July 2014 – A fabulous update

The Ellis Family Story (video)

It was September 2006 and we had checked into the hospital in Bangkok late at night and I was going to be induced. It didn’t happen as they thought labour had started after being 11 days overdue. We were receiving text messages asking if we were ok. There was a military coup happening, but we had bigger things on our minds.

The next morning arrived and still no signs of my little one wanting to meet us, so the induction started. Giving birth for me was my biggest fear in life, and I had finally got to the moment where it was going to happen. I still remember the second my little boy met my husband and I for the first time. I looked around the room intently and didn’t make a sound. He was taken to be cleaned and the crying started, a heart wrenching cry that was different to other babies. It was days later when the Dr told us that she wanted to rule out Cri du Chat (Cat’s Cry Syndrome) and that we weren’t to worry or research it, just wait for the results.

It was the longest two weeks in my life. I couldn’t help myself, I had to look it up on the internet. I am afraid there is a lot of information out there, and the first thing I read was that most babies die in infancy. I believe now that this is outdated information.

We stayed in hospital for 6 days as Harvey had related heart defects. He needed monitoring but was ok. My mother joined us in Phuket to help with little Harvey. My husband arrived home during the day which I thought was unusual. He knelt down and told me that our son did indeed have Cri du Chat. My fear of labour paled in comparison, and my new fear had just come true. I was devastated. I didn’t know what to do. I had so many thoughts and feelings running through my head. I was mourning for the child I would never have. I cried all day and night for a very long time. My mother reassured me that I would look back on this time and be surprised at how upset I was.

Having a child with a disability is both a happy and sad time. I was processing different thoughts in my head about how Harvey, Lyndon and I would manage in life. How would my friends accept Harvey? How would strangers treat him? I have to say though, that I have been overwhelmed with the amount of support and encouraging words I have received from my friends and family.

Harvey charms anyone who meets him, strangers included! Harvey has already taught me valuable lessons in life. The ability to love unconditionally and how I should accept people for who they are. It has been a humbling experience. I thought I had his life mapped out. How arrogant of me. I now realise that the parenting experience is all about ensuring your child is loved, cherished and safe. To ensure they can achieve all that they can in life and to reach their goals, even if these goals differ from the majority of the population.

I am honored to be Harvey’s mother and I am proud with what he has achieved so far in life. I initially felt cheated, but now I can see that I am having a fulfilling experience as a mother and parent, just like anyone else. I love the feeling of his soft skin, the way he gazes into your eyes when you are feeding him, the noises he makes in your ear, and how he is so snuggly when you feed him at 3am. I love how you can light up his life just by looking at him and how he is comforted by me when upset. Harvey makes me laugh and smile everyday. He is my angel. He has beaten the odds with his ability to feed. He is now on solids and gobbles his food down. He gets quite impatient if you don’t keep it coming.

So far Harvey is just like any other baby, and it is hard not knowing what will happen in the future. When will his intellectual disability become apparent? Will he have health problems? Will he ever be able to tell me he loves me? What will happen when we are gone? Will he be treated well? Would strangers still approach and say my son is beautiful if they knew he had a disability?

Right now I am enjoying the present and relish the moments that Harvey does something new. He loves to roll around and explore with his hands and feet. He smiles with every mouthful of potato. He wakes up happy and with one smile from him, all your worries melt at that moment. I am coming to terms with the fact that I have a child with a disability. Some advice I was given recently was to never ask why, because you will never get an answer. I have enjoyed many adventures in life and this is just a new one.
Jo (Harvey’s mother)

Update March 2009

Harvey is nearly two and a half and boy has he grown. He is an absolute delight and a joy to look after. He has been settling himself to sleep for well over a year now. He eats everything you give him and has a great appetite. His chewing ability has improved. He gives himself a drink with a sippy cup and feeds himself morning and afternoon tea. He is learning to use his spoon and fork. He can sit up all by himself, and has been commando crawling for a long time, but the big news is ÖÖ..he can now crawl on all fours! He can also pull himself to standing. In the last two weeks he has met some major milestones. He can also talk!! I am so proud of him. He can say “mama” and “woof woof” and “baba”. He also uses Makaton sign and can sign eleven signs. The only food sign he knows is biscuit, so the day he figured that one out, he got a biscuit every time he asked for one. You could imagine how delighted he was to have biscuits for breakfast!! He knows where all of his body parts are, including the freckle on his tummy. He loves bathtime, and storytime. He chooses the story he wants but pulling himself up and reaching to touch the book. He is quite selective. He will then sit down and turn the pages and sign all the things he knows. He makes a great piggy “oink” when he sees a pig.

Harvey understands everything. He is quite creative with the limited signs he knows. He signed to me the other day that I had “hairy eyes”. Hairy eyes I thought? Oh yes, he was talking about my eyelashes! We are working on ways to assist his communication as he wants to say so much more but doesn’t know how.

Harvey’s health is good. We have almost eliminated reflux through the removal of dairy in his diet. I think that being upright has helped too. He is getting his eye patched at the moment, but in true Harvey spirit he copes with it. Harvey has the sweetest nature and is a happy boy who loves life.

On a personal note, I feel I have come to terms with Harvey’s condition. It is a process that you have to let happen and it takes time. I am sad to say that I am now a single parent, and I have moved from Thailand to my home town in New Zealand. The last year has been spent setting up Harvey’s therapies and specialists. He goes to riding, swimming, music and today he started childcare.

I would like to address some of the concerns that I had from my first submission. I am happy to say that my friends have accepted Harvey. It is a learning experience for all of us and Harvey is teaching us so many things. Strangers adore Harvey. I did worry about this when I first had Harvey’s diagnosis, but I believe that being open and approachable has really helped. If you freely discuss Harvey’s condition with people, it breaks down barriers and puts people at ease. If they see how open and positive you are, then they often reciprocate and will ask questions. I have found that when people are more knowledgeable, it reduces the likelihood of inappropriate comments. We have met some amazing people. Some of my questions remain unanswered, but I have learnt to enjoy each day and understand that the future is the future and nobody really knows what that holds.

I also wondered if Harvey would ever say he loved me. My goodness, even though he doesn’t say the sentence, he says it in so many ways. Big kisses, and cuddles, when he says mama, and just the way he gets excited to see me. I am so proud of Harvey. He is still my angel.

Update 13th March 2009

Today Harvey mastered drinking from a straw. What a star!

Update 26th June 2009

Harvey really loves going to daycare. He has many friends there, but he has a very special friend called Hakaraia. The photo is of the two of them waiting for a story at mat-time. Hakaraia is a really special boy who lights up the room when he enters it. He makes a big effort to say hello to his friends and teachers. Harvey thinks Hakaraia is great and will sign ‘more’ if he goes away from him. Hakaraia has the ability to make Harvey laugh when he is feeling sad. We are so happy that he is in Harvey’s life. Hakaraia shows everyone how to say things in Makaton and how to communicate with Harvey.