When Freddie was born in June 2010 even though we were told he had a syndrome we always thought he would be ok. Even when he started being tube fed i always assumed he would work out how to feed in a few weeks & everything would be normal. Even when he was slow at meeting milestones i assumed once he got there he would be a ‘normal boy’ I think for the 1st 6 months i always thought eventually he would be ok…despite the fact he wasn’t laughing, or playing or feeding and had an endless list of issues he was still ok to me. He would catch up…he would be ok….my son wasn’t disabled…
2011 opened our eyes. We had 2/3 appointments a week and Freddie began to take over our lifes. We were constantly fighting doctors for information on Freddie but they had just had no answers.
In January Freddie went into hospital to have a gastrostomy tube fitted. I was unsure whether i was doing the right thing. His feeding was still bad but did i really want him to have an operation when he was still so small & fragile. But he was constantly pulling out his nasogastric tube & his nasal passages were so small that repassing it was so traumatic for him and he would get awful rashes on his face from all the tape. So the op was done & life was made a lot easier! We went on to have another op 6 months later to change the peg to a mickey button.
In October after a big fight with a very annoying doctor Freddie got diagnosed with Epilepsy. The doctor who had never met Freddie before tried to put the odd movements down to Freddies normal behaviour but after a big argument we finally got it sorted. We were sent for an eeg scan & although he didn’t seizure while he was hooked up the waves on the scan seemed to be consistent with an epileptic child. Funnily the diagnosis never really affected me. I think alot of people being told their child had epilepsy would be mortified but i think Freddie had so many issues that we just took it in our stride & carried on. Not sure what the future holds with the epilepsy but for now it’s sort of controlled by medicine.
Freddie had an MRI scan that came back inconclusive, Craniofacial team couldn’t decide whether to do major skull surgery on Freddie & hand doctor wanted us to wait another year before looking at doing surgery on his thumb. We saw Heart scan gave us good news as the hole seemed to be closing & we were given glasses for Freddie to help prevent an inturning eye.
Developmentally Freddie was slow. I always used to torture myself by looking at the developmental milestones to see what Freddie should be doing but i’m trying to focus on the good things Freddie can do rather than focus on what he can’t do. By the end of 2011 at 19 months Freddie had managed to wiggle around the floor on his back and is sitting up for about 10 minutes. He is beginning to communicate with shouty noises and is beginning to show a bit more interest in toys…as long as there is a part he can spin on them.
When i look at Freddie now i can see that he won’t just catch up. His behaviour is very different from what you would expect from a ‘normal child’ As much as it breaks my heart to see my baby boy not doing what he should be doing & what i want him to do i know that if i’m ever going to get on with life i have to except Freddie for who he is. I need to stop dwelling & getting down over the things he can’t do. Stop comparing him to other children & try to just enjoy him & his little ways. Possibly easier said than done.
In 2012 we should be getting help from social services with Freddie and hopefully begin looking around some special needs schools. And with the amount of hospital appointments already building up we may even get some answers to whats going on with him.
2011 for us has been a very strange year. We have gone from being a typical family to suddenly being thrown into what feels like a whole new world. A place were you feel like an alien and like you can no longer relate to people or people can no longer relate to you. Until you have a disabled child or spent alot of time with one you can never understand how hard & challenging it can be. Having children is hard enough but having a child like Freddie is beyond hard. It pushes you to breaking point, on one hand you want and need help but on the other you don’t want to leave your baby with anyone else. In 2012 alot of decisions will need to be made surrounding Freddie. I just hope whatever we decide to do works out for the best and that 2012 is a good year for us.
Also thank you to all the people who have supported us through 2011. Some amazing people xx