young children also

August 2, 2008 at 5:25 am

Hi there Stacey,
During my 14 mths living with CIPD if have decided my children have much to gain from me having CIDP.
Children were 2, 4 and 6 when i first ended up in hospital (that was to be my home forthe next 8 mths minus a few nights out here and there to keep me and the family sane) Children are now 3 5 and 7 and 7 yr old today asked if i was ever going to get better!!!?
Your thread makes me think back to a year ago and how my 5 yr old coped then. As all the other replys state, i too agree with how resilliant children are as well as how well they adapt to things to enjoy doing what you can together etc.
My capabilities ranged from full paraplegia to now pretty much normal but no matter whether nurses had to lift my children onto my stomach and then wrap my arms around them so i could give them a hug, or whether my 5 year old pryed and manipulated my hands and fingers to enable me to hold a hand of cards to play fish we still managed to laugh and have wonderful times. of these i am greatful for. You learn to appreciate things in a different way (i too was very physically active all the time with my family so felt deeply deprived learning to cope with these new limitaitons) and it is with great fondness i can recall our afternoons snuggled up with the draughts board, or doing lots of reading (children took turns at holding the book – and yes they do wobble it lots so is hard to read but means longer snuggling together etc).
As i became stronger and more able i would give the children a choice. This worked very well and if i currently have a fatiguey day etc i still adapt it and find it a win win situation. Basically i am honest with the children, they know mummies arms and legs got a bit sick and so now dont work like they used to. so if we are planning our day etc (there is always so much we want to see or do anyway even before cidp days) i give them the chioce of 2 events. ie to water world or feeding ducks. (Somehting you ARE capable of doing) Firstly this empowers the children, and focuses on the positive. then on the way there etc we talk about what we will do there and that is when i then say, mums legs arent that great today so i can either go on a water skilde with you OR in the lazy river etc and then let them chose. then when you are doing it with them they think you are extra cool and that time is extra special! at least this seems to have worked for us.
As far as canes and aids etc, dont sweat the small stuff. I was near fully paralysed when i was adament i was checking out of the hospital for a few hours to be with my daughter as she went on her first school visit. I needed a seatbelt in my wheelchair to stop me toppling over. All the children and teachers were asking what was wrong etc (elder son was already at the school) and they had always seen me running in and out with him. I had to fight back tears, as these were genuinely caring people, and try and make some sort of lighter side of the truth and not scare the kids etc. you get there, after a while we called my cane the paddy cane, as i could get all the kids then!!!!!!!!!! Is very hard to in reality as you are trying to balance your skeleton from toppling over but the kids dont know that!!!
Also dont go beating yourself up, parents always find somethng to feel guilty about or feel there child is missing out on, its normal. CIDP will give you more time for your son, more special one on one time. As a fully able bodied perosn i was often almost cutting myself in two running around like a headless chook doing this for this group or that for that group etc. Now i have refocused and go with the flow. I am still active in community groups but if the job doesnt get done today, there is always tomorrow. Also people only offer to help if they truely want to so accept it. Use all the help you can get so you can then focus on doing what you really want to with COnnor or your hubby etc.
Lastly (whew what a novel!!) i dont say i cant do somehting,ie when you truely cant make it to the dollar shop. I just say, yes i would love to take you there, mums legs are too tired today, we will do another day soon when they are stronger. Lets choose a game of ?? or ??? or ?? to play.
I also had a wee draw that friends and family would top up for me of dollar shop toys and activities so if i had no energy to get out etc it was my rescue drawer.
Hope some of this helps
all the best
and yes connor will amazingly love you no matter what. (and he will be so proud of you)