Tuesday, 20 September 2011

My concerns as a disabled parent.

                                                                  #33359 Clip Art Graphic Of An Emotional Caucasian Man Lying On A Couch And Gesturing With His Hands While Venting To His Shrink A Middle Aged Woman Seated In A Chair by DJArt
Ok this is a therapy session for me so I apologize now to any one reading wanting a helpful blog. Maybe it will help others as it shows my human side and equally shows what a disabled parent worries about.

I have a wonderful little boy, a child I never dared dream I would have had in my life. When my husband annoys me I never fail to think how grateful I am to him being in my life and giving me kindness, friendship and normality. I never thought I would be acceptable to marry let alone mate with haha! I had had previous boyfriends that frankly prayed on my feelings of low self worth and worked on me feeling worse usually because they had huge social difficulties and insecurities themselves. So I dumped them! At least my parents had worked on me having belief in myself in order for me to do that.

I had a fantastic childhood, been brought up with a good education,two parents who always put their children's needs before their own. However despite having friends,I have spent a lot of lonely times growing up. I was wheelchair bound at times and so couldn't go out to clubs or pubs as a teenager, I didn't start dating till I was in my 20s. I couldn't even go into a park to play with children or splash around a pool easily when I was very young. As a result I made "strange" friends, friends who were not very good socially,lack empathy or thought, didn't want to go out much or have any ideas that extended from home life. I used to find these friends dull in all honesty as I didn't have the physical body to do so many things but I had the mind set.  I don't want my husbands and my physical illness ending up in our child not getting access to a normal and happy peer group. I stopped Bounce and Rhyme because frankly my son was too young to get anything out of it and I ran from it because of one ill educated woman being rude to me and I am angry at myself for being so weak. I know I have to try again and put up with the odd looks from other parents etc. Our son deserves every thing and by isolating him from his peer group it will no doubt set him in bad stead for being a fun and happy child at Primary School. I don't want that for him.I want him to make friends that know how to have fun, have a good imagination and there for him. I dread going into these parent and child groups but I have to try for my son.

Then there is my treatment, because I had arthritis at such a young age I have a very slight frame and tiny joints. I therefore have to go on a 6 hour round journey to London to see specialist surgeons and if I need surgery I have to be so far from my family. I have to weigh up the pros and cons of going to London now. I can't just say my parents took me all the way from Scotland because it was the center of excellence for Juvenile Arthritis. I have to consider that that is what they did for me as they wanted to do the best by their child but what is best for mine? On the one hand my son will have a mummy who has the latest technological advancement in replaced joints, my plastic knees have lasted since I was 16 years old and am now 34! Maybe two weeks in a London hospital with out seeing my husband or child is worth it if it gives me a better quality of life and therefore I'd be a more well mother and wife? If I go else where will there be a surgeon willing to take my specialist case on locally? Will he or she be as good as the London chap? I am off on my 6 hr journey on the 23rd of Sept, fortunately I have grown up with this surgeon so he and I have a good relationship, I'll check his address book out for mates who might tackle me and my strange body!

One of my best friends and my chosen victim to help out on Wednesday, mwahhh hahahahaaaa.
Then there are concerns about our son and how big he is getting. He is very healthy and tall for his age, he is not yet nine months and already in 9-12 month clothes and rapidly growing into if not out of these soon! He loves his food so he is no lightweight! We can not get on the floor to play with Christopher. Therefore every thing is done on the bed. He can sit up on his own but he really is showing no signs of crawling yet, he learnt last week to roll over on his own. Somehow his physical development seems to be slow. I was walking at 10 months old, there is no way Christopher will be. I fear this is because my husband and I can not sling him on the floor and pick him up, we can't bounce him on his feet in our hands so we struggle to put him into his door bouncer to mimic this. The door bouncer works but boy are they all a bit hard work! I am not an over anxious mother but I don't want our disabilities holding our child back. So I am going to have to call in the troops in the form of my sister and parents. We have good friends but none of them have children and I think feel a bit scared of our son so they can't help but I might have to force ably enlist one of them to do floor work this Wednesday, he could do with some daddy practice for his future any way!
See he is huuuuge hahaha. 

Finally its car seat trial time again, OH GOD! I need to find time to get along to Mothercare to start testing them out once more. The Maxi cosi pebble is good for now, still a bit rubbish to get him out of and blooming heavy. I think I may look into an axis seat as these turn 90 degrees to face the car door, sounds good just need to motivate myself to try errrgggghhhhh!

Ok moan over every one. Thanks for reading I promise the next blog will be up beat and trying to help :o) x

No comments:

Post a Comment