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 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 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 hings …about Holland.

Lately...

So the past few weeks we have been fighting colds and croup going around. The girls got croup but Seth's cough has not turned into that and I am praying it stays that way.

This past month we have had a few doctors appointments. 

We had a ear appointment where they checked to see if the tubes were still in place and they also cleaned out one of his ears because he has had many ear infections in that ear. They looks at the results from his last ABR and he confirmed that his hearing is perfect and that it should not go away. He will see us back in 4 months. This was a huge thing for me because he has been messing with his ears a lot and I was just worried that something was going on but it is just something that he does.

We had an appointment with CRS at St. Joseph where they did a full body pediatric exam on him to see what services he qualifies for. We were there for a really long time. The doc wanted all of Seth's information from pregnancy to birth to NICU to now. He qualifies for a handicap sign for the car he will have an orthopedic doc here and then all of his other doctors are part of CRS so we will see them all at St Joseph when we need to. They got me a prescription for pediasure which is a huge thing because it was starting to cost a lot of money and since that is the only thing he eats consistently it was getting quite expensive. He will also need to go to a wheelchair clinic and get fitted for one. I still have to call to schedule that one. March 4th he goes back to CRS for an ERG (eternal retinal gram) to check his eyes because of the seizure meds he is on.

We also met with his neurologist because his seizures are still happening quite often. Dr Bernes said to stay on the 4 meds that he is already on because the sabril is helping but we also got the okay to give him an emergency drug if he is having a lot of them during the day. We actually have had to do this about 5 times so far because he maybe had 30 within an hour. 

PT has mentioned getting him a SPIO suit so we got the script from his pediatrician and got it into the ortho and we are just waiting on it. Also we are looking at getting him a stander which could take a while to get because she has to write a letter to the state on why he needs it. I get so frustrated with special needs equipment because of how expensive it is. I would love to get him this rocker that he would fall in LOVE with but it is about 2,000 dollars and we just do not have that kind of money or even special needs beds are anywhere from 1,000-7,000 dollars and thats just for him to sleep on and be safe. You would think for special needs kids they would know that you life is full of expenses that they would help in that area or the state would just make things easier but they don't. 

I have had a hard few days with Seth and just trying to comprehend what our future will look like and there is really no way to do this but if I really think about it we have a long road ahead of us and lots of laughter, tears, and PRAYERS!