Would it surprise you to hear that our lives are very happy, full of laughter and fun?
While its no secret that special needs parents grieve for the child they thought they had, I’m not sure the rest of the parenting world understands the joy that coexists with that grief.
When we found out about Sams disabilities, we mourned the loss of the life we’d planned with our son.
Almost 8 years on, that grief is still there.
But it is shadowed by the love and pride we have for our amazing, strong willed little boy.
Let me tell you a secret; grief and love aren’t so different. As a SN parent the highs are exhilarating but the lows are crucifying.
I will never forget seeing my son use a power wheelchair for the first time with tears pouring down my face, totally unaware that I was crying.
The joy we felt that day was out of this world. THAT'S the kind of high I’m talking about.
But the lows are utterly brutal; the despair and helplessness you feel sitting by your child’s hospital bed, begging God for the seizures to just stop, the Consultant gently explaining that we won’t know what damage this latest episode has done for some time.
I would do anything to trade places with my son in that moment.
To offer my life, for his.
If all you ever see and hear about are the lows, you would be forgiven for struggling to see the joy in our lives.
Believe me, these kids are superheroes. Their courage wears off on you, and their determination to live and their love of life is infectious.
They teach you what really matters; reading a bedtime story together, snuggling on the sofa watching TV, reading their school progress reports with so much pride you think your heart will burst.
We’re really no different to other families, we just have a few added extras.