When reality slaps you in the face.

So along the veins of my Reaity Bites post I decided to do a bit of a feelings purge. I have been feeling torn between writing this or not. It may help me process things better, but it is going to sound like a pity party for one and I hate that idea. It also feels like a betrayal to my gorgeous man... I try and stop any negative feelings about the impact he has and will continue to have on our lives for... well, forever most likely.... before they even get to the surface, so the idea of writing them is scary.

Today was a day they they did and I moped and felt sorry for myself all day. I hate days like that. I feel like a horrible person. 

Today was a day that the disability, it's severity and it's permanence ate me from the inside out. I don't know why it hit today, it was not a terrible day for Nico, and overall, I have been feeling like things are starting to happen in terms of respite and Nico's education. Yet it was so strong I felt like I was suffocating.

As I sat, feeding him his 4th "meal" of the day at 2pm, I couldn't figure out why this felt so much harder than having a regular child who ate at similar intervals.

8am Breakfast: Weetbix
10am Bottle
11.45 Lunch:  Fruit puree
(sleep)
2pm Bottle
3.30 hard/biting food like a baby cracker
5pm Dinner: Mashed veges
7pm Bottle

Swap "bottle" for "snack and drink" and I could be talking about any child, ages 6 months onwards right? What's the big issue? You are a mum, feeding your child is your main responsibility for goodness sake. Suck it up, Princess, it's what you signed up for. Only it isn't. Every mouthful of food that has gone into his mouth for the last 2.5 years, I (apologies Husband: we) put there. There is no "Here is your breakfast sweety, have fun with that and try to get any on the floor" or handing him a cracker/ bread/ piece of fruit and hoping that the majority of it doesn't end up in his ear or hair, like Brooklyn's seemed to. The simple act of giving him a cracker is a 15 minute sit down exercise for us. The idea that it might (probably?? I don't know) be the case forever, it's daunting.

Then it leads on to the other scary thoughts.
PEG feeding. Forever?
Nappies. Forever? (I don't know, I haven't even mentioned this to his docs)
Sleepless nights. Forever?
Carseats. Forever?

Every single new baby, every pair of siblings playing together, every premmie hitting a milestone no matter how delayed, makes me feel like an evil person because it makes me that much more aware and jealous of what I don't/ won't have in my life. It is not the way my mind is used to working. I am not naturally a "poor me" person, I don't get jealous and I am usually pretty good at focussing on what I do have and not what I don't and I hate myself when I have that reaction.

I feel like I am in a parallel world. Quite often I feel like I will end up back in the "real" one and everything will be normal. Nico will grow up and grow out of all this, move out of home and have his own life, connected to but indepedent from us, as every parent wishes for their child.

When the truth of it all hits, like it did today... it feels like someone has thrown me from a plane without a parachute: I can flail my arms arms around and believe that I can teach myself to fly, I can claw at the air trying to climb back to the plane but ultimately I am just going to hit the earth with one giant thud.