Following In Footsteps

We have been on this journey of disability for over 2 1/2 years now. People speak of the norm, and some would say my family is not the norm. But for us the majority of the time my life feels pretty normal. Sometimes you do get a harsh reminder that you are not perceived as normal. For me this is coming to terms with how relaxed people are using words that are sometimes directed towards disability. I know these words are not being directed to Kian but I am probably surprised how easy these words can be said. I had a conversation with a friend recently and we spoke of the word handicapped, how not many people use that word now and it seems strange at times to hear it, though a few years ago that was the word that I would now say has been replaced with disabled. I wonder if the word disabled will be replaced in time???

Craig told me today that there is nothing better than seeing Kian's smile up close. Im sure that is the opinion of most parents, but Craig tells me that when he smiles that is what he remembers when he thinks of him at night when he cant sleep. Craig does worry what might happen to Kian if Craig and I arent there for him anymore. I have heard some tragic stories of children with WHS. It is tragic I can only imagine to lose any child. But as I have said before I dont plan on Kian going anywhere, I cant let myself think that way. What Craig said to myself which I will always remember is that in Kian's mind he is happy, he knows no other. And that I am grateful for.

When Kian was diagnosed I was desparate for information. It was the medical profession that I was looking to for answers. But like I hear over and over again from parents of children with additional needs or a disability it is parents who you most learn from. As much as I share what I can in this blog, I am quite a private person and one not to share my feelings. Private you may think, writing all for anyone to read? Like any parent in my situation I wonder why this has happened to my family. Sometimes you do not want to hear that special children only go to special parents. I am grateful to have Kian and I get so much joy and pleasure from him. Alongside that though goes the worries with the seizures and the weakness of his immune system. But the good times more than outweigh the bad.

It is lovely to hear what other WHS children are up to. I wonder if Kian will achieve that paricular milestone. WHS has such a wide spectrum, you have to keep teaching and encouraging. I have heard fantastic stories of what children are achieving. Some people may wonder why such milestones are celebrated but it is a massive achievement for our children. The children who have been wrote off or extremely underestimated.

Though Kian is only 3 1/2, there are families with younger babies that you come in touch with and you hope that their children wont suffer specific symptoms of the condition. One of these would be seizures. Kian feeds orally which we are grateful for but the seizures for us are still not under complete control. There are so many different problems that can occur with whs.

For myself it has been lovely to meet new families with children with WHS. For families I do feel it is sad for the children to have the syndrome, but nothing stops these children. They and their families keep on striving to do their best. What I found though is the new families coming through the process, you hope their children dont have any of the symptoms such as seizures, and many more things. It is possible for some children not to suffer with them. But I hear of new families going through the process of what we went through over 2 years ago. You really dont want their child or family to go through that difficulty. But then you hear that another child is suffering from seizures or they will be giving a feeding tube. You hope for children to avoid that difficulty even if your child has that problem.

From the parents that I have met, I can imagine that Kian is going to follow along certain footsteps, also I can see that my feelings and emotions will go alongside certain ones. I can also see new families going through what we have. I really hope for the world to progress with disability and for WHS so much more awareness needs to be made. Our main focus is Kian but I am aware of children who will follow in his footsteps and I feel this is so important too.

Kian does have a disadvantage in life, but there is so much possible for him. He will develop and achieve and we as his parents will help him do that.

We love that mite very much xxx

A July Update

Kian is quite well at the moment. Sometimes I feel like I am just waiting for him to catch another cold, or have another seizure. But from the last bout of seizures I knew I was going to make the most of when Kian is healthy. As Kian is getting older there is definitely less colds and illnesses, and the seizures you come to live with. Epilepsy though is unpredictable and you cant take it for granted. Some people are unaware of epilepsy but it is all around us. Some people manage with it, some are ashamed of it and some of scared of it.

This week has been a mixture of news for whs children. As I log onto facebook to catch up with what has been happening with other families, there is one little girl quite poorly in hospital, another little girl taking steps with her walker, and then another little boy leaving hospital after quite an ordeal. I feel with the connection of these families that we all share the joy of hitting milestones, and defying the Drs odds, but we also feel the pain and sadness of when one of our children are poorly. I am so grateful for the support network of other whs families, it is a massive lifeline in my life.

Alot is going on at home with finding out from services what we need for Kian that can make life easier. At this time things are going pretty straight forward. I hope it lasts.

Kian is looking steadier on his feet when he does his supported walking. I had imagined that Kian would need to be able to stand static without support before being able to walk, but our physio has said she has lots of patients who cant stand but manage to walk. That is encouraging about Kian. Kian is so wobbly that I cant imagine him standing independently for a long time. But we are going to keep walking him about the house and to and from the car.

Our OT have give us some nice new exercises to try which will be great fun and interesting, and em messy I think.

Kian has a dummy which is mainly for during the night. Im not sure whether I should be withdrawing it from him because of his teeth. His teeth do not look fantastic and there is a history connected with whs that has made me expect it. His dummy is something that he can get himself and use if he wants to. It is one of the little choices Kian can make for himself and it also does comfort him. Im not sure on this one???

Kian breaks up from nursery for the summer holidays next week, I cant wait!