SPECIALparent

When our first child (J1) was born back in 1992, like all babies she was beautiful.  Big eyes, porcelain skin, soft wispy hair.  Five months later we were in the children’s hospital with her, having scans.  We were told she had a huge inoperable, untreatable brain tumour and was given 2-6 months to live.  Needless to say, our world changed overnight. 

We were thrust into “limbo land” waiting for our daughter to die.  We took photos, spent all of our available time with her, made memories.  But she didn’t die.

The tumour didn’t grow rapidly as the doctors had predicted.  Instead, this huge, slow-growing tumour and the resulting fluid, caused enormous, permanent damage.  Our daughter was left severely intellectually and physically disabled.  Unable to walk or talk, with limited eyesight and understanding, she relied on us for the next 12 years of her life to meet all of her needs.  She had many ups and downs with her health, and often we had to go back to living in limbo, wondering if this was the year she would die.  We are so thankful in many ways that she didn’t die when the doctors predicted – we had a chance to get to know her.  But at a high cost!

In 1994 we had a son (J2).  Again, a beautiful baby.  I had no concerns, the pregnancy had gone well, and there was no chance he would have the same problems as his older sister.  But from the start he didn’t meet milestones.  Many tests later, the doctors had to admit that although they didn’t know why, J2 appeared to be severely developmentally delayed.  They couldn’t find any genetic links between the disabilities of the siblings.  It was just one of those things.  As J2 got older, his disability became more and more pronounced.  He was miles behind his peers.  Now, aged 13, he is unable to talk, in nappies, unable to independently feed himself, and has the mental reasoning of a 9 month old.

In 2005, just months after J1 had died, we made a brave decision.  We would have another baby.  Because there was no diagnosis for J2, we had no guarantee that a third child wouldn’t present with the same problems.  But I had a strong conviction that God wanted us to go ahead and that it was part of His plan for our lives.  The pregnancy was going well until at 26 weeks my waters broke.  I spent the next stressful 4 weeks in hospital thinking and expecting the worst.  After all, our track record wasn’t good, and having a prem baby just added more potential problems to the mix.  At 30 weeks our third child (J3) came into the world weighing in at 1460grams.  She wasn’t beautiful like the others.  She was tiny, wrinkly, all arms and legs.  But she was ours, and we loved her no matter what the future held.  It wasn’t until months later that we could begin to hope all was well.  She smiled at the right time, crawled at the right time, and by the time she began to walk I was convinced.  Finally we had a “normal” child.

Much of what I am going to post in the future will in some way be related to our past and current experiences with disability.