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!
Oh bless you Rach! A whole paragraph to myself as well!!! You genuinely keep me sane though too!
ReplyDeleteKnow what you mean about Thea, Sean gets me through the rough times. Without him I'd have fallen apart long ago. Feel a bit bad as I didn't even mention him in my post. Oops. Really interesting to read all about who is involved in Nates care. And loving the photos too. X x x