Thursday, October 13, 2016

My little girls

My daughters were the first people I told.
Henry Doorly Zoo - water park

Yes, there is a water park in the zoo!!
When I first found out about my tumor I immediately thought about my kids and my husband - I of course told him as soon as I got off the phone with the ENT and he was upset (I could tell even though he was pretending pretty well).  He and I discussed talking to the girls and he thought we should wait until I had more details.  Seemed like that was a good plan, but I just don't like to keep things from them, I can barely keep their Christmas presents a secret!

The day I found out was the same day I had a surprise trip planned for a girls trip to go to Omaha...if you have never been to Henry Doorly Zoo in Omaha, NE I highly recommend you go it was amazing!! It was one of the best mom and daughter trips we have ever had! We stayed in a hotel, went swimming, had breakfast in bed, did a riverboat cruise on the Missouri River and even surprised my youngest with a visit to see her best friend.  It truly was an amazing weekend!

I choose to tell them as we were headed home, I didn't want to have them thinking about it the entire time we were there but  I wanted to be able to tell them without any distractions and ample time to discuss it with both of them.

They are well aware I have suffered from headaches so it was the perfect way to bring it up to them. I talked about how I had gone to see a doctor because of the headaches I was getting and that after the MRI they did they found a brain tumor.........a little back story is that they have been through having to understand tumors so it wasn't a new thing for them.  Their cousin had a brain tumor removed when he was 4 years old called Juvenile Pilocytic Astrocytoma and he did amazing literally had emergency brain surgery and was home less than four days later HE WAS AWESOME!!  Fast forward to 2015 and my 18 year old cousin goes in for an x-ray due to pneumonia and finds out she has a mass in her chest and was diagnosed with a tumor called Ganglioneuroma.  Both of their tumors were benign and while my nephews tumor was also a brain tumor it was completely different "genetically", my cousins tumor was in a different location but more similar being as her tumor also grew from schwann cells and while there is also no known reason that it began, there is a genetic condition called Neurofibromatosis type 1 that can cause the growth of these tumors.  The genetic condition for acoustic neuroma / vestibular schwannoma is Neurofibromatosis type 2.

My girls of course had questions regarding surgery, scars, compared me to my nephew and then they seemed to back off and not really want to talk about it much more.  I had to respect that and try my best to put on a strong front to avoid making it a bigger issue than they needed to be aware of.  I would not hide it from them though, I still did my research when they were around, they watched surgeries with me and looked at scars with me and eventually they got fed up.  At one point my oldest (10 year old) straight up said "Mom, do we have to keep talking about your tumor and looking things up?" I told her I was going to continue doing research because it was helpful for me but she didn't need to watch or look at the computer while I was doing my research.  She also told me she didn't want to visit me in the hospital, I knew this was out of fear of going to a hospital and had nothing to do with her not wanting to see me so I said it was her choice but at some point I would be missing her.  I also told her I would still talk about it but that her and I didn't need to discuss it, she was content with that answer and it worked great.  My youngest (7 years old) played along with her sister and had similar feelings.

At one point I realized that maybe I was doing "too good" a job in being strong and not making a big deal out of it, that moment happened when I was getting ready to go to a simple doctors appointment and my 10 year old said " So mom what time is your surgery and when will you be home?" I literally laughed out loud and reminded her that this was just a doctors appointment and surgery wasn't scheduled just yet. I began to realize they didn't know their mom could possibly be in the hospital for up to 5 days or that my surgery would last 8 plus hours so I started thinking of ways to tell them those details without making their little wondering brains come up with crazy situations that were far fetched or unrealistic.

That opportunity came around at just the right time!  I was talking with my friend and we began discussing Halloween, by this point I knew me taking the girls wasn't going to be an option so she was offering to take them for me (my husband has to work Halloween night and can't take them either).  It was the perfect opportunity to talk about it.  I told the girls they get to go trick or treating with her and they were excited, I then said now she is taking you because I can't go since I will have just had my surgery....the wide eyes and questioning looks then glared back at me, I said I could still be in the hospital, that then began the discussion of how long and how many.  It was the best way to get that part of the discussion taken care of and the last piece of the puzzle for them!

I have them all taken care of while I will be in the hospital, certain friends assigned to certain days and certain activities. They have been amazing little girls and have been a tad more helpful around the house when they notice I am having a hard day and yet they still manage to be their crabby little selves and talk back and whine at all the right moments :) but overall their support has been wonderful, the extra three hugs every morning and the multiple kisses goodnight can never be enough.

Our other mom daughter trip to Bear Lake in Utah!

My daughters are special and they are my stars and my moon.

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