Daily Blog

I don’t really notice that Naya has special needs until I see her with other kids. And then it hits home how delayed she is.

I think she has done tremendously well…and our favourite thing to hear from people is that “they would never have guessed” she’s been thru what she has.   But then you spend 10 minutes with her and you soon realize she is different.

Adrian and I have become self isolated. We don’t socialize much.  It’s like we’ve forgotten how.  Sometimes I feel so damaged that I don’t know how to relate to others. It’s been 6 yrs now and we are so different than who we used to be.

Sometimes I feel like I’m more forgiving. And others I feel like I don’t take bullshit. I value happiness. I feel that life is too short not to be happy. To put up with someone who treats you poorly. To work a job you hate. To do something you don’t want to do. It’s not worth it. Because at anytime, it could end. I know. A little morbid.

But i get it. Life is precious. And it’s not a guarantee. With every surgery there is a chance she won’t wake up. Or she’ll wake up different from who we’ve known.

The phrase I hate to hear the most?

“It will be ok.”

What the hell does that mean?  If she wakes up a vegetable, is that still ok?  Fuck you.  She might die in the OR. Is that your definition of ok?  No. For most people that’s not ok. If you don’t know what to say just don’t say anything at all.

I think part of why we have become isolated is just that. The things that people worry about are so trivial compared to what we worry about. We worry about life. And death. Other people worry about if their next car will be a BMW or Audi or Mercedes. Yeah.. I know. Suck to be you.

I’m literally going crazy.  My child is home.  Surgery was a success.  She is recovering well….it’s great!  I am so grateful.  But I’m falling apart.

I always break down AFTER we get home from the hospital.  After the emergency, after the surgery…after I stay strong for my daughter.  It’s now that I crumble.  My emotions get the better of me.  I start getting upset and angry that’s its happened again.  I cry, I drink, I eat junk food….I run until I feel like puking.  I finally let my guard down.

And now we throw in what seems like 2 children in one – the seizure meds.  The angel and the devil.  On one hand preventing seizures is critical.  On the other, they make my child UNMANAGABLE!!  The anger, the temper…the panic and the anxiety! She is miserable…and so am I.

So combined with managing myself…and managing a child who is not herself, I’m in a dark hole.  Waiting…and coping minute by minute…until that light at the end of the tunnel starts glowing brightly again.  Meanwhile…I’ve polished off half a bottle of wine…and its only 5pm.

Our little family ❤️

Mommy and Naya

Post surgery and she’s doing great!  Happy 2018! To health and happiness always…💕

Well after months of knowing something wasn’t quite right and holding our breathe it happened.  Naya woke up unwell, saying her shunt hurt and then vomiting.

Since September when we realized fluid was building up around her shunt valve we have been expecting another surgery.  Days turned into weeks…and weeks turned into months.  People kept asking how she is doing and I kept saying she is doing good!

Couple weeks ago I noticed there was a A LOT of fluid around her valve and she said it hurt when I tried to do her hair.  I started to panic.  Christmas was coming.  We were having guests come stay with us….we were having a huge party with ham, and turkey and 2 beautiful snowflake cakes!!!  Just our luck I thought….it’s going to happen.  But I kept hoping…as long as it didn’t happen on Dec 25 it was ok.  And we made it!!  Just barely…

Surgery went well.  The catheter in her brain was blocked.  So Neurosurgeons Dr. McDonald and fellow Dr. Goodluck decided to move it.  They kept the valve behind her right ear, but instead of having the catheter and tube run horizontal, they ran the tube up vertically having it come out of her skull at the top of her hairline and then down to the valve.  Thank goodness Naya has thick beautiful hair.