Frustrations and amazement

Frustrations

I am writing this from Nates hospital bed. Yes another hospital stay.

frustration 1
We know when our child isn't well.
As we left hospital on Sunday Michael stated "we will be back". Neither of us felt comfortable leaving hospital but a bed shortage meant we were shoved in a bay on a random paediatric ward and left to ourselves. We went home as the drs were happy with Nate and discharged us.
Suffice it to say this wasn't the BEST decision ever made as yesterday my son decided to drop his sats and turn blue. By the time I'd hoofed up the oxygen and rang good old 999 he had picked up. The paramedics were lovely and Nate grinned happily at them ( little sod). So we had an ambulance ride, 4 hrs in a and e and then back onto the random ward but at least we have a room now. He is being observed. His oxygen is coming down gradually and he is getting bored ( always a good sign). His improved sight means cbeebies is of interest to him now which is amazing.

Frustration 2
We finally get upped to "urgent" on the housing list and they bid for us on a house. Michael drives round, finds thehouse has some windows boarded up, others smashed, and the garden broken into. Hmmm not convinced.

Frustration 3
I now have a beautiful baby niece called kara. And I've only got to see her one the day she was born. I want to be there for my sis and support her.

AMAZING

I have started a bit of fundraising for Nate. I think we have spent 18 months trying to keep him alive and fighting for the basics he needs to function. Well that's not good enough. He needs stimulation, he wants to develop, he wants to sit and I need to start doing as much as I can to help him. It's my job. My daughter told me she was going to "tell her school she was baking cakes and selling juice for her natie" and then got a £2 coin from her money box "theres £200 for natie mam" . I tried not to cry and just about succeeded.
What has amazed me are my family and friends who are helping support us. We have had large donations already. my junie friends are doing sponsored shenanigans for natie, other friends are arranging fun days at work and doing their very best to help. I love you all xxx

St Oswalds Hospice

When you realise your family needs respite it is a massive thing. To actually get that respite is another huge challenge.
I cried down the phone at the children with disabilities team from work, and pretty much had to humiliate myself. they wanted to know why family couldnt help. why a nurse couldnt sit up with him in our house. why he couldnt go to foster carers. All of this i have mentioned before, and to be fair, is pretty self explanatory. Fortunately we had a team of childrens community nurses and portage workers behind us, refusing to let us buckle, and writing reports in our favour. We were granted respite.
Being granted it came as a shock. We were left feeling worried to leave him, pleased to get it, sad he qualifies for it, and generally apprehensive all at once. Thea in particular had concerns. We had a family visit and felt reassured about the hospice. Everyone seemed competant and empathetic. But still we felt nervous.

The first stay
We arrived at 2pm armed with a car full of equipment, and a suitcase, oh and lots of theas toys. We met the nurse who was to look after Nate that afternoon and very quickly felt at ease. Its strange to describe but you kind of absorb the chilled out atmosphere. Our nurse took great pains to get to know us and nate. his habits, what he likes etc. but whats lovely is to watch people make a fuss of him, to want cuddles. Most people are scared, and yes i know these were nurses but it didnt feel like that when they fussed and snuggled him and i beamed with pride.
Thea took charge of our room key after an hour of aclimatising herself. unpacked, and made herself at home. She spent ages trying on the dressy up clothes, painting, glueing and sticking, playing basketball, playing in the snow in the play area, and yes generally getting lots of attention.

Nates time there involved the sensory room, music therapy, hand and foot massages and lots of cuddles.

I stayed in his room the first night and was brave and left him downstairs and stayed in the guestroom upstairs with thea. thea, who ive discovered fidgets all night and grinds her teeth. delightful child.

We have to stay overnight until nate settles there during his stays. but we were made to feel that there was no hurry to progress to leaving him there. no pressure, just support.

We left feeling relaxed and looking forward to our next stay

Thankyou St Oswalds Hospice and everyone who raises money for them

Special saturday- "support from team Nate" ( inspired by @tricky_customer)

Go team!

So where do we get support? The answer to this question is "from a multitude of sources", some offered readily, some begged for.

Friends come in different categories..

The ones i see. The ones that ring/text when things get bad. the ones who visit us in our many hospital stays bringing emergency burgers or lovely feasts. The ones armed with costa coffee. The ones who drop by for a cuppa and a chat or invite me for drinks. You are appreciated!

The ones i dont see. My facebook friends. My junies ( i love you all) you are hilarious and always there for me ( see post about "friends ive never met") New SWAN people. Twitterers, my goodness, what a support network. Lovely people, spread far and wide. tremendous support. My old DIS peeps. scarey how long weve known each other. everyone having a tough time.

Little em, a special category for emma who is always there. text her probably at least twice a day. :)

Family
Even when they cant really help with Nate physically, they are there emotionally for us.

Professionals
i am in love with our portage team. lovely lovely ladies who are always positive, helpful, and there running groups, doing home visits and generally being lovely. Have i mentioned they are lovely? They get cried at often too!
our community chidrens nurses. no words really to explain how fab and supportive they are.
Children with disabilities social worker. had to beg for one. she seems nice. we will see how much she can help us.
Paediatrician. hated her with a vengence when nate was first born. every day in scbu she suggested more tests, more things that were " not typical", the "bad news queen". this later changed to grudging respect. and now complete respect and i genuinely like her. she coordinated services brilliantly when we were discharged from hospital and is very supportive.
Ward nurses. fab fab fab. Know us and nate very well.
Respiratory consultants. again bearers of bad news. guarranteed to have me in floods of tears on a regular basis. However one saw nate at 5 days old and knows and appreciates just how far he has come.
Neurologist. lovely man. Always positive. bit too fond of mris.
Feeding/dietician/SALT. very experienced. dietician obsessed with weight gain tho and annoys me at times. probably because she is right and i dont like to hear certain things.
Vision. Opthalmologist didnt refer nate to VI community team. grrr.VI team brilliant and so highly skilled.
Physio/OT. Brilliant lovely people. they fight for everything we need.
The health care assistants and rainbow trust who come to our house and give me "time off" or time with thea. They have made such a difference in our day to day lives.

The Jeffares household
We support each other. Thea keeps us sane. we would have cracked up long ago without her!

I promised I wouldn't stress about money.. But...

I'm really sorry. I said I wouldn't get stressed about it. I laugh it off if people ask. My family is all that matters.
But in all seriousness I am incredibly stressed about how we are going to manage.

Disability and sickness can happen to anyone. It isn't a "lifestyle choice" as an mp suggested. Believe me i'd love to have 2 healthy kids, my job, money, a mortgage. I didn't deliberately disable my son to get my sticky fingers on his DLA, I don't exaggerate his complex needs for measly amounts of money.

The financial reality for us is bleak. I have had to stop working ( but to be honest even my pt wage wasn't enough). Yes I have chosen to stop working but I'd like to know where I would manage to do my marking? At nates bedside in hospital? In waiting rooms? I was rarely there with hospital, ot, physio etc appointments. Who could look after Nate as well as me or Michael? My mam can't even lift him anymore and both my mam and mil are wary of his equipment and just how quickly he becomes seriously ill. Michael did a damn good job resusitating nate but thats too much responsibility for someone else. Financial problems were already building due to unpaid maternity leave, hospital stays, bills and food paid for by cards. It all adds up on top on manageable debt we had before.

So we are doing the thing that begins with "b". And it's expensive let me tell you. But it's the only way to start again. When your circumstances change as dramatically as ours have there isn't any help available. You struggle on until you reach breaking point.

We are bidding on houses each week available with the local authority as our house is a- unadaptable and small and b- we can't pay the mortgage anymore. They have told use we have significant high medical priority ( we have had no luck bidding so far) but not to worry we will get extra points when we are actually made homeless. Well that's just fucking brilliant isn't it. I have our portage worker and social worker on the case but portage were told we would end up in a hostel or b and b if homeless until they found somewhere. Portage told housing that was absolutely ridiculous with nates problems.

In addition our mps don't exactly fill me with positivity pushing through welfare reform to effectively screw the sick and disabled. It's nice to know that if my son survives to adulthood he will remain totally dependent on us financially for all his life

Last time I saw my dr for antidepressants he asked if I still felt like a donkey on the edge( I had used that shrek quote the previous time) and I can honestly say this donkey is most definitely on the edge.

If our receivers/ creditors/ judge are reading this *waves* . We didn't run up debt on flash cars, holidays, clothes, shoes, nights out. It happened because you can't predict the future. And you try to manage as best you can for as long as you can.