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.

Hope.

Again, there has been a big lapse in time between posts. Things have not been the best. There have been the usual ups and downs of Nico's sleep/ daytime unsettledness continue and the passing of my mother in law, much loved Nana Shona relatively unexpectedly.

I made the trip to Auckland alone with the children, my husband having left for Christchurch the day prior. Just getting tickets organised at such short notice, just before Christmas was a very time-taxing (and expensive) exercise in itself, let alone figuring out the logistics of negotiiating an international airport with a 3 year old, 2 year old in a wheelchair, booster seat for on the plane and luggage. I dropped the kids of in Auckland with my parents and flew to be by my husbands side 10 hours later.

Throwing my family into the maze of looking after a PEG fed, immobile and non-verbal 2 year old was not something that could be avoided but thankfully they came out the other side fairly unscathed with a small insight into our lives they hadn't really seen on visits.

Apart from that there had been no major events until last week when we had our visit to Royal Childrens Hospital to meet with a paediatrician in the developmental medicine department. We stumbled upon this unit when I called Cerebral Palsy Support Network to find out if there were any paeds who specialised in CP or at leaast had a bit of interest in it. His previous doctor had done next to nothing in a year; all I got for my $100 appointments was "How are things? What is happening? Ok, come back in 2-3 months and we will see how it's going"  >> Fast forward 2-3 months >> "How are things? Oh still the same? Ok, come back in 2-3 months and we will see how it's going"  etc etc. Some how it took me about 16 months to pull the plug on him. I was over Nico and myself being put in the too hard basket, and/or being labelled "the neuro baby and his neurotic mother" and needed action.

Foyer of RCH (from rondo.com)

So FINALLY Feb 3 rolled around and I packed our little miracle into the car at 9am for the hour trek to RCH. It only just opened at the new site in December and it was A-MAZING. It is ultra modern and welcoming. There is little hospital-like in there, it has more of a theme-park meets modern office meets spaceship. Of course the aesthetics of a hospital is superfluous  like that orange swirl of liquid top chefs decorate your plate with before placing food. It gives a good first impression but if the chef couldn't cook, it wouldn't be much use. The paed we met with, who used to be head of the Developmental Medicine team, was beyond a Master-Chef.

I repeated all of Nico's vast history (which fills 5 x oversized medical folders at Monash Medical Centre) and my own feelings of frustration and being left to fend for ourselves. She spoke to him, observed him, felt his excruciatingly tight muscles and told me what I already knew: He is a bright boy trapped inside himself. It is not going to be a case of finding one piece of a puzzle to have it all fixed. It was going to a long process and a combination of things causing his unsettledness. But she cared. And she got balls rolling. She made a list of things she wanted done. Medication change to relieve his aching muscles. A multitude of blod tests including but not limited to: full blood count, vitamin and mineral levels, tests for kidney and liver function and an abdominal ultrasound. She believes that these will all come back normal (except maybe iron and vitamin d deficiencies)

When we got down to how we coped, I had a meltdown... nothing new... happens every time i come within 10 metres of a medical professional (and parking security attendants at hospitals i found out later in the day, but that is a different bolg post. One I will write entitled "Most embarrasing/inappropriate/uncomfortable moments I have had a meltdown") I explained in a high pitched, staccato manner befitting of a 3 year old who has lost their prized possession, that we had no practical support, no family within a 4 hour plane trip and how we stumbled through daily life feeling like we weren't really living.

She got on the phone and made a call to Very Special Kids. It is defined as a childrens hospice on its website but its a place where parents can leave their children with medical professionals on a semi regular planned basis to take a break from the 24 hour demands of a child with high medical needs. It is what we have been screaming for for over a year. A break that lasts more than 4 hours, a break where we can pretend to have something resembling a normal life that does not include tubes and meds and trying to ease muscular contractions of epic proportions that make your heart break into a million pieces. A break from being woken at random 1-4 hourly intervals. They will put Nico's case to their meeting next Friday and we will know what kind of support they are willing to offer. I am hoping for a weekend a month, I will be ecstatic with a weekend every 2 months and I will be grateful for anything at all.

I left RCH on a high, feeling a change in the air that could not come too soon. Relief that it had not been a waste of time, relief that we have someone on our side and hope that Nico may be able to start being happy for more than the occasional day here and there.

And to close: A few of my pics as to assure you that as miserable of a picture I have painted about our life pre-RCH, we do have good days, and we do have moments of normality:

Enjoying summer

He sleeps!!