Shooting Star CHASE is the local children’s hospice that literally saved my life. When Moo came home from the hospital for the first time at nine weeks old with a tracheostomy, just before Christmas, she also came with a chest infection and no care package. Here I was with a 9 week old baby that I had tried to have for 5 years and she required 24 hour care. Her airway was utterly blocked and she was fed by naso-gastric (NG) tube. She had had a 6 minute cardiac the day she was born as they tried to intubate her for surgery. Her life depended on my being on the ball. If her trache fell out or got blocked, she would die, quickly. She required feeding every 4 hours, day and night, and would pull out her NG tube. The nurses wouldn’t train me to put one in while I was learning about the trache so we would have to go to hospital and wait around for someone to be free to do it, often in the middle of the night.
My family live abroad so couldn’t help, even though they desperately wanted to. My in laws, some of whom live close by, were too scared of the whole thing. I tried to do it all by myself, as Mr G returned to work after Christmas, because I didn’t have a choice. Every where I asked for help, I got turned away, except for by Shooting Star. I started to have anxiety attacks, became very depressed and went to the darkest places in my mind. Finally, while a couple of the nurses were at my home during a Hospice at Home visit, I was woken with a shock and had one of the worst anxiety attacks of my life and nearly fainted. They took one look at me, called the hospice and had Moo admitted for a two night emergency stay. We ended up living there for three months while they campaigned on our behalf to get us the care package we so desperately needed. They wouldn’t let us go home until we had it in place. I received psychotherapy and was diagnosed as severely traumatised. With medication, time to recover and the support of Mr G and Shooting Star, I returned to my normal self. Without them, I wouldn’t be here now. To this day, they are still the only practical and respite support that we have. No one else is trained to look after Moo, it’s just Mr G and me.
Every year, they hold a Christmas Carol service for the families that they support. Last year, I offered to do a reading. This is what I read:
Hi. My daughter, Moo, has been supported by Shooting Star since she was 9 weeks old and released from hospital. She’s just turned 6. When I volunteered to do a reading, I was very confused about what to choose. Christmas, as well as being a time for thanksgiving, is also a time of reflection for me. So I thought I would share some of our story with you and how life has not turned out quite how I planned. God had other plans for us and He really does know best.
I’ve wanted to be a mother since I was an egg. I have had a blessed life, wonderful friends and family, challenging and fulfilling jobs, foreign adventures but all I’ve ever really wanted was to be a Mummy. I was going to have four children. My husband wanted two. We still needed to discuss that. However, like a lot of people, our path to parenthood was long and traumatic. It took fertility treatment and two years and 11 months to get pregnant the first time. Our son, Ziggy, was stillborn at 5 months. Two years later, after failed fertility treatment, we got pregnant naturally. After yet another traumatic pregnancy, 9 weeks of labour (yes, I am that hard core) and a c-section, our amazing, beautiful daughter, Moo, was born. We were thrown into the world of life threatening conditions, hospitals, hospices and special needs from the moment she arrived. Life was so hard. This was not the parenthood we had envisioned. It took me 18 months to apply for a blue badge because I could not see that Moo was disabled despite having a tracheostomy and pronounced motor delay. She was just my Moo, my beautiful girl. Then I read something that brought me comfort and, bizarrely, peace, which I would like to share with you in a moment.
As for us, we are a very happy family of three with three cats. Life is different for us than most of our friends. Moo continues to face challenges but handles them with such grace and always has that beautiful, joyous smile on her face. She is so strong in spirit and mind, very funny and full of life. She is our inspiration and our joy. Our version of parenthood may be very different and can be very, very hard emotionally but we wouldn’t change a thing. We have gained far more than we have lost. I, personally, have learnt so much. I am far stronger, wiser and more compassionate than before this journey. I have met some truly phenomenal people who I admire so much who dedicate their time to families like ours but, most of all, I am so grateful for the children I have met. The angels on earth, like my Moo, and those who have gone to Heaven. I think of them all the time. All have touched my heart and proven over and over again, that just because you are different, it does not mean that you are less.
Now that reading:
WELCOME TO HOLLAND
By Emily Perl Kingsley
c1987 by Emily Perl Kingsley. 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.