Amanda's Story: Trisomy 18

Over the years I have meet many wonderful people who have taught me so much. However, one of the lessons that I hold the most dear comes from a wee little girl who is only 15 months old. Through her life I have learned how important it is to always have hope. A little girl has taught me that there is someone out there that is listening to our prayers. In the spring of 2007, we were thrilled to find out that our dearest friends, Eric and Esmirna, were expecting a baby. Unfortunately just a few months later they gave us the news that they'd found out that their daughter had Trisomy 18 and that the prognosis was not good. However, they remained positive that things would turn out as they should. I would love to share Amanda's story with you in the words of her father, Eric.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 

November 12, 2007. Amanda
Josephina Lopez-Cugurs is born into this world. A very special baby girl,
special to me because she is my first and only child, special for my wife as
she is her first daughter, special in this world because she has Trisomy 18.

Trisomy 18 is a very scary diagnosis. The medical
profession classifies this condition as incompatible with life. You are
lectured over and over about the fact that these babies most often do not
survive birth or live a very short while. They are born into this world to
suffer. It is suggested to you to terminate the pregnancy.

We chose not to, we researched this condition, got in
contact with parents of children who have or had this condition. We put our
faith into our God that he would help us get through all of this. And besides
she was our baby girl and nothing was going to change that. She would get all
our love and care.
On the day Amanda was born we put our faith into her. Amanda would guide us
from here on. She would guide us. My wife said to Amanda on the second day “It
is up to you if you wish to stay or leave. If you stay there are many people
here that love you very much. If you decide to leave there are many people up
there that love you just as much”.

The medical staff painted a grim picture. She would not
make it through the night, prepare for the worst. She made it through her first
night. The next day did look grim; we decided to have her baptized in the
hospital. By the end of the week, on morphine and little food we decided to
take her home.

We cared for and nurtured her. Day by day she grew
stronger and stronger. She had made her decision to stay with us.

Amanda will be celebrating her first birthday very
soon, she already spent her first Christmas with us, and we are looking forward
to her second Christmas with us.

There have been few complications with Amanda, despite
her VSD and PHT, which are quite normal to have with Trisomy 18 she is a
healthy and very happy child. Just recently she was hospitalized for two weeks
to treat a cold and viral infection in her kidney, but she is back home with us
and happy to be back.

We do not know how long we will have her with us, this
is why we try to make the most out of every moment of every day that we have
with her. Amanda has made us stronger both physically and emotionally not to
mention spiritually. 

The bond we have with her is so strong. When you have a
child with a terminal illness and require so much from you it can be quite
draining. It is very draining but we devote ourselves fully to her care. We see
a very happy child, she recognizes us, and she laughs and smiles. Amanda brings
so much love and happiness like you cannot imagine. We treasure every moment
with her. She has made us much more aware of what it is to care and love
someone. We would not want to change anything about her, well except her
trisomy, and that is impossible. We have learned to accept his fact about her.
She is our baby girl and deserves all our love and care which we provide
willingly.

We have learned that these children deserve to live as
we all do. It is not up to us to decide otherwise. They bring you joy and they
love you just as much.

We would love to share more stories about Amanda, what
we went through during her pregnancy and even our interactions with all the
medical professionals and institutions that we had to deal with. Feel free to
contact us if you want to know more.

Thank you,
Eric Cugurs, Father of Amanda

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I think that pretty much sums it up. Amanda is blessed to have such wonderful parents, and we are so blessed to know her. I hope to be able to share updates on her progress as time goes on. She's become like part of our family and we miss her now that she is so far away. She's in our thoughts often as she has touched our lives. I hope that she will touch yours as well. If you would like to contact Eric for more information on Trisomy 18 you can leave a comment and I will get in touch with him.

 

Cooking with Children

Cooking is one of my favorite things to do and the wonderful thing is that it is something that can easily be done with the children. They also learn so much from the experience. It's pretty much the perfect homeschooling activity.

Here are some of the wonderful benefits of preparing food with your children.

1. The kids get to choose healthy produce from the grocers (or even better, from your garden).

2. They learn about nutrition and the human body when you talk to them about why certain food choices are better than others.

3. They learn that it is okay to be creative and to try different things (a big hit here is Mum's never the same way twice spaghetti sauce).

4. The learn cooperation and turn taking when you cook with more than one child at a time (each taking their own turn to stir or add ingredients).

5. It's a wonderful opportunity to "teach" math concepts such as fractions, time and measurement).

6. They also get to learn about science concepts like boiling/freezing and reactions (like yeast or baking soda making things rise).

7. They teach us that the best part of cooking is just being a kid and stealing tastes out of the bowl!

A Whole New Look

I want to thank my dear friend, Karyn, for the new look of Mama Manuscripts. She so kindly designed the new banner for me. Thank you so much, friend.

Mama Manuscripts may end up going silent for just a while as I work out some issues with my account. Hopefully I can get things sorted out in the next day or two but if not, I will not be able to post to the account as of tomorrow. No worries, though, I will be back ASAP!

Well, it works

but I can only post one picture to the blog at a time and then I have to come back over here and edit out all the added stuff I don't want AND when you click on the bear then you can see ALL the images I have on flickr and that wasn't my intention (as I want to write about the photos too).

If anyone can help me out, I am wondering how to transfer my pictures from Flickr and Picasa to the laptop. I put all my good photos on there programs before we packed away the desk top computer (that was giving us issues). However, typepad asks to upload the photos from the computer and doesn't seem to make it easy to link to photos without having to go into the HTML code (which I'd rather not have to do). Any way to download the photos off of these programs?

Needle Felting

I've recently started needle felting. Here is the first little fellow I made. He is just over an inch high.

The is a short post because I am trying to publish a blog entry from flickr just to see what it will look like.                                           

Eeks, don't mind the different look!

I'm trying to figure out how to customize my theme! I'm not terrible computer literate so don't mind me. If anyone knows how to make a banner for the top of my site please let me know. I don't have any spiffy photo editing programs so this could be a challenge!

The Last Two Photos

My camera will ever take....

Unfortunately, moments after these photos were taken my camera met an untimely death as it collided with the floor as I was downloading these photos to the computer.

I'll likely be sharing some pictures from the past for the next little while. I had the chance to look back at some pictures today and I'll likely share some of them over the next while until I can get back in business with a new camera.

Popsicle Stick Basket

I am not a crafty person. I don't mind the kids getting messy. We get right into baking (hands and all) and I'll set up a science experiment on a moments notice. When it comes to glue, glitter and paint I begin to shake and go weak in the knees. Yes, I took fine arts in college and enjoyed the experience but I was only mediocre. I "had my own style" and it wasn't what the teacher was looking for and I think it's scared me off creating in a way. I totally want the kids to have their own style and create all kinds of wonderful and wild projects but I still can't help avoiding the experience whenever possible.

I've decided though that it is important for the kids to just get into it and create. I've taken out the art supplies that have been hidden away in a plastic tub for over a year. The kids are free to use them whenever they choose. Unfortunately, I think I've scared them off of creating as well and they have been very cautious to approach them. I've had to come up with some crafting ideas to get us going and we started with something really simple and well, practical, with easy to follow instruction. I don't particularly consider it creating (as we just followed someone else's formula) but they needed to see that gluing things together was fun.

You can get instructions for this basket here.

Some practice gluing just for the fun of it. (I am ashamed to say that it is the first time the kids have ever used school glue).

The top of the basket that  I started for the kids. Liam's "fences" in the background. He wanted to build a fence frame around the table but I wasn't sure what we would do with it after wards so we compromised and he made the fence around one side of the table only.

After I started it the kids took over and did a really good job taking turns putting on layers.

Morgaine made the base while Liam looked on (impatiently, by this point, waiting for the moment we could turn the basket around to see our work).

The finished product! I think it turned out nicely.

I have to run because I am busy turning a box into a transformer with Liam. Once you start creating you want to create all the time. I hope that we'll be able to share more projects with you soon. Maybe we'll even venture into the forbidden world of paint. Maybe we'll even finger paint....

Maybe...

Look Shannon!!

I have a real fridge now!

Morgaine said, "It's such a nice Fridge, Mum. You really, really like our fridge."

The snow tastes better in Nova Scotia

We have a large yard here that the kids are enjoying. The kids were out a couple days ago and Morgaine broke off a piece of the crusty snow and put in her mouth exclaiming that "the snow tastes better in Nova Scotia!". 

Of course Liam had to try it too.

"Here, would you like some too?

Just beware of the yellow snow (we didn't have that issue in Vaudreuil as all dogs were leashed). That is not the case here!

Chugga, Chugga, Choo-Choo

The kids and I had a wonderful time on the ViaRail and would do it again in a heart beat. The attendants on the train were really wonderful and indulged the kids all the way (Morgaine is such a charmer *lol*. Who could resist?). The kids were totally exhausted when we got on the train and were fast asleep within 30 minutes of leaving the station. Our attendant was shocked. He'd put down the beds at the kids request right away (he said "the kids love to crawl around on them and look out the window"). He checked back in after 30 minutes to find them asleep and was so surprised! I crawled up in the top bunk and read for a while but was soon lulled into a deep sleep by the trains movements.

After 12 hours of sleep, the kids awoke bright-eyed and bushy tailed ready to explore.We made our way to the observation car, Morgaine saying "Hello! Good-bye!" to each passenger we passed, where we spent a better part of the rest of the trip.

A favorite of ours was eating in the dining car, where the kids proceeded to eat their, and most of my, breakfast. Again the attendants were shocked (they'd recommended the kids share a plate to save me some money...they were ALL about me saving money...I hope we didn't look too poor or something *lol*). My kids, however, are huge breakfast eaters and ate their French toast, then shared my eggs and stole all my toast. Hey, breakfast is the most important meal of the day, they say!

The food was excellent (I had lunch, while the kids did not as they were stuffed from breakfast), the staff was courteous and helpful, the ride was all around pleasant. It certainly is a great way to travel and I can see myself doing it again to visit the family. I have no idea why we didn't think to travel this way before.

Thank you ViaRail!!

We've Made it!

We're proud to say that we've arrived safely in Nova Scotia and have pretty much settled into our new house. We're looking forward to the adventures that we will have here and the people that we will meet. I look forward to sharing more with you all as we explore this new area that we will call home.