Where do I begin...

It's been a long time since I have updated this.I have been so busy getting Hunter connected with the right therapists, doctors, and learning my way through the Arizona Early Intervention system. The system is so much different than Michigan and what I'm used too. It's fair to say that I've had my hands full. But, I think that I'm starting to get the hang of it and Hunter has started to see the right therapists and doctors here.

Hunter is doing great without oxygen. He hasn't needed oxygen since we moved to Arizona. He sleeps well without it. He is getting through his second cold of the year and seems to be handling it like a champ. **knock on wood** The oxygen days seems to be over. However, I'm still having a hard time breaking away from the pulse oximeter. It has been a security blanket for so long. I've been telling myself that I have to break away. I don't hook it up to him at nap times and slowly weaning it from him at night as well. The doctor's seem to understand my concern and are supportive with whatever decision I make - to monitor or not to monitor him.

Hunter's eating habits are much better. We have been working really hard with him. He will eat two meals a day now. He has the same thing that we eat for lunch and dinner. He still is getting his night g-tube feeds. Because of this, he doesn't seem hungry in the morning. We are working at resolving this. The tricky part is getting Hunter to drink. He still does not have the concept down. Our new assignment is putting water in apple sauce. We make it a little runny and have him drink that. He has been trying it. Some days are better than others. But, he is trying it and that's a start. If we can get him to drink, the g-tube can come out.

Hunter still has other obstacles. His cerebral palsy is a big one. We take him for miniature walks with his rifton pacer walker. Hunter has difficulty with distance, controlling his walker, and he gets tired easily. We know that practice will make perfect. So, we insist that Hunter takes a short walk every day. The muscle spasticity does show and Hunter has trouble with scissoring and walking on his tippy toes. Our search for a good botox doctor is underway. He has his first appointment with one on October 1st. We also found that Hunter likes to swim. He gets exercise in the pool and that helps him. It relaxes his muscles and he is having fun.

Another one of Hunter's major obstacles is his vision. I try to imagine what it would feel like to have a blind fold over my eyes and figure out my way through space. Although Hunter is not completely blind, his vision is not good. We have struggled to get Hunter to wear his glasses. After I lost one pair in the mall, I think I finally have him getting used to wearing them. We aren't sure how much his glasses has helped him yet. We pray and cross our fingers that it is helping him. He just can't tell us yet. This leads me to his other obstacle.

His other obstacles are his speech and developmental delays. His vision and cerebral palsy has a huge impact on his developmental problems. We continue to work with him. We are learning sign language. It is not because Hunter will never communicate. It is because children with speech delays usually start speaking after you teach them sign language. For now, Hunter will not speak any words. I believe in the power of prayer. I will not give up on him.

Hunter is making slow progress in the things that he does. He loves to climb on furniture. He is also throwing things and loves to play catch. He remains at 30 pounds. He has been this size for awhile. He is at a good size.

Finally, I just received news that Hunter will be starting pre-school. This might happen as soon as April. I don't have many details yet, but will post more about this later.

Welcome to Holland

Welcome To Holland
by
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.

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©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.