Stella Crawford

(Patrice) The biggest challenge was at the start of Ged and Stella’s lives. We didn’t know how to manage all the changes that come with having children, let alone all the changes they were going through. As time goes on and we got to know them as people, we became accustomed to the difficulties and life became natural.

There were the practicalities of managing every day life with very little sleep. We know that is the reality of any parent with any small baby, but with everything else on top of that, it was extra difficult. I think Ged probably did wake up more than other babies. In time, we got used to that, but it took a while.

We just had to take one day at a time and try not to worry about what the next day would bring. Our whole focus was about getting to bed early. You just needed to get some sleep in, because you didn’t know how the night was going to go. Sometimes we would have to take off to the hospital in the middle of the night. We learnt to be prepared.

We felt quite isolated, to begin with, but we did have many people supporting us. The network that connected us to other families made a really big difference. We started meeting other families with similar situations to ours through the Champion Centre. This organization was great in many ways; they provided individualized, professional services to help our children, and through them, we had made many good friends. They became an important part of our support network.

I had a pretty normal pregnancy with Ged, but we found out he had an abnormality in his brain when I went for my 20-week scan.

During his life, he needed a lot of medicine to help relax his muscles and control seizures. Drugs also helped with his digestive system to alleviate reflux symptoms and many other things. He was on antibiotics a lot because he used to get chest infections. It was related to the fact he couldn’t swallow properly, so the food was going into his lungs instead of into his stomach. That is why he ended up with a tube. That made feeding him a lot easier in some ways, but he loved his food so much it was really hard to make that switch. It meant he wasn’t able to enjoy that aspect of his life.

The situation with each of our children was different. With Ged, we did have a lot of support, but there were a lot of unknown factors. For example, we didn’t know what Ged’s life span was going to be. We didn’t know if he was going to live for a day let alone for a year or two.

He was nine years old when he died last year. It was a hard thing to deal with at the time, but he is definitely in a better place and not suffering anymore. Knowing that has brought us a lot of comfort. We obviously miss him, but in some respects, for the longest time, both when he was born and before he was born, knowing that one day he was going to die was like a big cloud hanging over us. When it finally happened it was a relief. It is hard living under that cloud, but we knew that we had to make the most of each day and to enjoy every little success life would bring.

We were really worried about how Stella was going to cope with Ged’s passing, and I was quite concerned about what we were going to say to her and how she could react. I didn’t need to worry, she managed fairly well with it. I think her being part of the process helped with the grieving. She was sad naturally, but we explained to her that Ged had gone to heaven. She asked us where heaven was, so we had lots of interesting conversations about that. I’m not sure she really grasped that – it is quite a difficult concept to grasp for anyone.

When expecting Stella I was quite sick early on in the pregnancy. I ended up having a scan at 12 weeks and they found Stella had quite a thickened translucency, which is one of the markers for Down syndrome. So we ended up having a one in two chance that she would have Downs Syndrome. The news was quite hard to take.

Stella has got an incredible amount of energy. It is hard to keep up with her and keep her entertained. She keeps us fit. We have had issues with her behavior like running away and her very trusting nature makes her quite vulnerable. I guess that is an on-going thing that we have to try and monitor without been overprotective.

There are lots of very positive things about Stella’s development. If you start right back at the beginning, she was eating on her own when she was nine months old, so that was quite a success, really. She is a very social person. I love the fact that she is so sociable, because I have ended up meeting a lot of people and having all these funny little encounters. You can’t always predict how the conversation is going to go. It is always very entertaining.

(Graeme) When we went to Orana Park today I had to call into Blacks. They sell nuts and bolts etc. A girl served me and I told her what I wanted. Stella was there and she said, ‘What’s your name?’ And it all just started from there, until we couldn’t get out of the place. She also met two engineers there. Stella wanted them to do some sort of yoga, so they did. All that is sort of normal when you go out with her. Wherever we go, we meet a lot of people. We have a great time together.

(Patrice) When I meet someone that has just had a child with special needs, my advice to them is to accept what they have got and give themselves time to know their little person. It is something to celebrate. I guess when you get a diagnosis, whether it be a diagnosis like Ged’s or like Stella’s, it is quite overwhelming and not what you are expecting. Just like Graeme said, embrace what you have and try to realize that there is a whole other world out there.

Although it is really different than what you have known, and what you might have expected, there are a lot of really amazing things that life can offer you when you have a child with special needs. You might have to adapt to do things differently, but there always will be successes to celebrate. You meet a lot of new people in the same situation and create friends for life. I think you learn a lot more about yourself than you might otherwise.

Graeme & Patrice Crawford