Thursday, December 26, 2013

When your child wears a Bi-pap....

...there are certain things you can and cannot do. The other day I realized that Jaycee has worn a c-pap or a bi-pap for most of her life now due to obstructive sleep apnea. For the last 4 years, Jaycee and I have had this love/hate relationship with her machine. She hates wearing it. I hate making her wear it. But, it's helping her breathe better at night, so we must do it. She's gotten more accustomed to her bi-pap over the years but some nights it's still a struggle to get it on perfectly (with no air leaks) and to keep it on her.

Here are some ways your life as a parent is affected when your child wears a bi-pap:

-There are no more spontaneous sleepovers. If you are at grandma's house late in the night, you cannot all of a sudden decide to let your child spend the night. There isn't an extra bi-pap laying around their house for her.

-If your child wants to spend the night somewhere, the temporary caregiver must be trained on how to use the bi-pap. Honestly, who wants to do this!?

-When you travel, you have to pack your machine up in a little bag. You also have to make sure you have distilled water to put into it.

-If you go on a rare date with your spouse, the date must end early before your child might fall asleep. You have to be home to put your child on their bi-pap.

-There is no more of your child cuddling in bed with you and sleeping there a few hours. They can't because if they do, they won't be able to breathe safely.

-Mom (or dad) cannot go to bed until the child is on their bi-pap and fast asleep. There's no more coming in late and everyone settling into bed at the same time at my house. In our case, we put the bi-pap on after she's fallen asleep, which can take 20-60 minutes.

-You have to make space in your child's bedroom for the bi-pap. Since it uses water, the space has to be "safe" from falls.

-You have to clean the parts weekly and remember when it's time to reorder new parts.

-You must memorize your child's bi-pap settings or write them down and carry it with you. If your child is in the hospital, you will have to know this information.






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Thursday, December 19, 2013

Teaching Christmas

"Mom, there's baby Jesus and an angel," my son exclaimed as we drove past an outdoor nativity scene.

"Yes, we need one of those for our house don't we," I said.

Elijah went on, "But, we need a nest for baby Jesus."

"A nest? Oh you mean a manger," I replied.
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I've made more of an effort this year to teach my children the meaning of Christmas for us as Christians. This season has so many opportunities to teach valuable messages but it's easy to let them slip by in the busyness of the holiday activities. It's also easy for Santa to steal the show from Jesus too.
  
So I've tried to talk to the kids about who the people in the nativity scenes are. We've read stories. We drew a picture of the nativity scene as we talked about who was there when Jesus was born. Although, Elijah had to draw himself in the picture too.
 
Sometimes it's hard for me to teach these religious beliefs to Jaycee. How do you talk about God with someone when there's no visual representation or thing to show them? There are some contrived pictures of Jesus but there isn't a Polaroid of him or some way to concretely describe that Jesus is God's son. I struggle with teaching my faith to her, especially because there isn't a good way to check her understanding of it.
 
I realized a few months ago that I talk about God and Jesus to Elijah more than Jaycee. I wasn't doing it on purpose, but I guess it was because I could discuss it with Elijah and only tell it to Jaycee. So I started to tell her things like, "Jesus loves you, Jaycee. God sent Jesus to the earth because he cares for you." Just simple statements like that to convey the fundamental message of what it means to be saved.
 
Does she understand? I don't know. Sometimes I will ask her if she loves Jesus. Sometimes she indicates yes and sometimes she doesn't say anything.

But, she has been pointing to the scenes of Christmas and signing: mom, dad, baby. It's a start. She's learning part of the Christmas story. Maybe next year, we'll make that nest for baby Jesus.

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Wednesday, December 11, 2013

A Special Purposed Life Swap

Sometimes, I wish people could spend a day in my shoes. But, it's probably not for the reasons you think. Sure, if someone swapped lives with me, they'd be a little overwhelmed by the vest therapy treatments. The person would probably wish they had a nursing degree as they pulled medicine into a syringe or put Jaycee on her bi-pap at night. They'd be lost when it comes to keeping Jaycee safe and secure inside the house and outside of it.

My intention in a life swap would not be for pity or to get people to understand the work involved in Jaycee's care.

No, the swap would be all about teaching people the value of life and the value of setting right priorities.

I want people to understand that my nonverbal child is smart, funny, and sweet. She can sign and gesture her way through a television show that is truly entertaining. Her hugs and kisses are desired by everyone close to her, except her little brother. A day with Jaycee would surely show other people her personality that isn't defined by the label of Down syndrome. If they opened their heart, they would feel the love she gives to those close to her.

I want people to see that in caring for someone else day after day with no "recognition" is an opportunity to act out the heart of Jesus. Having a special purposed child means you have to die to self even more. Putting a child's needs above your own is what any mother does, but this goes on in a deeper way and for a longer period of time when your child is special purposed. Loving someone unconditionally. Showing patience and understanding in situations that can test your limitations. Caring for your special purposed child teaches you about yourself. Your strengths and your weaknesses as a caregiver are revealed. If someone swapped lives with me, they would hopefully discover something new about themselves.

There are too many people out there selfishly going through life with out-of-whack priorities. I'm not a perfect person, but I do believe that having a special purposed child gives you a unique perspective. When you have a special purposed child, you realize that a B or a C on a report card is okay as along as it was your child's best. You understand that a child that doesn't talk has communication. You understand that your child's life purpose is important even if it doesn't include being a star athlete or the most popular child. You understand that the size of your house or the amount of money in your bank account means absolutely NOTHING when your child is laying sick in a hospital bed. You understand the importance of positive relationships because in times of trouble, certain people have proven themselves invaluable to you. You understand that the lives of those with disabilities need to be protected from the peers on the playground all the way up to the lawmakers in Washington.

If I swapped lives with someone, that person would truly learn so much. And me...I would miss my life.

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Wednesday, December 4, 2013

Being Irresponsibly Responsible

After years of struggle, I have came to the conclusion that some things are bound to happen beyond my control. I can do my best to put the odds in my favor but it doesn't guarantee that things will work out the way I envision.

I drove myself nearly insane the first three years of Jaycee's life trying to make sure she was educationally and developmentally stimulated. When you are told, your child is "behind" other kids starting at birth and will always be behind, it is a hard pill to swallow. There was always a skill she needed to master to move her forward or make her more independent.

I'm almost afraid to admit what I did, but I will. At the beginning of the week, I looked at my schedule, her therapy appointments, and wrote out some skills I wanted to work on each day. I usually worked with her 5-6 days a week. When she was a toddler, it was things like practice body parts, practice straw drinking, work a puzzle, complete oral-motor exercises, etc. I felt like I HAD to do something almost everyday in order to help her get the best start in life. There were a few things I enjoyed doing with her like sign language but most of it was "work." I put a lot of pressure on myself. I felt if she couldn't get something, it was somehow a reflection on me and what I was or was not doing. I felt responsible for her developmental progress. Even when Jaycee started attending preschool full time at age 3.5, I still worked with her a few afternoons a week and on the weekends.

Some of this was due to having early intervention therapists in the home early on giving me ideas or tips to help her. They were doing their job and I learned so much from them. But, it also felt like a never ending to-do list. Some of this responsibility I felt was because I am an early intervention speech-language pathologist. I felt that her lack of speaking or signing or learning things may be a poor reflection of my professional skills. Plus, I had been engrained with development and teaching activities. Then there was the common saying some parents say, "Teachers can tell which parents work with their child." Another thing I heard a parent or two say was, "Of course, my kid can do that, I work with them." (As if that applied to all situations!)

It was a combination of things really that all added up to me feeling completely responsible for things that I didn't need to feel responsible for. Yes, doing activities with her was necessary but the motivation and the attitude that came with it was wrong. It made me feel so overwhelmed and burdened.

It really wasn't until Jaycee started kindergarten last year that I didn't try to sit down and teach her anymore. (Except for the summer, but I really scaled down then!!) I finally let go and decided to be her mom first. I realized that I was not completely and solely responsible for her learning skills. There are things she may never be able to do and that's ok. It doesn't mean that I messed up or was lazy. It doesn't mean she didn't try hard enough either; her body has limitations just like everyone else. Hey, that's why I didn't study mathematics!

Then, there's the whole thing with Jaycee's health. In 2011, I drove myself nearly insane again trying to find a reason why Jaycee kept getting sick. She went to the intensive care unit two months in a row for pneumonia, and I became a little obsessed with finding out why she was sick so I could avoid it. Again, I felt responsible for keeping her healthy. Maybe I felt that way because my brain tends to overthink things. Maybe it was because a nurse commented on her high oxygen requirement and said, "Someone needs to reeducate you on your asthma action plan." (I think I said something like, "I know the action plan and I have a master's degree, that's not the problem.") That accusation hurt. Maybe it was all the questions like: is she around smoke (no!), pets (no!), sleep with stuffed animals (yes-but come on!) that got me thinking about how I could help prevent her asthma from triggering.

Whatever the reason, I felt responsible whenever she got sick. (As if I could give her pneumonia.) If she was admitted in the hospital, I would mentally retrace my steps for the days prior and figure out what I did wrong that may have contributed. Since 2011, we have avoided smoke in any form like bonfires or cook outs. I started keeping my windows shut nearly all year round. If someone is burning leaves or mowing the grass, I don't let her go outside. If it's too hot or too cold, I limit her time outside and try to have the shortest route in and out of somewhere. I started doing some sort of dusting every week. You get the idea... Some of these things were based on reality and knowing her triggers like the hot and cold weather and smoke. Some of these were based upon possibilities that other people informed me about.

It's a hard way to live when you are constantly finding things to blame yourself for. It caused a great deal of stress and anxiety in my life. It wasn't until earlier this year, through prayer and introspection that I learned that I am not responsible for everything that happens to Jaycee's health. If she gets sick, it is not necessarily because I did something wrong. Sometimes a germ is to blame or her body's weakened state. I have come a long way in my thinking. However, I still have flare ups when I hear her wheezing for days. I find myself doing things like cleaning my vehicle of all dust and dirt. I have to check myself once in awhile. In the past few months, I have had moments of self-blame when she's been in and out of the hospital. But, I try not to allow myself to dwell on these things too much now.

I hope in the future I can have more "irresponsible" thinking. I hope I can really believe that some things that happen are beyond my control. I hope I won't beat myself up and overanalyze situations that come up. And I hope this entry can help someone else too.


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