#specialsaturday post- how having a child with additional needs affects the whole family

I will cry as I right this. Let's be clear about that. And not just because some of the differences in our family make me sad, but because they also make me proud.

If you could see me now you would see a chin stuck out defiantly against the world. Head held high. I will always meet your eyes people who stare.

We are stronger in someways, but i am liable to crumble when alone. A bit of a contradiction I know. We enjoy the simple things. Time together.

Special time with a special sibling is so very important. My heart broke yesterday when my daughter told me she loved the time we had spent baking and making, and that she didn't want to go to school, just stay home with me. Her way of showing me how much she had valued that time together. Special sibling has to put up with a lot- Appointments, strange new people in the house, lack of attention, fewer trips out, and lets not even mention the disastrous holiday. She is tolerant ( mostly) but worries about her brother. I hope she grows to be an understanding and caring young lady. I suspect a career in the nhs is inevitable. She already has far too much experience of special equipment. Or maybe politics? Thea would sort them all out!
It has opened her eyes to what other children go through. On a ward chatting and playing with kids with central lines and oxygen, coming to nates groups and meeting the little ones with diverse additional needs, all are hopefully positive experiences. She makes me so proud.

We are currently trying to get support for our family. To enable us to spend time as a couple, and time with thea. Hopefully those wheels are now in motion. We have learned to value so much in life, and see the world with new perspective. But in doing so have lost friends by the wayside. True ones are always there for us. Others have drifted away. It's hard for people to comprehend our situation. Some of that is of our own doing- playing things down, or just not sharing what's happening.

Another change is our need to move. We have discovered that part time hours don't a mortgage pay. And our house is completely unsuitable for Nate. Hopefully this won't be a move far. The less disruption the better. For all of us.

Simple things Nate can do make us all jump for joy, smile at each other, and savour the moment.

To summarise. We appreciate each other :)

Difficult admissions

I find it hard to ask for help. I plod on hoping things will improve when actually all that happens is I end up at the point where I sob my heart out and feel hopeless.
Yesterday was one of those days. Difficult classes didn't help. I ended up feeling angry that things at home had got to this stage and despair that no one had seemed to want to help. When we first realised Nate was disabled I was keen to access all the services we could. This included an initial assessment by the children with disabilities social services team followed by a carers assessment. As I've mentioned before we turned down the offer of respite with foster carers or other non medical people on safety grounds but were told Nate wasn't ill enough to warrant medical respite. A later conversation implied that yes they might consider it but only if we were very desperate. I think me nearly crying down the phone must have seemed desperate enough as they are coming to do a core assessment and try to sort respite.
Today I had a phone call out of the blue to say nates SN buggy was ready. After only 3 weeks! And yes I almost fainted with shock! Then I had a lovely meeting with portage. I usually only see them at groups I take Nate too but we finally got off the portage waiting list and got a home visit. As I see them every week anyway I felt comfortable enough to explain our situation and they are bending over backwards to help us anyway they can. They made me feel like I wasn't the only SN mother to have a wobble and need support. They were understanding without being patronising or nicey nicey. They knew exactly what we needed and are off to sort things.

Ive rambled on a bit. But what I can say is although I felt humiliated asking for help and admitting that, well, we just can't carry on like this, it seems that it might just be worth it.

The op - at last

So finally, on Thursday, Nate had the op to remove the huge lump in his mouth. It has taken since february when I voiced my concerns to a dental surgeon to get this sorted.
I was concerned that the lump would get chewed and sore when nates molar teeth came in. I was advised that this wouldn't happen. But that they could still removed the lump under general anaesthetic. Nate had been quite poorly over the winter, and with the risks involved, I left it.
Fast forward several months and both salt and the feeding clinic were worried it was affecting his feeding. He took a long time to clear his mouth when eating and couldn't manage lumpy food. So the process was set in motion in may to have the procedure done.
Nate then got lots of teeth. And basically every other week would be filled with screams day and night as he accidentally bit the lump, or the lump rubbed against his teeth.
This last week we were obviously apprehensive about the op, but also getting a bit desperate. It's not like we ever get a night off after all.
So Wednesday came and we informed there was no picu bed ( for after surgery) nor a resp ward bed ( for overnight) but still told to come in for 8am the next day. We turned up an the Pre op ward and there were still no beds. We were told the op seemed unlikely. Which meant if it didn't happen now it wasnt going to till after the winter season. An hr later a man turned up to take us to theatre! It was a bit rushed.
Then we had a long wait as the op that was supposed to take half an hr took much longer. After more than 2 hrs of waiting we were allowed to see Nate in recovery. He looked like he had been eating people's necks his mouth was covered in blood. But he was ok. They had had problems with his bleeding and them he had taken ages to come round.
He spent the night in picu and we were home the next day. He has been feeding great when you can get his mouth to open! And already his solids eating seems better. I can actually hear him swallow!
But we are all worn out with worry and tiredness. And could really do with a break. Everything is very hard work at the minute x

Neglected blog- a catch up

So I haven't blogged in a while. hectic hectic times.
Thea loves school, though the one week forced school dinners didn't go down well!
Nate is doing much better with his sitting and head holding, both the physio and neurologist are very pleased. the neuro has decided that we will know mo about Nate and the future after another MRI at 2 and perhaps a muscle biopsy to rule out disorders he knows Nate can't really have as he's improving.

The mouth op to remove the lump is on Wednesday. They didnt manage to move it forward, so we have had a terrible time with Nate in pain day and night when the lump is at it's fullest ( it partially drains). The op depends on nates health, and availability of beds on PICU and the resp ward. He has to stay overnight to make sure he is breathing ok. I just want it over with. Hoping the pain will stop and that he begins to feed better. This would have a positive effect on his health, weight and development. Not that I'm pinning any hopes on the op or anything....

I had the pleasure of meeting with the swanuk advisory committee on Friday. It was great to feel like I had a chance to help and make a difference ( not that I said much!) it was also lovely to meet Lauren Roberts ( swanuk coordinator) and Emma Murphy. ( hi Emma!)

And now a bit about me. I'm worn out. I'm run down. My immune system is shot to &£@? and I feel like crap. I have little energy and am starting to feel quite down. Working and getting
everything done for Nate and Thea is a battle. And I feel that my body is slowly losing that battle.

Nope I don't even have the energy to spell check this post. Sorry!