Holland

Yesterday was our LONG appointment withe the hearing loss clinic at Children's hospital. I am happy to say the ball is finally rolling for Marae to get her cochlear implants. We have a meeting with the surgeon next Friday and then a psychosocial evaluation the following Tuesday with a psychiatrist at the CI clinic. I have made it known that my desire is to have the surgery done and the implants activated before Christmas so Marae can hear her first Christmas. I think it may actually happen as long as our insurance cooperates with us. My boxing gloves are ready to go and since we are jumping on this so soon, I'll have a good while to fight for Marae. The insurance WILL eventually pay but we are fighting for an early implant (before age 1).

I'll spare you the boring details of our 4 hour long apt. in which we were confined to a small room most of the time. But I will touch on a few points. Maraes blood is being tested to see if she is carrying a virus she can contract from me during pregnancy. This virus looks like the common cold to me but it steals your growing babies hearing, damaging the hair cells in the cochlea. There is no reason that I would feel great about for Marae's hearing loss. But I hope it is this virus instead of a genetic cause. If it's genetic it becomes something that could occur for our future grandchildren, or effect any unborn family on Luke or my side (depending on who the gene came from). If the test comes back negative than we are getting approval with our insurance to have the $4000 genetic testing. Regardless of genetics or not, this wont stop Luke and I from continuing to build our family. In fact if they told us that without a doubt our next child would be born deaf just like Marae, we would absolutely want that child!

We had the opportunity to meet a psychologist at Children's who is deaf and has been deaf her whole life. She was beautiful and it was amazing to watch her talk to us with her hands. We had an interpreter of course. It was just amazing for Luke and I to see and to realize we have entered this deaf world and we will forever be apart of it regardless of the implants and Marae's access to sound.

Marae had her first in home visit with her speech pathologist. This woman started Listen and Talk school and program. She use to be an audiologist and has 30 years of experience working with kids 0-3 to help them develop their hearing and speech skills. She asked me how I was doing with the grieving process. I told her that it was much like the grieving process I experienced with my mom. I told her there were times it didn't bother me and other times when something would trigger the tears again. I told her about my fears and the strong sense of self we will raise Marae to have. I told her how we are raising her for more than this life and in the next she will be free from hearing problems. I really like her and am so excited to have her expertise for the next three years. She shared something with me and I thought I would share it with you all. This woman who wrote this is referring to the grief of raising a child with any kind of disability. I still have a hard time calling Marae's hearing loss a disability but I suppose it is, though I'm not sure how exactly it will disable her in life.


-Welcome to Holland-
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 are going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may even 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 suppose to be in Italy. All my life Ive dreamed of going to Italy."
But theres been a change in flight plans. They've landed in Holland and there you must stay. The important think 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 guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never 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, Holland has tulips, Holland even has Rembrandt's.
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 suppose to go. That's what I had planned." And the pain of that will never ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.



I would only add to this that I am in Holland because this is exactly where I was meant to be. Holland for whatever reason is a better place for me than Italy. I'll try to remember that in the ups and the downs of this Journey.

I have new things to work on with Marae this week and I am happy to say that a woman with 30 years of experience observed Marae with her aids in and said she definitely felt she was responsive to sound. Praise God for that!

Since it is more than 70 degrees outside, I'm off to the park with the kids. Thank you Jesus for Today and three amazing children you have entrusted in our care.