theaandnatesmam: Then and now

This is a post about SWANUK.

It's a bit of look back over the last 3 yrs. I hope you can see how SWANUK have helped us along our path and vote for them in the national lottery awards http://www.undiagnosed.org.uk/the-national-lottery-awards-2013

Back in the dark days

This is how I think of the beginning of Nate's life.

In recovery after Nate's birth

Thea with Nate

We were gifted a very special child. One who was so deeply reliant on us we thought we might buckle.
Nate was born on time and looked an odd colour. His body was frozen in a " frog leg shape" and he did nothing. Eyes didn't open, no responses to light or sound, not even to those hospital bins that crash closed. He didn't make a sound. It was 3 weeks before SCBU nurses told us one morning they had heard odd noises coming from his little room and went in to find him actually crying, he was showing he wanted food. At that stage too his little body had begun to try to move-legs but nothing else. He was moved out of the incubator but needed oxygen and an ng tube for feeding.

We came home with oxygen. To enjoy the time we had together, which was implied wouldn't be long. I did things like buy a multi functional black dress, just in case. That first year we had many probable diagnoses, all involving short lives, none of which it turned out Nate had. At 3months old Nate went for a sleep study in hospital, he emerged many many weeks later with a ventilator. Again we were told many truly dreadful things about his future. Nobody expected much from Nate, and we thought the worst but hoped for the best. Nobody could tell us if his many problems/issues would improve. Nobody gave us hope only encouraged us to "enjoy the good times". I desperately tried to find people like us. People who were caring for a child and were still looking for answers. I was devastated when I found the old SWAN website was inactive and set up my own mini forum to try to make contact with other parents (without much success). There I found my now good friend

http://littlemammasaid.blogspot.co.uk/?m=1

Thea and Nate when we escaped SCBU

Later we found that SWAN had been given

lottery funding and I was one of the first to join

the SWANUK facebook group. For people like

us who have children with undiagnosed genetic

conditions having a way to talk things through

was a life line. Myself and little mama bonded

over our swans abilty to turn blue and stop

breathing, albeit for different reasons. Our little

group of parents grew slowly at first and we

shared experiences, testing processes,

hospital stays, and hope. Each of our children

is different and we celebrate each SWANs

achievements. Simply seeing a child take

longer to reach a particular milestone, but get

there gives us all a little bit of hope.

Nate during one of his many hospital stays

Gradually Nate became stronger. He started

to hold his head , he rolled, he took interest in

his surroundings, he regressed after dangerous

and life threatening respiratory infections, and

SWAN parents were there every step of the

way with us.
SWANUK grew more, and local groups began

to form. SWAN parents managed to meet

nationally and locally. Information and advice

was cumulated and added to the new SWAN

website ( which is full of HUGELY useful

resources and information. I found twitter

and started to search out other SN mams

and read their blogs.

I found http://www.lookingforbluesky.com/

who showed me how to blog and who also

has a young person without a diagnosis.

Blogging was therapeutic and helped me work

through my own issues and difficult times;

leaving work, declaring bankruptcy, moving,

and getting on with living. We went on local

TV to raise awareness of not having a diagnosis.

Now

My family, by Thea aged 6

Well now I have a little boy no longer on daytime oxygen, but still ventilated. He rolls and laughs, hits toys and enjoys sensory rooms and textured things, and can sign for himself, more and food. Nate has just had a gastrostomy for top up feeds but has been wolfing down solid food. He can hold a spoon and try to feed himself. He is happy and loves us. We have fought and pushed for the "right school" and "right equipment". We took him to Brainwave ( a place for therapy we would know nothing about with SWAN parents discussing it) and doctors actually think his future is brighter. A stunning admission after constant gloom. Living without a diagnosis is hard. We love Nate for who he is - a diagnosis wouldn't change that, but it could help professionals who treat Nate understand him better, and could give us an idea of what to expect in the future.