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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Tuesday, November 26, 2013

Finding Thanks

I'm once again sitting in a cramped, sterile room with my daughter laying in a hospital bed. A virus has once again attacked her lungs causing her to need oxygen and medical treatment. We had been home less than 4 weeks from her last hospital admission. This is the sixth month in a row that we have been in the hospital with her. It has been tiring, frustrating, worrisome, stressful, and at times unbelievable.

It's had an effect on everyone in the family. Poor Jaycee has endured pricks, tests, x-rays, medicines, being woken up for treatments, and discomfort. She has not been able to go outside when it's too hot and humid or if people are burning leaves. She hasn't been able to go places and do things she has desired to do. And school? I hope there's nothing important to learn in first grade because she's hardly ever there. For me, I've been ran ragged trying to play mom, wife, and speech-language pathologist (my usual roles) but also the nurse and doctor at home. Keeping track of her appointments and medicine schedules have been mentally and physically exhausting. I can't work when I need to at times. I battle selfish thoughts of wanting her to get better so my life will be easier. My 4 year old son's life has been affected as well. He's been passed around to a couple of different homes when we are in the hospital two hours away from home. When we are reunited at home, he's clingy and has to be reassured that he'll see me later that day after he goes to school. It's sad that a four year old knows how to turn on a vest therapy machine and makes comments like, "Sissy's not feeling well." He has a fake cough that he produces until I comment on it so he can ask for medicine. Does he really feel the best way to get attention from me is to pretend to be sick? Not good! And my husband...He is torn between being with his sick daughter and going to work to make money for the family. He comes home tired and has to deal with a stressed out wife and a daughter who is rarely completely well.

Still, through all the changes, disruptions, and illnesses, I can honestly say that I have much to be thankful for this Thanksgiving. I'm thankful for my husband. I couldn't do this alone. I'm thankful for the good natured and sweet spirited son I have. I'm so thankful that Jaycee is alive and here with us. I'm thankful for the many, many people who have poured out meals, money, and gifts to support our family over the past few months. I'm thankful for a God who gives me strength and faith to keep going and mercy when I have doubts.

So it doesn't matter if we get discharged and spend Thanksgiving at home or if we will be celebrating it in the hospital. I can find thanks in any location as long as my family is with me in the room.
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Wednesday, November 20, 2013

Coming Full Circle with a Song

One of these days, maybe I'll quit blogging about the hospital and Jaycee being sick. But, not today... A few weeks ago, Jaycee was in a medically induced coma to recover from septic shock and acute respiratory distress syndrome. During this time, we played familiar things to comfort Jaycee. She still had her hearing but she was sedated and paralyzed by medicine. So, we played familiar television shows (Peppa Pig, The Wonder Pets, Barney) that she always enjoyed. I also downloaded 13 worship songs to give her an hour's worth of songs to listen to.

We listened to the songs over and over during those weeks in the hospital. Once we got home, I found it hard to listen to those songs. Maybe it sounds silly, but those songs would take me back to the hospital with the chaos and emotional roller coaster. They triggered things I didn't want to think about and remember. I knew it was something I had to get over, as some of these songs were songs I really loved. But, I didn't want to listen to them, think about Jaycee on a ventilator, and cry.

One of the songs was Nothing Holding Me Back by Bryan & Katie Torwalt. You can listen to the song here. A couple of weeks ago in church, the worship team sang this song. My first thought was, "Oh no...the hospital song!" I looked at Jaycee & she recognized it too! I wiped an occasional tear streaming down my face as I tried to sing the words chalked full of emotion for me. As I was singing the song, I was torn in this love/hate relationship with it. I loved the words and the melody but I hate that it had become associated with our time in ICU. Near the end of the song, the words "Jesus, you make all things new," hit me.

In the hospital, I sang and listened to this song and spoke that part in prayer and faith. Pleading with God to help bring life back to Jaycee's failing body.

But now, the words in that song are fulfilled. Jesus did make Jaycee new. She is living, walking, and breathing on her own. The song was a prayer in the hospital. But now, the song is a praise and a testimony.

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Thursday, November 14, 2013

Signs of Post Hospital Fatigue

Being in the hospital is exhausting for the patient and the caregivers. But, the exhaustion doesn't let up when you get home. For me, I've been keeping track of medicine, vest therapy treatments, physical therapy appointments, occupational therapy appointments, school work, my own work, the house work, etc. So, here are my signs for caregivers that you are still physically and mentally tired. (Yes, I have all the signs).

-While driving to your intended destination, you suddenly realize you are driving the absolute wrong way.

-It takes three tries for you to push the buttons in the right sequence in order to turn the oven on.

-You convince yourself that a soda at 10 am is ok and then you push it to 9 am, and then to 8 am. Pretty soon, you wake up drinking soda for a caffeine rush.

-You look at your calendar 4-5 times a day to see what you are doing and when.

-You frequently say, "What was I saying" during conversations.

-It takes 2 tries to get your child to school because you forgot his backpack.

-You feel like you could sleep sitting up anywhere you are at 2 o'clock everyday.

-You don't care if you wear sweatpants out in public. (But your spouse does!!)


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Wednesday, November 6, 2013

Faith: In sickness and in health

Not again! I hear my daughter cough and sneeze out thick snot. Sunday marked 2 weeks of being home from the hospital, and it appeared that she was getting sick again.

I have to admit, I could feel the anxiety raising up inside of me. I start my checks on her. The stethoscope comes out. Courseness in lungs. (Grimace) The oxygen saturation monitor shows typical levels with no change. She doesn't feel warm. It just seems like she has cold symptoms.

Before you shake your head at me for being a paranoid person, just know that my daughter was hospitalized in June, July, and August for her asthma or pneumonia. In Sept/Oct, she spent 4 weeks in the hospital and was on a ventilator. So, yes, I am on high alert with any change in her health right now.

My husband tries to calm me down, and we decide to head out to church anyway. Due to Jaycee's illnesses, we hadn't been to church in several weeks. I was missing the atmosphere of attending our church.

So off we went. The music was great. The sermon was...well jam packed with things I needed to hear: When you pray and believe God for something based upon the Bible, that seed is very small. You have to guard that seed. There are many outside influences that try to steal it away but you can't let external things affect your internal faith. Your faith, and perseverance to maintain it, has to come internally.

In other words, whenever I got up that morning and saw Jaycee's snot, I should have said/prayed, "Jaycee you are healthy and well. Your lungs are strong." I could have did some checks on her but not allowed anxiety to run the show. I could have told God thank you when a level looked normal. I could have prayed when I heard stuff in her lungs. But, I didn't. I think I did exclaim, "Oh Jesus!" but that's as far as it went.

It's so easy to get wore out when you are in battle after battle. It's easy to speak and think negatively when you are in bad situations.

But faith is the evidence of things unseen. Faith and the word are true no matter what our eyes and other senses tell us. Having faith that Jaycee is healthy and well when she's having no symptoms is easy. But when the first symptom shows its ugly self, the test of my faith is in my reaction. Do I really believe that she can keep from going to the hospital? Do I believe God can sustain her through another illness or that God can take away this illness? Do I see her as fragile or do I see her as an overcomer through Jesus? Can I remain calm when I see a symptom and not get too emotional and out of control?

Sunday morning, I didn't pass the test. But, I hope to have more successes and less failures in the future.

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