Becoming a mother to Orin
Becoming a mother is without doubt the most incredibly emotional life changing experience I have had. I could probably ask any mother and she would agree. It really is a joyous journey for us all and it may never cross our minds that the baby may be unhealthy or it may have a disability. Unfortunately it does happen and discovering our child has a disability can have a devastating effect on our lives. I know only too well the effect, as my fourth child Orin has severe speech and language delay and Autism. So how do we shift our feelings knowing we are having a healthy dare I say normal baby to allowing ourselves to accept that our child has a disability and what will that mean to us? Or even the World?
Throughout the whole process we may forget to even ask the most important question of all. What are these special inspirational souls coming to teach us and what can we learn from them, rather than them learning from us? Orin has, without doubt, taught me incredible lessons and touched the very depth of my soul. He has allowed me to step into my vulnerability, observe my ego and fears. In doing so, I mastered the art of patience, compassion and acceptance which has truly enriched my life in a way I feel would never have happened without Orin. He has moulded me into being the best person I can be and most importantly the best mother I can be. Being the mother of a child with a disability or special needs I can honestly say is a beautiful Gift from God, but one I did not embrace instantly or see in this way. I truly believe children with disabilities open our hearts and allow us to connect to our own vulnerability and in a way we could never have expected or dreamt about.
In fact, having a baby is not about wishing they achieve Grade A results or be fabulously successful and wealthy. It really is about the journey and allowing each and every one of our precious souls to be grounded and live authentically. It is to honour their uniqueness, accept them for who they are and allow them to shine in their own way. It sounds easy but I know it can be challenging. This is why it’s vital that as parents we connect with our children and allow them to choose their own paths and to parent from a loving, conscious way, guiding them on their own unique journey.
This month I have the pleasure to introduce to IW readers a very inspirational boy, Leo Lake. He really is an incredible child and in his five years has achieved such great things, always with such grace and topped off with a cheeky smile, which is adorable and pretty much melts your heart. It’s impossible to meet Leo and not be inspired by him! Even though Leo has to attend hospital many times he really takes it all in his stride and brings a smile to everyone who meets him. Leo, I am also very proud to say, is my friend and is also helping me to translate my childrens book into braille. He really is a very special soul indeed.
Leo it’s really lovely to speak with you today! So can you explain what it feels like to be visually impaired and how it affects your life?
I know that I find it difficult sometimes and I get frustrated and upset but I always manage to get things done or get to where I want to go in the end. I understand that I can’t see like everyone else. I don’t feel different to my friends but I do know I have different colour hair to them. I still can play and have fun.
Do you believe you are special and what do you think makes you special?
Yes I am very special. I know I am and I think that I am one of a kind. I love myself because I am a kind boy. I think that I am very good at listening to people and I have a funny laugh. I love playing with my trains and it makes me happy. I like to go horse riding as I love horses and I feel so happy when I can do it. My favourite thing is going for ice cream with my mummy and I like going to the park and going on trains. I love music and singing. It makes me happy because everyone can sing.
I know you love to horse ride. Can you tell our readers all about the prizes and awards you have won?
Yes I love my pony. I am very brave and everybody tells me how great I am when I ride. I have won many prizes and I like to enter competitions. I want to get better and better. I like animals especially horses they are very special too like me. Horses make me feel happy. I won rosettes for a handy pony competition and I have a Grade 1 certificate for riding and horse care. I am very proud. My mummy says she is very proud of me as I do get tired a lot.
I know you are passionate about music. What does it means to you? Can you tell our readers about when you sang with Danny Donoghue from the Script! That’s pretty amazing!
I love to sing and my mum always sings with me. I like driving in the car singing together. Singing makes me so happy and I like it when I remember the words. Our favourite band is the Script and I sang Hall of Fame with Danny from the Script when I met him. They were all so nice to me. Danny gave me a present. It’s a lovely bracelet and my mummy likes to wear it too. So we share it.
What would you like to do when you are older?
I would like to be a train driver. That would be so cool, but I think that I could do lots of things.
I would also like to introduce Hannah Lake, Leos Mum. Hannah can you explain more about Leo’s disability?
Leo has an eye condition called ‘Leber’s Congenital Amaurosis’ or ‘ LCA’. LCA is caused by a number of different genes, and because of the wonder of gene therapy two of these genes have received treatment through ‘gene therapy’. Doctors have discovered that they can inject a healthy copy of the faulty gene directly into the eye and with that restore a really good amount of usable vision. Leo is affected by the gene ‘Cep290’.
You founded a charity two years ago for Leo called VisKids. Can you tell us about the charity and why you need to raise £250,000 for Leo?
I would love to. The VisKids Foundation was set up to raise vital funds for a treatment for Leo’s eye condition ‘ LCA’ The ‘Cep290’ gene which affects Leo has yet to receive funding for the treatment, hence why we need to raise £250,000. My dream is for Leo to have the operation in 2014 but he needs to have it by the time he is 8 for it to have the maximum effect for his vision. It would be great if Inspired World readers could take a moment to close their eyes and imagine what it would be like to see nothing for 24 hours a day and to try and carry out their daily life seeing nothing, as well as having poor balance and other health issues. That is what Leo experiences daily yet he always smiles. I can only do this with help and if everyone just donated one pound we can achieve our dream so easily. IW readers could also do fundraising themselves for VisKids Foundation. Leo is our vision of hope for the future. I see it so clearly Leo lighting the way for other children to follow.
Hannah how have your views changed on life since you have had Leo?
I never once expected to have a child with disabilities; it just never crossed my mind. Throughout my whole pregnancy I was told that Leo was a perfectly normal healthy baby, so it was really heartbreaking to discover his disability slowly. However, through this experience I met the love of my life, the light and beauty of every day. He has changed me for the better. I have become so much more accepting and open. Leo has enriched my life in more ways than I could have ever imagined and opened me up to life that would have been closed before. I am so grateful now that I have had this experience and for the love and values Leo teaches me.
How does Leo inspire you?
Leo inspires me Daily. He is such a gentle loving boy and is so happy all the time and at peace even though he has to face huge obstacles. He is so inspiring because although every single activity or task is ‘hard work’ for him, he never complains or thinks of himself as a victim. He has huge vision and courage about life and it moves me deeply and keeps me strong and motivated. His strength is my strength. We are a team a wonderful partnership and it humbles me sometimes to be his mum.
What are your dreams for Leo?
My dreams for Leo are of course the same as most mothers wish for their children. My biggest dream is for Leo to have the operation he needs but mostly I would love him to lead a fulfilling and happy life.To experience love and friendship and work like we all do.I would of course also love it if he became a famous musician or Paralympic athlete. That would be incredible as I know he has the strength and drive to achieve anything he wishes and that is something that brings such joy to me. For now though, the next step for us is to continue to strive for stability, to enjoy our family and friends and focus on supporting Leo develop and to be as healthy as possible and raise as much money as we can for VisKids Foundation.
Can you explain to our readers how they can donate money to Viskids or help in any way with the VisKids charity fundraising?
If you would like to donate directly to the research team at UCL please go to www.justgiving.com/VisKidFoundation or please take a look at our website www.viskid.com. To find out more about Leo and the charity go to www.facebook.com/VisKidFoundation. It is also possible to donate a sum of money each month into Viskids Foundation Account if you wish to set up a direct debit. No amount is too small and if everyone just donated a pound it would make a huge difference to Leo.