When battles get too much

I will be honest. I want to board up the doors and windows and hide from the world.

What I SHOULD do is start ringing people and getting very very angry. I have no idea where we will be in a months time. We have missed 3 payments on our mortgage, we explain every day when they ring that our circumstances have not changed, nor will they. I would like nothing more than one morning to wake up and find Nate sitting up in bed, breathing properly, babbling away, playing with toys. Fixed. I would go back to work, and everything would be fine and dandy. And now the phone calls have stopped. Next stage in the repossession process I presume.

Local authority housing is sparse. The right to buy scheme took away social housing that was never replaced as was promised. Only a few suitable properties come up each week, you bid, you wait to hear, your hopes are up, your hopes are crushed. This week was no different. We have urgent status but finished 18th. Apparently medical priority only counts on adapted houses ( not what we were told) we thought both medical priority and repossession together would stand us in good stead for a basic 3 bed house. Seems not.

I can't explain the hopeless feelings I have. I really can't. Friends have fund raised for sensory equipment for Nate, but we can't use it yet. Nate has a very impressive special bed in storage as he hasnt got a bedroom to put it in and it won't fit in ours.

I know I need to pull myself together, rally the troops and attempt to sort this mess out. But I'm just so worn out from dealing with day to day Nate stuff, the fear of appointments coming up, and everything really. Nothing is straightforward.

I wish the people who have some power would spend a day in my shoes and then say we don't need help ASAP.

My fear of optimism

I have had one of those bizarre textual conversations with my sister which has opened the proverbial can of worms ( not my sisters fault I hasten to add). The casual question of " how's Nate done today?" and me wanting to say " abso- fricking- lutely-brilliant" scares the living daylights out of me.

I find myself feeling optimistic. And I hate it. Optimism terrifies me. I feel it opens us up for a mighty fall. A shock. A blow. A sucker punch. Optimism would mean I wouldn't be prepared for such a thing. I would curl up on my bed and sob with gut wrenching pain ( again) and I panic that I couldn't cope. With such important appointments approaching I know I could walk in and face devastating news.

But am I doing Nate a disservice? I have always promised to celebrate his achievements-I shouldn't let my own fears hold me back. Should I? He's coping so well off oxygen. He's so happy and alert and, well, just lush and I want people to know and see that.

I can't wait to take Nate to his groups without nasal cannula stuck to his face. I can't wait for everyone to notice and tell him how clever he is. This could be his " moment" the walking moment, talking moments etc we probably won't get so I should be dancing about not nervously chewing my nails!

Honestly sometimes I'm my own worst enemy. But I know my son. Rules mean nothing to him and steps forward can easily turn to leaps backward.

A picture blog- special siblings

Holidays- when day trips are made easy

The husband took a week off work and we were desperate to have lots of family time together.

For us this didn't mean getting on a plane and jetting off or even staying over somewhere in this country. Our last attempt at a holiday ( to the lake district centre parcs) was a complete and utter disaster. 45 mins into the stay Nate was in an ambulance and later was intubated, ventilated and transported back to the north east for a week long stay in picu. brilliant.

Anyway day trips are hard enough ( as I have mentioned) so we are sticking to those for the foreseeable future.

Right I've gone of at a tangent. I wanted to talk about access- Good disabled access makes everything so much easier and everything less stressful.

The zoo was a nightmare- uphill, tiny toilets, packed cafes ( where a woman who struggled to get past my SN pushchair with oxygen on it shouted I should be made to fold it up). Though we still had a fabulous time there I must add. In contrast the Hancock museum ( great north museum sorry) had parking at the museum, a lift outside from parking to a wide entrance, all doors easy to get through, and a massive lift inside to the other floor. Everywhere was easily accessible.

Now these two venues are completely different but the difference it made to my stress levels was huge. Before planning any trip I think of access and feeding arrangements , especially after a difficult trip to bamburgh castle ( yes I know I'm stupid- castles are soooo not accessible!)
But you live and learn.

Terrifying appointments

A letter came today bringing with it a genetics appointment for Nate.

I was expecting it. We said we'd be back to see nates geneticist around the time he was two. But, you see, this is a biggie. He has a neuro appointment the week before and both neuro and genetics want to pool their ideas combined with another MRI and a muscle biopsy and come up with a diagnosis.
I have confidence in our neuro. He never mentions the future. Never says what Nate will or won't do. Just always asks that we have the right equipment and therapy. We first met him when Nate was 1 week old and we see him every six months. He notices everything- even subtle changes in how Nate holds himself. Our neuro wants Nate to have another MRI. He's already had 2. This is necessary as, apparently, the white matter in the brain should be laid down now. And damage that may not have shown previously may show now. So I'm really looking forward to the general anaesthetic and then the results....

And then there is nates geneticist. The less said about this person the better . But on a professional level I would like to say- my son is not a piece of meat and we are not to be talked down to. Please don't harp on about his odd/unusual/dysmorphic features. When I'm sitting kissing the living daylights out of him he's my perfect little boy and I don't see ANY of them.
Please don't suggest any more diagnoses he "might" have but you're not sure. If it involves more X-rays, scans, blood taken we will be out that door. We have been scared and terrified by you before. He is a person-a lovely little boy. Please treat him as such.


These 2 appointments may tell us a lot or a little. I'm not sure which terrifies me more. Part of me is happy bimbling along, dealing with things day by day week by week. But there is the shadow of the unknown hanging over our shoulders all the time. The-what will happen? Will he? Should we? question. I have had the pleasure of meeting (via fb and twitter) several parents of children who have a diagnosis but it's something so rare that having a name doesnt really help. Although they, when asked, can give proffesionals the name of their child's disorder/syndrome/special quality, the professional looks blank having never come across it before. I hadnt thought of that. To be honest it's the life expectancy thing that we would like to know. But would we? I mean could we prepare? Can you? Would we do anything differently? No probably not.

You see I'm rambling on. This is what these big appointments do to me. Things I try not to think of are brought to the forefront of my mind. I know I need to think of the here and now and be pleased with how Nate is doing but I'm terrified.

Military maneuvers- a day out #definenormal

Another post for the #define normal blog hop by
www.justbringthechocolate.com

It's the Easter holidays, my husband has the week off work. What is more normal that having family day out or 2?
Hmmm.

Well the only difference is the planning involved. We wanted to take our little darlings to Edinburgh zoo. This would mean a full day out, about 6 hrs total in the car, 2 liquid feeds for Nate and solid lunch. We also needed to fit in 2 x 30 mins off oxygen attached to his sats monitor.

(I'm blogging from the car on the way home by the way)

We had to be up early to feed nate and let him have 30 mins off oxygen before we left. We took 2x 60 ml syringes, ph strips, 2x fortini, spare nasal canula, hyper fix, suction machine, full oxygen tank, boiled water, lunch, then the usual nappies wipes etc

Disabled spaces were close to the zoo entrance- great. However I'd forgotten how hilly the zoo is. Jet propelled natie pie would have been good!
We are all tired but had a great day.

Now we just need to find an upmarket restaurant ( McDonald's) for tea and another 30 mins off oxygen

So oxygen weaning has begun

Well we have started the weaning process. Not the usual baby weaning of going from milk to food, but from a trickle of extra oxygen to just air.

Nates first week of weaning will involve 2x 30 mins of being off oxygen. The ccn checks him monday to check his weight. Nate must continue to gain weight for the weaning process to continue. He must also be able to keep his sats in the 90s and not struggle.

Today is day 3 and because this is such a massive event I am blogging about it separately in www.oxygenweaningdiary.blogspot.com

Fingers crossed.

We expect a bumpy road