Parents:
Bruford and Antoinette Harvie

Profession:
Linux System Administrator

Neuromovement Practitioner

Age of parents:
36 and 34

Child’s name:
Maxim

Age: Maxim passed away 1 month before his 3rd birthday.

Is this your only child?
Yes.

Diagnosis of child:
Quadriplegic Cerebral Palsy with Severe Dystonia, Scoliosis.
CVI (Cortical Visual Impairment).

What are the biggest challenges facing your child on a daily basis?
Maxim had many challenges, not being able to cry, move easily or even indicate when he was hungry. Maxim’s dystonia was the biggest obstacle that he had to overcome, every minute of the day. It would take over any movement and hijack any intention that he had. For the 1st year of his life, every time that he would want to do something he would get stuck in this repetitive movement and he got very frustrated with this, he was however able to learn to control this better through the ABM NeuroMovement therapy that we did with him.

What are the happiest moments you have with your child on a daily basis?
Every morning, we would bring Maxim to our room and snuggle with him in bed, he would fall asleep right away and just relax in our arms. You could see the comfort on his face. We were told that Maxim would not be able to show emotion, the happiest day of my life was when he smiled when hearing my voice, we waited a long time for that and it finally happened when he was over a year old.

Are you a single parent or married?
Married

Has your special needs child had an effect on your marriage?
Yes most definitely, it tested us in every possible way and then made us stronger together. We learnt to love unconditionally and accept that life has many challenges but together we can overcome everything. We have had to be there for each other in very difficult dark times. Give each other space when needed and be there every second when one of us was not strong enough and falling apart.

What has your child taught you about yourself, both positively and negatively?
Maxim taught us so much, he taught us to never give up, to never stop believing. To care for others around us and love unconditionally. We learnt the hard way, a painful lesson, how things can change in a moment, you can loose those closest to you in a split second. We now focus on what is important to us in life.We have learnt that it is important to be there for others and help make people’s life’s better in whatever way we can.

Are your family and friends supportive?
Our friends and family were amazing. We were supported with everything that we wanted to do for Maxim, financially and emotionally. I can quite honestly say we would not have gotten as far as we did without the help from all the people around us. Now, after Maxim has passed away, they still support us very much, they talk about Maxim often and understand that just because he is no longer here, it does not mean that he is not a huge part of our life.

Do you take time out, if so what do you do to relax?
My parents were very close to Maxim, at least once a week he would visit Ouma and Oupa and sleep over. My husband and I would lake this time to just relax together, go out for dinner, go to a movie or even just stay home and make time for each other.

What has made the biggest difference to your child’s quality of life?
The day we were told that Maxim had suffered severe brain damage due to an infection at birth, was the day we decided we would do anything to help Maxim be the best he can be, we would let him lead us and wouldn’t stop until he showed us he had enough.That is exactly what we did, we fought for Maxim everyday, doing research on what could help him gain functionality and be more comfortable and improve his vision.

If Maxim was not happy doing a certain type of therapy - we would stop that particular therapy or look for a new therapist. We found ABM NeuroMovement when Maxim was 3 Months old and continued to to do this therapy as often as possible, he was always so happy during these sessions, we could see how hard he was trying and actually slowly succeeding. As there were no practitioners in RSA, we had to travel or bring people to RSA to work with our kids. I became a ABM NeuroMovement Practitioner (www.neurogenesis.co.za) in order to work with him daily and now I am able to help other kids through this amazing technique. This is what keeps me going and gives my life meaning now that Maxim is no longer with us.

Your experience is unique in that your child has passed away, what would you like to remind other parents of special needs children?
Having a special needs child is extremely challenging but just as rewarding at the same time. Mourning the loss of the life you thought you would have with your child and the future you dreamed for them is very important, however, I think it is important to move past this and see the beauty of the new life you have with your child because you never know when they can be taken away from you. Enjoy every small gain, be enthusiastic about any change and don’t let the difficult parts about your child’s challenges take over your life. Enjoy every moment you have with your child and love who they are, just do the best you can and what is within your ability, they know that you are trying your best to make life better for them.

My days felt empty and sometimes still do, not being able to take care of my child. But now I fill them with helping other kids and their parents to see how amazing they are and what they can still achieve with the right help and intervention.