Gaining insight from my children

In the final post on Gaining Insight, I’ve decided to post the responses I got from my children.  I have 3, 2 boys and 1 girl aged 6.  She is too young to understand all of this and yet, she played an important part in the last 3 operations I had.  I was 5.5 months pregnant with her at the time and underwent 3 operations over a 3 day period.  You can read all about it here.

My boys have very kindly agreed to be part of this blog segment.

Each of my boys are so different in their personalities. Jamie…so much like his Dad, doesn’t show emotion easily and prefers not to dwell on negative emotions. He prefers to think of me as being “fine” and would rather I not wallow in negativity. He will attempt to see the positive in a situation and eagerly points it out to me. (I suppose it’s his way of trying to make me feel better).

Gabriel on the other hand…this boy takes after my soul in so many ways. Very attentive, kind and displays such loving care especially when I am unwell. There are times when I will be feeling ill and trying to mask it.  I’ll notice him looking at me intently, observing and without prodding, he will inquire about how I’m feeling if there’s anything he can do to help or even just offer to make me a cup of tea. It’s something which comes naturally to him and makes me proud. He definitely speaks my love language in so many ways…

Both my boys were rather young at the time of my diagnosis and when I had my operations. From the responses, I can see that they attempted to answer, especially Gabriel, with their current mentality. I could almost feel him immerse himself in the situation as if it were unfolding at present.

This is what they had to say:

Jamie-Ethan – Age 14 (Age at diagnosis and first OP – 5, Age at OPs 2,3&4 – 7)

1. What is your relationship with me?
   • Son
2. Do you know what condition I have?
   • Hydrochephales
3. What is your understanding of this condition?
   • Something about a fluid in the brain
4. Do you know the signs and symptoms to be aware of when something is wrong?
   • No
5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
   • 7
6. What was your initial reaction when you found out I have this condition?
   • I didn’t know what it was but now I have a better understanding, but still not sure.
7. How did you feel when you heard I needed surgery?
   • I was very young at the time and can’t really give an answer.
8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
   • Not sure
9. Have you noticed any significant changes in my performance?
   • A little
10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not sure
11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • Not sure
12. What frustrates you most about me having this condition?
    • Your memory frustrates me the most…not remembering things.
      
13. Do you have any questions for me?
    • No
14. If you could say one thing to me, what would it be?
    • Try to live your life and enjoy each day. No matter what happens, we’ll deal with it as it comes. If you need another OP and let’s say you don’t make it, then at least you know you fought and gave it your all. I’ll know that too…it won’t be your fault. Just try to enjoy the time you do have and the time we spend together.

How grown up is that?!

Gabriel – Age 12 (Age at diagnosis and first OP – 3, Age at OPs 2,3&4 – 5)

1. What is your relationship with me?
   • You are my mother.
2. Do you know what condition I have?
   • You have Hydrocephulas. 
3. What is your understanding of this condition?
   • I know that sometimes you can’t organize things and you get lots of headaches.
4. Do you know the signs and symptoms to be aware of when something is wrong?
   • Whenever you come home and you don’t look like you feel that well. 
5. On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive (in any way possible) when I’m feeling ill?
   • I’d give myself a 9 because I always ask if there’s any way I can help.
6. What was your initial reaction when you found out I have this condition?
   • I felt really bad for you because then I realized why you had some struggles.
7. How did you feel when you heard I needed surgery?
   • I felt like your hydrocephulas was getting worse and I felt concerned. 
8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
   • I’m not sure. 
9. Have you noticed any significant changes in my performance?
   • I haven’t noticed any changes 
10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • I was worried that you might’ve gotten hurt.
11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • I don’t feel that I’ve changed towards you.
12. What frustrates you most about me having this condition?
    • That it causes you a lot of stress.
13. Do you have any questions for me?
    • No.
14. If you could say one thing to me, what would it be?
    • I wish you didn’t have Hydrocephulas.

The only talk my daughter and I have about my Hydro is when she notices the scar on my tummy or head after I wash my hair or she brushes it. She’s normally curious and just asks “Is that where the doctor cut you?” and, then winces as if in pain and gives me a cuddle.
All she knows is mum’s not feeling well at times and in turn gives me TLC with a lot of kisses and hugs. She’ll say things like, “Mum are you tired? You can have a nap mum you know (matter of factly)” or “You can just relax“…

I feel bad for my children. I’ll be honest and say, it wasn’t all that easy to read what my boys had written. If I had a lump before, then this broke the banks of my tears.

Unlike the previous posts, I had a face-to-face discussion with each of them separately to answer any questions but mostly to clarify anything for them. I started with Gabriel on a Saturday morning when we went for a walk, just the two of us.

I explained how I had developed the condition, how it makes me feel and what happens when I feel unwell. He is a sensitive child so I decided that showing him photos of children with Hydrocephalus (who have not had treatment), would not be a good idea. So… I brought it down to his level and used the character, Megamind as an example. He smiled but immediately understood what I meant when I told him what happens to children with all that excess fluid pushing against the skull.

It was good for me to explain some things to him that didn’t make sense or were unclear because it gave me insight into what he actually knew and understood vs what he didn’t. Going forward, I have no doubt in my mind that he will always have my best interest at heart. His responses showed me that he thinks about this more than I was aware of. My hope through all of it though, is that it doesn’t stress him out too much. I feel a bit guilty about this, especially since I realized that while I thought I was masking so well, that at least one person is fully aware of what’s happening at that time.

Later the same week, I had a chat with Jamie… 

As with Gabriel, I explained the things he too didn’t understand…where it all began, what meningitis is and the effects. He was too young to remember anything from diagnosis to the last 3 OPs, as previously mentioned.

When asked what he thought would be good support from him to me, he asked if he could provide support by helping out around the house and taking care of his siblings when I’m unwell? I said this was perfect and would certainly help. I further explained the importance of when I ask them to be quiet and when I need to concentrate, as these things affect me too at times especially when I feel unwell.

I explained why I’m always tired and need to rest. I told him about my sleeping episodes, my fears and asked him to be the backup when his Dad is not around. Check up on me when I’m not well, be alert and not take it for granted that “Oh, mum’s just sleeping“. I realize this might be asking a lot and placing a big responsibility on his shoulders. However, I’ve taken into account his personality and weighed up the odds of not telling at least one of my boys, about the possibility of going into a coma, in the absence of their Dad. He is very mature for his age and has proven to me, that I can depend on him when I need to. His brother on the other hand… let’s just say, his sensitive soul guides me on this one.

Obviously, my memory, or lack thereof, is a frustration not only for him but for me too though for completely different reasons. There is nothing I can do about this for him though…He’ll normally get frustrated with me and say things like, “I told you blah, blah, blah! Why can’t you remember“. Or “You’re always tired“.

In the end, he felt that he understood so much better and that so much made sense to him.

What have I gained from my children?

For starters, they cleared the misconception I have that no-one cares or understands. I’ve learned that breaking it down and explaining things in ways that they can understand or grasp is probably key. Also, we all react differently in any given situation…be it our personality, maturity level or how we relate to things, etc.

If I was worried before about who will take care of me one day when I can’t, then I can comfortably say now, I’m not all that worried anymore. It’s not about me placing responsibility wrongly on my kids but it’s my kids showing me in so many different and little ways, that they actually do care and given the right information (or instinctively), will act in my best interest. I’ve also learned that it’s OK to lean on them and not always feel like I need to be strong. They accept me in my weak moments and love me regardless…

This little exercise has definitely brought about a shift in our house for the better.
I am proud of my children and thankful for the lessons they teach me on a daily basis.
Just as any parent, I always want what’s best for my children. I will always feel the need to protect and shield them from any ill emotion or harm. This has been my biggest driver to date. However, the biggest lesson I’ve learned from my children is…I don’t always need to protect them, that they worry about me just as I do about them and more importantly that…IT’S OK TO NOT BE OK.