proud to be your Aunt and I know that you have a whole tribe of people here to support you and protect you through life. No matter what throughout your life always know how much you are loved, how important you are to so many people and that you are never alone. Know I love you a lot and will always be looking out for you.

To his parents Max and Tahli, Thank you for really letting me be involved in his life and for helping with his birthday. It truly meant so much to me and helped with the guilt I was feeling for missing out on future milestones in his life. You have raised an incredibly bubbly and gorgeous son and I am proud of how great of parents you are to him. He is the most happiest baby I have ever seen and I am so happy he came into our lives. Never doubt yourselves, you are doing great. 

Posted by: Talya AT 06:30 am   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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