Charlie’s JourneyWritten by Beverley Willis on Jan 27, 2016 in blog - 5 Comments Print This Post
By Penny Egan.
I was pregnant with my first child and at my 20 week scan the bottom fell out of my world; the doctors told us our baby was missing his right arm and lower forearm.
Further investigation showed that the umbilical cord was missing a blood vessel. Due to the rare nature of these two abnormalities the doctors were concerned that they were an indication of further problems – including scenarios that meant the baby wouldn’t make it to term or could die a few weeks after birth.
We decided to go ahead and have an amniocentesis to rule out as many conditions as possible (there were 200+ possibilities). After two long weeks the test results came back clear. We were told that as far as they could tell the baby would be fine apart from his arm/hand, but they couldn’t be 100% sure and were unable to give us the all-clear until the baby was born.
The remainder of the pregnancy passed very slowly.
It was a time of great worry and a time of great prayer. I longed for Sundays; to be at church, to be closer to God, I knew he was my only hope and I clung to that and to him. I was given a word that the Lord had construction barriers around my tummy, ‘work in progress’ so to speak, and one to say that the baby would be a blessing to all. I took comfort in these and tried to find some peace knowing God was in control.
In some ways this time was more difficult being a Christian; non-Christians in our situation use the time to grieve their ‘normal’ baby and adjust their views and expectations of what their life will be like. I felt torn, I wanted to do this but I wanted to have faith that with prayer this baby would be born with two hands.
After a traumatic labour Charlie arrived and I was unspeakably grateful just to have him here safely, but in some ways I knew the battle had just begun.
Like any mother I wanted to protect and do the very best for my child. I set about making sure I was aware of any aids or innovations that would ‘help’ Charlie, I very quickly realised that these were completely unnecessary as Charlie managed just fine and more often than not met his milestones before his friends.
The first couple of years were tough; dealing with the stares and inappropriate comments and questions wasn’t easy. Some days I would welcome the questions and felt the need to educate the world (the more people I educated the less Charlie would have to deal with). On other days I just wanted to be another anonymous mum taking her toddler to the park without being harassed.
By the time Charlie was three I had grown strong and wanted to help others through these first tough years – this was when I started the ‘Charlie’s Little Arm’ Facebook page. Charlie and I started to make videos demonstrating how Charlie could manage tasks that were tricky. I posted about our everyday experiences and how we dealt with difficult ones, about prosthetics, clothing alteration and any useful aids I came across; anything that I thought would be a help to other parents of little armers.
It was good to be giving back and I felt that in some ways God gave me Charlie in order to help others and as he had promised ‘to be a blessing to all’.
It wasn’t until a couple of years after having Charlie during a guest speech at LCC I realised that I was angry at God. I was angry that he had let this happen to my baby and angry that my labour experience was so unnecessarily horrible. This was a bit of a revelation!
I hadn’t realised I was angry and then I understood that it was actually okay to be angry with God. Over time I worked on this, made my peace and moved on.
Charlie is now 6 and heading up a large band of superheroes at school. When he grows up he plans to save the world in his capacity as a professional Ninja. He’s doing okay. He has the Lord on his side; he has strength, confidence and is resilient. His journey may not be as straightforward or as easy as others’ but I have no doubt that as a man of God (and a Ninja of course…..) he is going to achieve great things.