by Janet Legemaate

I am often asked “how do you cope?”  I realised when thinking about this question that there are so many reasons for how we do cope with the situation we find ourselves in.  I am also so aware that no matter how hard a situation is for our family that there is always someone who is experiencing something harder. I also often look back over the last 18 years and think that we as a family know no different, this is our experience.

What has become apparent is that our journey has cycles where we go through so many emotions and have to deal with them to be able to carry on. I can perhaps equate this to the 4 stages of loss, those of denial (total disbelief that this has occurred and occurred again in the event of our second son’s birth), depression (this has reared its ugly head a number of times over the last 18 years), anger (anger at everyone around us, when they don’t see we are battling emotionally, need support or just need a shoulder to cry on and mistakenly also anger at God) and acceptance (acceptance that we have the most beautiful boys, that the joy they give us surpasses anything else and that they will achieve their fullest potential).

Our journey started 18 years ago when our eldest son was born with a congenital heart defect, Tetralogy of Fallots and Pulmonary Atresia. We were expecting to have a beautiful, perfect little boy and within minutes of his birth that changed when he became severely cyanosed (blue). Of all the emotions we have experienced over the years I can remember the utter devastation we felt at the possibility of losing him. Falling pregnant had been a miracle in itself for us so the thought of losing Matthew was just too much.

Within 36 hours, he was airlifted to Johannesburg, and was having his first open heart surgery which was simply to try and keep him alive. The next seven weeks were what I believe have shaped how we have chosen to deal with the situation. We often sat simply looking at each other as the hospital became our home from 6am to 9pm each day. Matthew went back to surgery 5 times in that first week and it was during these many hours and the constant “he is going to make it”, “he isn’t going to make it” reports that we decided that for as long as he lives our son would live his life to the fullest.

There have always been the medical issues to consider and later it became apparent that Matthew had a central auditory processing disorder and was severely dyslexic. Which meant that schooling was going to be an issue too and despite being exceptionally bright he has always battled to learn in a conventional manner.

We made a decision early on to help him live life to the fullest, make memories together and not live with regret.  Now 18 years, 5 open heart surgeries and 5 years on the transplant list waiting for a heart and bi-lateral lung transplant Matthew is a contented, happy young man who looks at life as something with open ended possibilities. He dreams of a future that he will make special, of ticking items off his bucket list and of making a difference. He knows his limitations, fights them daily and has a determination I have seldom seen in youngsters his age.

How has this all affected the family? For one thing we are very close and we tackle each obstacle together. The birth of Matthew’s brother 8 years after Matthew, with a potentially life-threatening syndrome rounded off our little family and in many ways helped shape Matthew to become who he is today.  As a family we purpose to be positive and look for opportunities to bless others outside of the home. We take every negative occurrence and try hard to make it a positive one.

So how do we cope? We cope because our spiritual beliefs have always been at the centre of our lives. We cope because as a couple we believe each boy is a gift to be cherished, educated as best we can, guided to become the best they possibly can be and loved unconditionally. We cope because we decided early on that “Life is a Gift” and is worth living well. We cope because we try to tackle each setback as just another hurdle to navigate. Has it been easy? Never, but it surely has been worth it!

About the author

Although presently a stay at home mom and carer to her two sons, Janet Legemaate is an educator and past school principal with a Bachelor of Primary Education degree and a Bachelor of Education Honours degree. Her spare time is spent volunteering for the Organ Donor Foundation of South Africa and raising awareness about both Organ Donation and Prader-Willi Syndrome.

Shared from ICPCN ~ International Children’s Palliative Care Network 

Website www.icpcn.org

The ICPCN‘s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.

The ICPCN is administered from within South Africa.
Cluster Box 3050, Assagay, 3624, South Africa.
Telephone: +27 (0)82 897 4420

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Originally published on 7th May 2016