Life is Good

For the last few months, I have turned more reflective of the past 5 years and what I have done, where I was, and what I went through. And really the one question we all ask, why me, why my child, and plain just why? I think that this is a good thing, as I'm figuring out what it is really that I have gained and learned from my trials.

During the last 5 years if any one started to talk about "enduring your trials" or "trials" period, I would tune them out. I didn't need to hear how to live through my trials, I was living a nightmare. I was enduring one day at a time, sometimes one hour at a time. Looking back I wonder really were the 5 years went. It went by so fast, that I can't believe it is here that my kids are where they are at. Did I really just live 5 years, it feels more like 6 months.

Now that I am in the "reflective" period, I am able to look at the things I have learned and count them closer to blessings in my life. From knowing my Heavenly Father loves me and knows me personally, he truly cares about me. Did I know this before, yes I did, but now I KNOW this. I don't know how many times I get comments like "wow, I don't have it that bad". I know this is weird, but if my trials help you to see how good you got it, I'm glad! I am amazed at how we are all looking to relate to someone, to know that someone understands us. At work, I meet a lot of people struggling with their own health and I'm glad to be able to understand them and that they know someone has been there, done that and holding a hand for them on the other side of the trial.

Living through a trial is a lot like taking a hike in the mountains. Your surroundings change as you walk. You may start out with lots of grass and open fields, but the higher you climb the more dense the trees become. Maybe a fog rolls in or a cloud cover changes what you see. And then you get to the top of the mountain, and you can see where you came from and around you. But the hike is not over, for you still have to go down the mountain to your car. It is all down hill relatively speaking, but not always there are still smaller hills to go up and down with. On the way up you had the morning sun and cooler weather, but on the way down it's afternoon and hotter you need to drink more water.

Just like that hike, sometimes you can see the trial before you, like us we knew when I was 20 weeks pregnant that we were going to have problems. We could foresee some of it, we could see the top of the mountain, but we didn't fully understand what we were going to see along the way. We could only imagine what the view from the top was going to look like and we wanted to see it. But as we got going on that hike, the top of the mountain seemed so far away, was it getting farther away? We had unexpected turns and hills that were more steep than we thought at first. I can honestly say that, though not necessarily at the top, I'm at a spot that I can see the valley and where I came from. It is amazing and beautiful, did I really climb that? I can see more bumps along the way, but I don't feel so blogged down by the surrounding fog. Life is turning beautiful again. And I want to help others to see the beauty that is around them.

I see the blessings from my "hike" the knowledge that I didn't know I was gaining, the friends, and the support from others. And I learned that others were on my hike, I just didn't realize they were there. They were also learning along the way. For me life has turned beautiful again. Does that mean that life is perfect. LOL NO! But life is good, my surroundings are good! I think I'm almost to the point of calling the last 5 years a blessing instead of a trial!

Sarah's Bad week

Monday Sarah hurt her foot jumping on my brother's trampoline. The Nurse Practitioner assured us that she sprang her ankle and did not break it and after a couple of days she would be able to walk on it and all would be well. After 5 days of still not being able to pressure on it, walking past her would hurt her foot. I finally took her in to see my favorite Physicians Assistant Randy Crockett. He has a great eye for x-rays and finding problems. Yes, the leg is broken, right about the growth plate and if you don't know what your looking for you would miss it.
















After getting her fit with a boot, I remembered that Sarah has been struggling with a sliver on her other foot for a couple of months, so I suggested he look at it (since I'm already paying the bill). So they x-rayed it not expecting to see anything (because wood chips don't show up on x-ray's), Well it showed up. It turned out to be a broken off thumb tack needle. Has been there since December. She was a good sport about getting some shots to numb the area and let Randy take out the needle. Poor thing, she is in so much pain. She was a trooper though!

Welcome to Holland

This is a story that was posted in one of my support groups. It fit so well with my life that I wanted to share it here. There are some days that I wonder how I got to Holland.

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'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.

Emily Perl Kingsley 1987

Changing an Ostomy Bag

Though it would be nice to have a video for this page, with Hyrums closure in the past it won't happen. But I have been asked multiple times about the process of changing a ostomy bag.

So things I used:

Warm water

Baby Shampoo

Cotton squares or wash clothes

Q-tips

Adhesive Remover

Barrier wipe

Ostomy Powder(different from Baby Powder)

Wafer and Ostomy Bag of Choice (I preferred to use two piece bags. Then I didn't have to "empty" his bag. I would remove the semi-full bag and replace with a clean new bag...thus never touching or dealing with the poo. This also helps cut down on the smell)

Ostomy Paste

Oder illiminator

Heating pad or something similar

How I did Hyrums bag changing:

1) Prep: I changed Hyrums bag in the bathroom, this gave me water and countertop space. I know some do it in front of the TV, but I left the sink dripping water and this alone entertained Hyrum plenty. I would give him extra supplies to keep his hands busy, big brother and sisters were a great help. My (at the time) 10 year old could change his bag. I found involving the older kids helps them as there is so much they can't do it is good to involve them as much as I can. So lay it all out ready to use, cut the wafer ready to apply. This helps so your not scrambling for supplies. Keep it in a shoe box or something similar, keep it on the same shelf whatever works for you, but having it all together helps for when it's time to change the bag.

2) Removal and Cleaning: This is very important. You don't want to leave any residue of stool or wafer. This keeps the skin around the stoma and the stoma itself healthy. Use the adhesive remover to help clean the wafer off the skin. I use the baby shampoo, any non abrasive, soft soap will work. You can use wash clothes or cotton squares to throw away. Between the soap and adhesive remover you want the skin very clean with no residue left behind. I use the Q-tips to clean around and under the stoma. Dip them in water twisting it under and around. Then use a dry Q-tip to dry the same area. Rinse and dry the surrounding areas.

I will sometimes do the above step with him in the tub. This gives him a chance to bath and play without the ostomy bag. When the bag explodes this is great way to clean up. It also gives you a chance to catch your breath and get the supplies ready for the next step, and getting the wafer ready for application. When he is done (and I'm ready) we towel dry and move on to the next step.

3) Ostomy application: Rub on barrier film onto dry skin all were you plan the wafer to touch the skin. Put light dusting of stoma powder onto barrier filmed skin, dusting off extra powder. Place the fitted wafer into place. Add paste around edge of stoma onto the wafer, covering any exposed skin around the stoma. Before attaching the bag to the wafer add 2-3 drops of oder illiminator to the bag. This will help cut the smell, just be prepared as it may change the color of the stool.

4) This is my favorite part. Apply a warm heating pad. I wrapped Hyrum up in a blanket with a heating pad against his newly applied wafer and bag. This was one of the only times he would sit and cuddle. I loved it!