Well Jack, today is the big day!! You are now legally an adult. It feels as though I have blinked and you are all grown up- how did that happen?
When the midwife handed you to me I fell in love with you instantly, you were a perfect 8lb 9.5 oz ( ouch) bundle with a mop of blonde hair and beautiful blue eyes. Your Daddy and I spent hours staring at you and making plans for your future. You would be the chairman of ICI ( young people may need to google that ) or a Nobel prize winning Doctor, I mean your parents were both university graduates so there was no way you weren’t going to be a genius. You would be a superhero and change the world. Right?
It became very obvious very quickly that all was not well, you would refuse to feed and literally scream for hours. You didn’t sleep either ( that’s a blog post all of its own) and your development was so much slower than other babies of the same age. Soon your thoroughly exhausted parents were hearing words like ” assessment” and ” developmentally delayed” we had endless appointments and therapies , blood draws and examinations. At every one of these I had to fight the urge to pick you up and run out of the clinic. Medical professionals used terms to describe you that were alien to me,but I looked at you and saw my perfect baby .
As the years went by life was bloody hard, I cried endless tears of frustration and heartbreak, I went through a huge ” why me?” Stage . My weight ballooned and my hair started to fall out. Yet one winning smile from you would melt my heart and make me more determined to fight for you. I became a medical expert really quickly, I learned a new language both figuratively and literally as I learned to sign to you and taught you to sign to me. Of course I didn’t need a sign to tell me what you needed as I listened to you with my heart , and the rest? I just knew instinctively.
When we received the diagnosis of Smith Lemli Opitz Syndrome at the age of 7 I felt a huge sense of relief, at last we had a name for it. I mean you already had a whole list of diagnoses like a severe learning disability, autism, feeding difficulties and so on but now we knew why. I found the SLOS family community and never looked back.
People sometimes ask me if I wish you and Lucy didn’t have SLOS, I’ve spent hours thinking about this and of course I don’t want you to struggle but SLOS is a huge part of who you are. I can’t imagine you and lucy without it. It’s also changed my life completely. It’s taught me compassion and humility that I didn’t think possible. It’s taught me to let the small things go, yes our house constantly looks as though it has been burgled but that’s ok. It brought us a wonderful person named Ian, it’s brought me into a community of families who amaze and inspire me everyday, it’s shown me who our real friends and family are. It’s brought us new friendships and really made us a part of the community. It’s taken me to a job that I love. We have support workers who are a part of our family and prop us up when we struggle to cope( you’ve become a part of their families too)
Jack, you are a joy to everyone you meet. I seriously don’t know another person who is as popular as you are, nearly everyone in Port Talbot knows you and to be in your presence is to be in the presence of pure love as you don’t hate anyone, everyone is greeted with a kiss and a bear hug ( ok sometimes a head lock) and people always walk away feeling happier for having seen you.
So my baby boy , you may not be the chair of ICI ( they went to the wall anyway) but you have most certainly changed lives. We , your family and friends couldn’t be prouder of you or love you anymore .
Happy Birthday Jackie Chan xx
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The ugly side of SLOS
Living the dream
The ugly side of SLOS
Living the dream
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