Jen Crossley: Love and Family

I have thought about what makes me most grateful in this life, and it is the love of a good man and the love of my family.

I'm grateful every day for the health of my family.  My son Matthew was born with Cystic Fibrosis, a genetic chronic illness.  At the time he was diagnosed I was totally devastated.  Our lives were turned upside-down.  After having one healthy child I would never have dreamed I would have one with a chronic illness. 

Now nearly 19 years on, I look at him and I'm grateful every day for him being in our lives. He told me once, "Don't worry mum - I'm fine."  When we were down in the Hospital he looked at the other children and said, "I’m good compared to some of these kids," and that has been his motto.  He is now at Uni and doing so well, and it makes me so proud. He is living his life. 

I’m so grateful that my children are so close to one another.  Nicole is 21 and has always been a second mum to Matthew, worrying about her brother’s health and sometimes having to be second to a sibling with a chronic illness. Last year she had some bad health issues, but finally there is a light at the end of a dark tunnel for her.  She has become a beautiful young woman and is finally starting to live her life as well. 

Some people might read this and say, "Boy - how can you be grateful?"  Well I am. There are people far worse off, and I make the most of each day with the love of my family.  Their encouragement for me is to live my life as an artist finally, and for that I am a lucky woman . 

Just remember to be grateful for what you have, and not for what you haven’t got. 

I want to leave you with this poem someone gave to me when I first heard about Matthew’s illness.  It still makes me cry.

Emily Perl Kingsley. 

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.
You can learn more about Jen Crossley on her blog, A Mark In Time


mairedodd said...

life is a gift... and what we make of it, our tribute... you are raising your kids with the right awareness of that... we get dealt different hands of cards - and some of very difficult - but we must play them as well as we can... you are a beautiful family...

Judy said...

Such a beautiful story...and an amazing poem. I have a feeling that your son is even more amazing...a special gift. We are all handed gifts that are not what we expected it is how we deal with them is what matters.

Jen Crossley said...

Thank you everyone for your kind comments I really appreciate them more than you know

Xanapan said...

Jen these are beautiful words and you have a wonderful family. Thank you for sharing and reminding all of us to be grateful for what each of us have. Christina x

Riki Schumacher said...

Oh Jen, what a wonderful post. It is so true, you can only be grateful for the small things, and that we get one more day with our loved ones. What a wonderful mum you are, they are so lucky to have you and the support you get from each other. I've been to Italy, it doesn't compare with the love of a child, that's a lifetime of love and learning. But you know that! xoxo Riki