Parents:
Neal and Terry Sundstrom
Profession:
Film Director
Anat Baniel Practitioner
Age of parents:
54 and 44
Child’s name:
Paige Emily
Age: 3,5 years
Is this your only child?
Yes.
Diagnosis of child:
Spastic Quadriplegic Cerebral Palsy
Cortical Visual Impairment
What are the biggest challenges facing your child on a daily basis?
When Paige was a baby she would cry for hours on end. I could not believe that such a small being (she only weighed 2 kgs) could keep up such sustained crying. I knew that she could not see clearly and it seemed to me that she was constantly in a confused and frightened state. Of course we just loved her through this and fast forward to today and she is truly one of the happiest kids anyone has met with a quick smile and an infectious laugh.
• She is unable to move easily so she cannot sit unassisted or crawl or stand or feed herself.
• She is unable to see clearly and so does not really initiate play with toys.
• She is unable to talk but this does not prevent her from making her feelings known.
I don’t look at Paige as a 3 or 4 year old but rather as a unique younger being. This way I don’t ever make comparisons with other children and this helps to not focus on the ‘Can’ts’ but rather enjoy the ‘Cans”.
What are the happiest moments you have with your child on a daily basis?
Everytime she giggles. She has such a joyous infectious laugh that is so easily elicited. I have often said that god has gifted me with a cuddly, loving baby longer than most people. Paige’s favourite thing to do is to just cuddle with us whether it is watching tv with dad in the evenings or having our special quiet time before bed. She is happy to quietly snuggle.
Are you a single parent or married?
Married
Has your special needs child had an effect on your marriage?
I think it has made our bond tighter. Having a premature baby and then a special needs child is a trauma that can certainly make or break a relationship and we feel fortunate that it has indeed made our marriage and our friendship stronger. There is no more room - or energy – for pettiness. We do both wish that we got to spend more time together as a couple but I am sure that all new parents feel this way.
What has your child taught you about yourself, both positively and negatively?
I have found a strength that I did not know I possessed. I will no longer allow myself to be bullied by doctors, therapist or anyone at all when it comes to my child’s care.
My husband and I have had quite different emotional responses to this journey so perhaps we even each other out.
I do not feel sorry for myself. I do not say ‘why me’ or ‘woe is me’. I understand that we are on a journey that is atypical and I have managed to embrace that – so long as I stay in the present. If I allow myself to project into the future then I start to fear – for Paige – I start to worry about her quality of life, whether she will feel sorry for herself or feel angry or hard done by. Whether she will be able to communicate with people around her, whether she will find love, whether she will experience frustration with her limitations. I then get sad that she may never play golf, or snow ski or run trails – all the things I so love to do. When I fall into this future fear I have to slowly talk myself down and back into today... and how happy she is today... and how loved she is today... and then things feel sunny again.
Are your family and friends supportive?
I absolutely cannot imagine taking this journey without the incredible support from our families. Both time wise and financially I don’t thing we would have coped. Raising a special needs child is financially draining and exhausting and they give us both time outs and help with some of her medical therapies without ever making us feel that we are a burden. They love her deeply and unconditionally.
I have found my friends to be very supportive but my husband has felt different. He feels that the majority of his friends have moved away from him and he thinks this is because they do not know how to deal with his new circumstances.
Do you take time out, if so what do you do to relax?
We try to. We used to get a baby sitter every Tuesday and Thursday night just so that we could have some ‘us’ time. Even if it meant sitting in front of the TV and watching nonsense. I love to travel and having the wonderfully supportive family that we do we have been able to take baby-free holidays.
What has made the biggest difference to your child’s quality of life?
I believe that as she got a bit older and felt the absolute love that surrounded her all the time she eventually grew less fearful of the world. She now very rarely cries and usually only if she hurts herself or is sick.
When she was 9 months old I took her to the USA to see Anat Baniel as I had heard about the Anat Baniel Method and the principles of it really resonated with me. I was so amazed at the wonderful changes in Paige both big and small that I just knew that this was the way I wanted to go with regards her treatment. So much so, that I decided to start training to become a practitioner myself as there was no one available in South Africa. This was a huge departure from my life as a Film Producer. It took almost 3 years of travel to the USA but I am now qualified and using this technique to continue making huge differences in Paige’s life and also the life of other special needs children (neurogenesis.co.za). I thank Paige for putting me on this path every day!
What is your dream for your child?
I have big dreams and little dreams for her. Practical and impractical. I would so love for her to be able to talk and communicate, for her to be able to move comfortably and be self ambulatory, to be able to truly appreciate the world around her. But most of all I hope that she is always surrounded by love and that she always feels that love. I dream that she is comfortable in herself, whatever that self is capable of doing, and that she remains so joyous and happy.
