The bitter sweet reality of birthdays and missed milestones...
It's almost 17 years since I went in to labour with our beautiful baby boy and as always on a birthday we think about the years gone by and the milestones coming up. The reality is that George is supported by Shooting Star Children's Hospices because he has a life limiting/life threatening condition and there have been times in hospital when we were petrified that we were losing him. We really are so proud of our very brave almost 17 year old. He has been pricked, prodded and put through more tests that most people will have to face in their lifetime. He hates his epilepsy and what it has taken from him so far and what it continues to take from him....
Whilst celebrating wonderful birthdays, we have also grieved the loss of milestones. At 17 most children can learn to drive. George has been obsessed with driving since a young age, learning the highway code, loving the meaning of road signs and becoming the worst backseat driver around! It was his motivation to be stable enough to drive that pushed him through multiple surgeries last year, longing for a cure, but ultimately making the lack of a cure even more devastating. We hold out a hope for self driving cars one day.... or of course that elusive operation, drug, or event that will stabilise him!
We have watched several milestones pass by as his old-peers celebrate - GCSEs and prom last year being the most significant recently. Next year they head off to university or work and then on to independence, children and more. We have no idea of what the next stage is for George and thankfully Shooting Star has given me the opportunity to discuss this at length in therapy. I am scared about George's future and I'm sure most parents of special needs children have the same fears... I'm scared of losing him and I'm also scared of leaving him without support... I know we just have to keep taking it day by day and I'm so thankful that Shooting Star has given George such an amazing childhood despite the odds.
Each birthday celebration is a wonderful reminder of what he has survived, but also another of what he has lost... Below is a poem that was read to me early on as I started to realise that life wasn't going to be as we hoped/planned and that we had to find a new way forward for George.
Happy Birthday my gorgeous boy - we are all so proud of you and we are determined that you will continue to have the best life possible. xxx
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.