“ I thought I would have to teach my child about the world. Turns out I have to teach the world about my son. They see a child who cannot speak, I see a miracle that does not need words.”
There is a world that we all know and are familiar with, the world of perfection and normality and there is our world. Our world is filled with imperfection and heartache, it is filled with children with disabilities and abnormalities, it is filled with doctors, therapists, hospitals and medication, it is filled with love, affection and understanding, and with anger, guilt and pain. We never asked to be thrown into this world, it just happened that way but looking back now, we would not change a thing.
Gabriel was born in February 2002. He was born with a cleft lip and after that he was diagnosed with Lobar Holoprosencephaly, partial Agenesis of the Corpus Collosum, Craniostynosis, Microcephaly, Absence Seizures and Diabetes Insipidus (water diabetes not sugar). We were devastated. It felt like our whole world had fallen to pieces. We were told Gabriel may never walk and may never amount to anything. We decided then and there that we were going to fight for our son's to quality of life and give him every opportunity in his life to help him achieve his full potential. And so our journey began…not knowing what the future would hold for our son... a rollercoaster of emotions... fear, pain, grief, sadness, guilt, blame, anger, hate, pity and then finally we found ourselves with acceptance and happiness.
Gabriel started therapy when he was 9 months old and we incorporate his therapy into his daily routines and it has become a part of our natural lives. He attends occupational therapy, physiotherapy, speech therapy and horse riding. Gabriel achieved all his milestones at the correct age until he was 6 months old and after that he started to show severe developmental delays. Gabriel now goes to a wonderful special needs school in the mornings where he is thriving and is learning independence. He is currently assessed at about 10-14 months cognitively but we have learned to appreciate things that he can do, and not to look at the things he cannot.
Gabriel crawled at 12 months and walked at 20 months on his own. He is a very active curious child and has a strong will and determination that helps him to succeed. He loves to jump, play and sing. He has mastered walking up and down stairs on his own, can switch his electronic toys on and off, turn pages in books, chooses which toys to play with plus lots more. He is non-verbal and cannot sign but manages to communicate most of his needs with his eyes or body movements. He started eating solids at 3 ½ years old and now loves to eat all foods. He has very little concept of danger and needs to cared for and watched at all times. Sleep is not a word in our household but after so many years, we seem to have gotten use to the lack of sleep. We have adjusted our lives around the needs of Gabriel and this is our life. We know no other life and we have known no better.
It has not been an easy road and we know that we have a lot of challenges ahead of us. But part of the healing process is acceptance and an understanding that every child is unique in their own way. The fact that our child will never leave home, will never go to a university, read or write, or ever get married is part of accepting, it is part of loving your child unconditionally and is part of the realization that Gabriel is perfect in our eyes and in God's eyes. It is the understanding that miracles do happen. That everything a child does is a miracle, every movement, every breath. It is part of appreciating life for what it is, for what it gives you and is part of changing priorities and seeing beyond what society dictates as normal. It is opening your eyes to see one of God's angels lying in your arms, smiling at his parents with his big blue eyes and blonde curls. Gabriel is GREAT teacher without knowing, and makes people realize what they actually have and to be grateful for just that!
Gabriel has an aura around him, an energy that draws people to him, an energy that makes every person smile in his presence, and an energy that makes everything around him radiate with sunshine. Gabriel brings us an overwhelming joy and our biggest motivation to keep going is his constant smile and laughter.In 2008, Gabriel became big brother to Jaden after a long battle and he is now a normal and healthy toddler who loves his brother. Although Jaden has overtaken Gabriel in cognitive development, the two play together and enjoy each other’s company. My children have been my inspiration, and through the long sleepless nights and the stressful times when Gabriel is sick, I am still so grateful for every day that we have with him.
Living with Gabriel has become OUR way of life, no books, no instructions, the medical text books all say that kids with HPE mostly die or are "vegetables", BUT with only an overseas support group with an unbelievable bunch of HPE moms to guide and advise us along our journey which has been our saving grace . At least our medical team listens to us, and asks US what to do in some cases with Gabriel and even takes the advice of the support group, as it is us moms that know better about daily life with HPE than the specialists.We have learnt that Gabriel is not his diagnosis and we try not to focus on it too much. Gabriel is Gabriel, and that is pure innocent love. It doesn’t matter what Gabriel can’t do. What matters is that we have been given this special child and that he has a happy and content life. It is as simple as that...