Do you have the courage to ask the hard questions regarding your child?
I like to think I do. Usually I'm all about the questions. I like to have as much information as possible - it helps me feel in control. I have become quite informed about Ashlea's medical conditions. I know what she can and can't do, and roughly what she is expected to be able to do (physically anyway). I know a lot about kidneys and kidney transplants, cerebral palsy, botox, vision impairment, diabetes insipidus...the list goes on.
But I realised today that I have never asked any of her doctors the hardest question of all.
What is Ashlea's estimated life expectancy?
I was actually quite surprised to realise I hadn't asked any of her doctors that question. Especially considering that ever since her early arrival and dramatic NICU journey my underlying fear has been:
Will she die?
Whenever she is sick, whenever she is in hospital, whenever there is a setback my mind immediately jumps to:
Will she die from this?
I am sure other mums who have had critically ill children can relate to this fear. Some of the people who read this blog have children who are still very sick, and there are even some who are being managed by a palliative care team. I am terrified that that is where we will end up again. Back in ICU, on full life support, being forced to think about "what is in Ashlea's best interests" - translation "do you want to continue with treatment".
[Please tell me I'm not the only tramatised parent who thinks like this]
I don't think you have to be a genius to work out that maybe the reason I haven't asked the question up until now is because I have been terrified about what the answer might be.
I am ready to ask the question now. I am pretty sure Ashlea does not have the same life expectancy as a 'regular' person, but I am pretty confident that it would be measured in decades rather than years - which sounds pretty good to me. Much more than what we expected back when her survival was an hour by hour achievement in the nursery. So I am going to ask the doctors the next time we see them - not that I even really expect they will be able to give an answer. None of us has a crystal ball, but I think it would be helpful to hear from the doctors how long they think she could live for - hopefully it will help me to set aside some of the fear that has been controlling me for the last 4 years.
Am I the only one who worries about stuff like this? Have any of you had similar discussions with your children's doctors? Or am I just going crazy??