Welcome to Holland

The decorating bug has taken hold of me so I haven't had much time to post in the last few days since we are hosting a party here tomorrow evening. However, I have been trying to find this poem I read long ago in a different life and I finally found it. Here it is;

Welcome To Holland By Emily Perl Kingsley

I am often asked to discribe 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 trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gandolas in Venice. You may learn some handy phraces 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 am supposed to be in Italy." "All of my life I have dreamed of going to Italy."

But there's been a change in 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 pestilience famine and disease. Its 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 never would 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 awhile 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 are 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 signigicant 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.

So now when people ask me what it is like to have a child with special needs, I will reply with this; It is like going to Holland when you had dreamed of going to Italy. It does get better, but I still well up with tears sometimes when I think what Will will never experience, what I as a Mother will never get to experience with my son. When I see my beautiful seven month old niece already surpassing her older cousin in things there is a tinge of sadness that I experience. When everyone else is sitting down together for Christmas dinner and Will is all alone playing on the floor it makes me sad.

But when he hugs me so close and I get random kisses throughout the day I know that I am truly blessed. And what do you know, Holland is pretty awesome afterall!

CHRISTMAS

What an awesome Christmas! We started the day at home where Will opened his presents, a drum set, toy kitchen from Aunt Lindsay and Great Grandma, and some clothes, mittens etc. I made us breakfast and Matt put together "Wills" drumset lol. Then we packed up the car and headed to my Moms.

There we opened more presents with my sisters, Mom, John and his kids. It was so much fun to be around family. Especially when there are little kids in the family again. It makes Christmas just that much more special. Here is a picture of Will with his cousins. They are wearing the outfits that my Mom made for them. Aren't they precious?!

That is Matt trying to keep them all together long enough to get a picture. Isabella (pictured in front) was also baptized on Sunday. It made the whole weekend just that much more special. Here is Will with Isabella who is wearing the same baptismal outfit that Will wore. My Mom mad that as well. She is such a good seamstress. I love that she makes the kids these outfits.

Now I have to try to make some sort of order out of my house. It has been inundated with all of Wills new toys. We are hosting a New Years Eve party too, so I have this week to get ready for that. Now I will leave you with a picture of our wonderful little family. I hope everyone had as great of a Christmas as we did!

So yesterday was day two of walking/running for four miles with Will in the morning. We are about to head out again to do it today too. This time we might have the company of Debbie and Eugene who are family friends of ours. They have a house up here and are visiting for the holidays. It is always nice to have people with you while walking.

Matt just called, and he is taking Will and I out to dinner tonight at our favorite restaraunt. It is called Lagniappe and it is fabulous! The servers know us and love Will. They take him for walks around while we eat and they bring him toys to play with. They are awesome girls!

I think Wills esophagous has been bothering him more than usual today. He flipped out when he was eating his morning bottle, the one he normally eats just fine. So I ended up having to use his g-tube for that feeding as well today. I love having the g-tube. He has gained almost two pounds since having it put in. It gives me peace of mind knowing that he is getting the nutrition he needs know matter what.

He had a feeding tube called an NG tube originally. That one I hated. It is inserted through the nose and a tube is always in the throat that way. Will was not a fan either to say the least. Above is a picture of him with both kinds of feeding tubes.

So, as you can see, the g-tube is a lot more convenient. Especially since he will probably need it for at least a couple of years.

Happy Christmas Eve Eve everyone! I hope you have a wonderful holiday. I know we will!!!

Random Musings

So, I finally got my butt back in gear and started working out again yesterday. I ran/walked 4 miles at the Dome while Will slept in his stroller. I am going again today. I had started the 30 Day Shred at the beginning of November (which I love) and I did it for 10 days before quitting it because Will was admitted to the hospital again. It is so hard to keep up with a regular work out schedule when your life is filled with hospital stays and doctor appointments. Anyway, that could be a whole seperate post...

I also have to figure out a way to get out of my own head when it comes to weight loss. It is like I sabotage myself right from the beginning. I have never had to lose weight before, I used to always be quite thin, so now that I need to, I tell myself that I can't. We all know that when you tell yourself you can't do something enough times, it becomes true. I don't know why I get down on myself so much either. I have lost 30 pounds since Will was born, I just need to drop these last 15 or so. Anyone have any suggestions or tips for me to get over this self defeating attitude?

My poor little man threw up his whole last bottle last night. I feel so bad for him when that happens. At least now I am recognizing the signs of when he is going to throw up and I can position him over the sink. I guess this is just something else that we are going to have to get used to with his EE. I was reading another Moms blog earlier about her son with EE and she said throwing up is becoming so regular in her household it doesn't even phase them anymore. He just goes to the bathroom, throws up and flushes and then throws up again and flushes and comes back out as if nothing happened.

I feel so bad for Will when I really let myself think about it sometimes. All of the things he will never experience. He will never eat a cafeteria lunch with his friends, have a candy cane at Christmas or Halloween candy. He will never eat a traditional Birthday cake. No ice cream, no restaraunt food, and the list goes on. Matt and I are such big foodies that this is a hard pill to swallow sometimes. We are going to have to rethink how we do celebrations so that they don't center around food. Any other EE Moms happen to read this and have any ideas in regards to this that they would like to share? I would love to hear from you if you do. I suppose I have to take this one hurdle at a time. And the first one would be to get him to eat ANYTHING orally at all...

Weight loss competition

Today was a nice relaxing, normal day in our household. Matt had to work though, he has Friday off this week instead. Will and I hung out, delivered another pie to a neighbor that wasn't home yesterday and went for a walk with Myshka. I put Will in his sled, and it worked perfectly down the sidewalks through town instead of trying to push his stroller through all of the snow!

I also went out to a local restaurant for a friends farewell party for her ta-tas! She is having a breast reduction on Wednesday. It was a lot of fun and now I am filled with yummy pasta.

I decided to start a weight loss competition as well. I have been struggling with this last 15 pounds for what seems like forever. I have also always been a competitive person so I decided to put two and two together. It should be a lot of fun. It is $5 a person and will run January 1st through March 7th. There has been a lot of interest so far, and I am excited about the feedback I have gotten from so many people. It seems to be just the thing that everyone needs to get back on track. I am here to please! ;)
Anyone have any fun weight loss tips they would like to share? If anyone else would like to join, there are some spots left. Just leave me a comment and I will make sure you get the information!

Christmas Spirit

I finally feel like I am getting the house back in order. It is crazy how chaotic it all gets when you get back from a trip. Especially when you have a 16 month old who got lots of presents from his family while we were downstate!
Last year I baked all of our neighbors sugar cookies for Christmas. I didn't want to do the same thing this year so everyone is getting apple pies instead. I just finished baking them and two are delivered. I love the surprised look on peoples faces when they get gifts unexpectedly. I will deliver the last two tomorrow as long as everyone is home. I don't know why I didn't think to make one extra though because they smell delicious and now I am craving apple pie!
Ever since the g.i. doctor gave us the green light on giving Will some oatmeal cereal I have been trying to get him to eat some. As you can probably guess, otherwise there wouldn't be anything to mention, he will not have anything to do with it so far. He clamps his little mouth down tight whenever the spoon, or toy, or my finger comes close to his mouth with oatmeal on it. I am being patient though. I know that because of his EE he has passed all of the natural times when children learn to eat. It is going to take a lot of work. I hope everything goes well after his next scope and they are able to add another food for him to try. I don't find oatmeal very appetizing myself so I can't imagine he does either.
Tomorrow is Matts Grandmas funeral. I wish we could be there, but it is too far away and we just got back home from down there last Thursday night. My sister Jennifer, who lives only a hour away, said she was going to go. That met a lot to both of us. Thanks Jenn!
I can't believe it is already the week of Christmas. Time goes faster and faster every year I swear. Today at church the kids did a Christmas program. It was so cute. Soon Will is going to be up there doing the same thing. I am excited for him to start that sort of thing, but I don't want to wish all of the time away either. It goes fast enough all by itself.

Good news and sad times too.

Well, we are all back home now. We left last Saturday to head downstate to Matt's families house. His Grandma wasn't doing real well so we wanted to spend time with her. Will also had doctors appointments on the following Wednesday and Thursday so we thought that we would make a week of it.
The good news is that Will's appointments went really well. At his g.i. appointment the doctor decided he can start trying to eat oatmeal and wheat cereal along with his Neocate Junior formula. He will have another scope with biopsy in 6 weeks to see if that is something he can keep eating or if it has to be crossed off of the list. We switched around his medicine a bit because he is still vomiting more than he would like and because the old medicine was really hard to get in his g-tube.
Will also had an exploratory surgery done on Thursday to get a good look at his trachea since he has sub-glottic stenosis as well. The surgery went really well. The doctor gave him a couple of steroid shots in his trachea and manipulated a few things. At this time he isn't going to do anymore unless it gets worse. So no more surgeries for that!
On to the sad news. When we were about 15 mintues away from getting home last night we got a call from Matts Mom saying that his Grandma had passed away an hour before. I am glad that it was peaceful and she was at home with those she loved and who loved her. I am also very thankful that we were able to be there with her during the last week of her life. She was a good woman, Mother, Grandmother and Great Grandmother. She will be missed and remembered forever. We love you Grandma and are glad you are with Grandpa again.

I am back!

We now have internet at home again so I will be able to keep up with this once more. We have had a lot happen since the last time I wrote. Will was diagnosed with Eosinophillic Esophagitis (EE) at the end of October. It is a complicated disorder but it basically means that he is allergic to 90% of food. www.apfed.org has some good information on the disorder if anyone is interested.
He had a g-tube (feeding tube) put in on 11-15. It has made it a lot easier to feed him with it in. He was losing so much weight before. While doing the surgery though, the doctor noticed that he has a very small trachea. She said that it was the same size as a 28 week old fetus. Not so good in a 16 month old. So, now we also know he has sub-glottic stenosis. His first surgery for that is next week on Thursday.
So there is the fast rundown of what has been happening with us. I will try to update this every day or so now. We are heading downstate today to spend time with Matts family for Christmas. I am hoping the snow storm they are predicting holds off until we are safely there!