Lynda Robinson--Handsome Young Man (3)

Connor has had 16 surgeries over the years. He had four eye ops because he had squints in both eyes and his surgeon didn’t know which muscles were responsible for controlling the movement of his eyes. He has had four Botox injections into the left eye as surgery was no longer an option. He has astigmatism so wears glasses. At age 4 he had a hernia and testis- repair done, he went on to have his tonsils out and a few sinus flushes because of the recurring throat and sinuses infections. At age 14 he had to have 7 teeth removed because of overcrowding and because he didn’t want to wear braces. His last surgery was when he was 18, though he hadn’t been well for a long time. He was constantly complaining that his tummy was hurting and he would vomit continually. Many times the GP would fob him off by telling him that he had a bug. He couldn’t stand it any longer and he got very sick, so bad that he had to be taken to hospital by ambulance. He was in hospital put on an IV as he couldn’t hold even a sip of water down. Scans were carried out and they showed that he had an inflamed gallbladder and some stones, but they could not operate until the inflammation and infection had gone. He stayed in hospital for a week and was sent home with strong a pain reliever until his surgery was scheduled. On the 23^rd December 2011 we got a call to say that there was a cancellation for surgery and asked was he able to go in?    

There was a complication with his gallbladder surgery though we were never told exactly what it was but it was worrying to think that something was not right. Connor was allowed home on Christmas Eve but I wasn’t sure that he was ready. He still hadn’t passed any urine and was in an awful lot of pain. Early on Christmas morning he had to be readmitted to have a catheter inserted. His bladder had went into shock and it would take some time to get back to normal so until then he would have to stay in hospital. He wasn’t happy as he didn’t get to have Christmas dinner. It was never easy to watch my baby in so much pain for whatever the reason and Connor has had his fair share of struggles but he has always got there with help and support from all that is involved in his life. He has always got there in his own time.

Connor has checked out ptosis surgery but has decided no more surgery as it involves transplanting bone from his thigh to transplant onto his cheek bones as his are flat. He’s had enough and unless it’s life threatening then wants to be left alone. He still struggles every day but he is my brave soldier, I admire how strong and courageous he has been and I wouldn’t change him for the world.

Connor suffers with so many conditions that affect him on a daily basis. He has contractures of both elbows that seem to be getting worse over time. He has scoliosis in his spine and his muscles in his legs have become so tight that he is in constant pain. He is very sensitive to so many meds that he now has to use a pain patch.  

When I was first told that he wouldn’t see his 1^st Birthday I told myself that I would love him, fight and support him every minute that God blessed me with him. That was 19 years ago. Connor struggled through mainstream school despite the support that I had fought so hard for already being in place. His High school didn’t honour his statement or IEP. Connor was bullied at school so he developed low self-esteem. He has spent years on and off seeing a clinical psychologist and doing CBT. He did have a lot of time off school because of all the hospital, Dr and therapist appointments. When he was 9yrs old things got so bad at his first Primary school that I had no other option but to move him to another primary to continue his education in mainstream school. He came on leaps and bounds, the classes were smaller and the classroom was a closed class which was a lot better, fewer distractions. I wasn’t sure how he would cope at High School but I was determined to make sure that he would get all the help and support that he needed. Despite Connor having dyslexia and Mearse Irlin syndrome, it didn’t stop him though; he passed all of his exams and went on to do Business at college. He has just completed his HNC in Business this year and will graduate at the end of this year.

         Just when we thought Connor was finished being diagnosed he was given a diagnosis of ADHD, Absence Seizures and his gene mutation was identified as NS SOS1 gene. Connor’s health hadn’t been good so we had an appointment again with Dr T the geneticist and he was given another diagnosis of Cardio facio cutaneous (CFC) syndrome. It was like fitting all the pieces of the puzzle together and we began to understand why Connor had all the unusual things wrong with him, but it didn’t matter for me as we had always lived one day at a time. He has taught me so much through the years and I am so proud to be his Mum.

     He has overcome so many obstacles in his life but has always been determined to do and succeed in whatever he puts his mind to. Who would ever have thought that he would defy all odds and achieve so much? I used to worry about his future and what it would hold for him but he is just like any other teenager trying to do what teenagers do and I do believe he has been given life for a reason.

Raising my boys has been a difficult journey and I have got to meet so many lovely people. It has made me appreciate not only our close family but also our extended family.

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