Sunday, March 17, 2013

Why I don't like St Patrick's Day

Anyone want to take a guess as to why I don't like St Patrick's Day?

It was on this day 7 years ago that I was first diagnosed with Twin-Twin-Transfusion Syndrome - the only reason I remember the date is because it was St Patrick's Day.

The problem is that everything we are going through now feels connected to that TTTS diagnosis. If there were no TTTS there would have been no prematurity.  If no TTTS and prematurity potentially Ashlea would not have a disability - so if not for TTTS I could have had perfectly identical identical twins.

But wait there's more.  If there were no TTTS there would have been no kidney failure, and if no kidney failure there would have been no need for a transplant - and if there were no transplant there would have been no complications for Murray.

The connections go back even further than the TTTS diagnosis though.  If we didn't pursue IVF to have children our chances of having ID twins would have been much lower.  If no ID twins then no TTTS.  If no TTTS then no kidney failure, no transplant and no hypoxic brain injury for Murray.

It's all connected and at many points along the journey we have made choices and those choices all seem to have lead us to where we are today.

We chose to try and have another baby after Emma - which lead to us having ID twins (not that we chose for the embryo to split - that bit definitely wasn't up to us!);

When things went wrong with the pregnancy we chose to resuscitate both our babies rather than let them 'succumb';
We chose to continue with intensive care with Ashlea even when she was very sick; 
We chose to give her a kidney from one of us rather than starting dialysis and waiting on the transplant list.

I don't think any of our choices were bad choices - and chances are I would make the exact same decisions again - but days like today make me stop and think about what my life might be like had I made different choices.

What if we had decided that one child was enough and just had Emma - maybe she would struggle less if it was just her?  I think she'd be pretty lonely though - she loves her sisters;
What if we had not resuscitated Ashlea at birth?  I couldn't imagine my life without her - she is such a delight.  I can't imagine the grief I would have felt if she hadn't survived.  I don't know if having an 'easier' life without any disability in it would be enough to make up for that grief? ;
What if we had decided not to do a directed kidney transplant?  Ashlea would most likely be doing peritoneal dialysis every night while we waited for a donor.  I'm glad she's not doing that - her quality of life is so good now I couldn't imagine going back to chronic renal failure - but the transplant lead to Murray's brain injury;
Our choices have definitely lead us on an unexpected journey.

I'm not sure how the interplay between our choices and God's will works on a practical level.  Is it just a consequence of our choices that Ashlea is living with disability?  Or did God ordain before time began that this was to be her life??  He knows the number of her days and the place He has prepared for her in heaven - and also the blessings for me to discover along the way as her mum.  In some ways we are living with the consequences of our decisions but I prefer (need ?) to believe that this is all part of God's great plan.  It might be hard to see God working in the messy details of day to day life but one day when all is laid bare, God's plan for Ashlea's life will be plain for all to see and I am confident that it will show God's goodness and result in praise and glory to Him.

I find it much harder to apply this to Murray's brain injury though - probably because that feels like it is the consequence of other people's decisions rather than our own which somehow seems harder to live with.  If God is indeed in control of all things He must also be in control of this and can somehow use it to His glory - even though from this vantage point in time it seems very hard to see how.


The Trousdell Five said...

I am so sorry you have these feelings, and that they are tied to a memorable day so that you can't help but notice whenever the "anniversary" passes. We didn't use IVF and didn't have TTTS but regardless, the identical twins, prematurity and CP happened. I am not telling you to diminish your feelings, but just to say that even though we had different paths, I still do the same thing and wonder if decisions were made differently if outcomes would still be the same. It's hard not to. Sending you hugs.

ferfischer said...

Oh, I remember our TTTS diagnosis anniversary too - July 3rd, I think. Or maybe it was the 5th. I wonder the "what if" all the time. ALL the time, how our choices led us to where we are today. You're not alone.

Big brother, Little sister. said...

Alison, I am sending you a massive hug and cyber block of chocolate! I thought you must have been scared of the little green man ;)

Julie and Jayden's Adventures said...

Most of those questions are unanswerable this side of heaven. What a relief though to know that God is sovereign in EVERY situation. Can you imagine how debilitating it must be to believe that every choice you make and every decision you come to is solely your responsibility. I would struggle to decide what to eat for breakfast. Leaving the house with all the potential choices and outcomes would be unbearable.
What a comfort to KNOW that despite our choices and decisions God still exercises His sovereignty in every situation.
This little comment on the life of Joseph is worth reading.

Melissa said...

It is a challenging journey you are on Alison. You can only make decisions that are right at the time and that's what you have had to do more then once. You made all of the right decisions- I can't imagine that any of the alternatives could have even been considered. It's simply not fair and I really wish for happier outcomes for you and your family.

Heda said...

Pretty good reasons for not liking St Patrick's Day. But to me it is clear that you made the best and well considered choices possible with the information and all the professional advice available to you at the time. And like you said, what would you change? What could you change? Things are easy in hindsight but life isn't lived from the future to the past. You and Murray are intelligent, caring people who want only the best for your family. Sometimes things happen and they can happen to anybody. Sincere apologies if this sounds like I am preaching because you know that I am in a position to know I absolutely nothing! Take care.

Missy said...

What a thought provoking and amazing post you have written.
It's hard not to look back at your choices and see how they set the wheels in motion for the journey and life you are now living. Like you said none of them were "bad choices" at all, they were choices that were right at the time and it just became how it is.
Big hugs to you all.
You are an amazing woman, mother, wife and friend x x x