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.

A bi-pap has changed my daughter's childhood, and it has changed some aspects of my life. Still, I'm thankful that there's a solution to her sleep apnea problem even if it life altering at times.




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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.
**********************************
 
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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Wednesday, October 30, 2013

Getting Focused

Walking down the street, Jesus saw a man blind from birth. His disciples asked, "Rabbi, who sinned: this man or his parents, causing him to be born blind?"
Jesus said, "You're asking the wrong question. You're looking for someone to blame. There is no cause-effect here. Look instead for what God can do."
John 9:1-5 Message Version


This week I read this passage as part of my daily Bible reading. I love this passage of scripture for many reasons but this is the first time I have read this scripture in the Message version of the Bible. This version spoke new things to me.

When something bad happens, it is often human tendency to figure out the why of a situation. Why did my loved one get sick? Die? Get into a horrible accident? Be born with a condition? Some people blame God for their situation, some see a situation as a test from God, some blame Satan, some blame the sin of the person, some blame the sin of their ancestors, and on and on. Ten different people can come up with 10 different reasons why something bad happened. It can be confusing. Some people get stuck here in the 'why' spot trying to figure out what happened, who to blame, and possibly how that can get them out of it.

I know I have in the past.

It took me years to get past trying to understand why a God serving Christian could have a baby born with Down syndrome and a serious heart defect that caused congestive heart failure. Everyone gave me their opinion. To some, I had sinned and caused this to come. Other said Satan was to blame for the situation, trying to steal my baby's health away. Others told me Jaycee was a gift from God that He wanted me to have. One kind soul told me my daughter "had a demon" in her causing her Down syndrome.

I learned that as I struggled to understand why Jaycee was born with a syndrome and health problems, other Christians, who knew us, were struggling too. As I write this, I want the readers to understand that we were upset with the fact that Jaycee was going to have a harder life, physically, mentally, and medically, than any other child.

Asking questions and trying to understand why isn't horrible unless it impedes your relationship with God. If you get stuck in the blaming and the reasoning and don't move on, then that's a problem. Just as Jesus said, you're asking the wrong question. Your focus is on the wrong part. Look instead what God can do.

The bottom line is....no matter what situation you are in, God is the solution, the peace, and the source of joy. Focus on what God can do in your situation.

In the past few weeks, I have had a few people ask in my presence, "Why would Jaycee have to go through this sickness? I don't understand it."

I don't understand all of it either, but I have found an "answer" that satisfies my soul that maybe I'll get into in another post. I'm not upset that Jaycee got really sick recently. A few years ago, I probably would have been upset. I would have questioned God and been upset that He didn't prevent it from happening. But, not this time. All I feel is gratefulness that God was able to supernaturally bring Jaycee from the brink of death back to life and back home to us again.

God did something in my situation. I'm not looking for someone to blame. I'm not going to lose my focus.
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Wednesday, October 23, 2013

We're Home!

I viewed the hospital from my rear view mirror last week with a smile on my face. A few hours later, my van pulls in my driveway. My house looks different. There is a newly built wheelchair ramp over the front steps. My husband proves again he is handy with a saw.

I lug in a new vest airway clearance machine. Twice a day or more, this machine will be used on Jaycee. I'm glad to have this new machine; maybe it will help keep Jaycee out of the hospital when she gets a cold. But, it's also another indication that her body isn't performing right and needs extra support to thrive.

Inside, Jaycee's mattress is on the floor. She is too weak to walk and get down from bed. Sometimes she forgets this though, so we have to take precautions like this.

The stroller that I usually use for long outings or shopping trips is now a crucial part of Jaycee's mobility. Instead of being stored in my van, it too is stationed in the house.

There are these and a dozen more changes, but everything is fine because Jaycee is home. Our family is complete. Elijah has his "sissy" home. Even though things are different, it's fine. Changes are okay as long as Jaycee is with us.
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Thursday, October 17, 2013

A New Special Purposed Life

Since my last post, Jaycee has made amazing progress. She is off the ventilator and breathing on her own. The illness that almost took her life away did not succeed. Jaycee is a living and breathing miracle.

She is able to give hugs and kisses now. Jaycee has said "mama" and "bye-bye" in her very weak and hoarse voice. She's given high fives and thumbs up. She has asked for spaghetti, mashed potatoes, and pizza in sign language. Her mannerism are coming back. The things we have missed and longed for are returning and we are glad.

But, laying still in bed for three weeks took its toll on her body. She is extremely weak. Before this hospital stay, my daughter could walk, run, jump, dance, and go up stairs. Now, she's so weak she can sit up only briefly (if I help her get to a sitting position) before falling over to the side. There are many things she cannot do now that she could do just one month ago. Jaycee has never had regression (loss of skills) before.

And so, it appears that for the time members of my family will experience a new special purposed life. It's one that we weren't prepared for but one that seems oddly familiar. When she was a baby, I watched her receive physical therapy to help her learn to sit up, stand, and walk. Now, I'm going to watch it all again when she's 7 years old. I'm going to have to learn to bathe, diaper, and dress a child who isn't capable of doing these things herself, but now it's with a 75 pound "baby." I'm a little scared of this new life. I'm already exhausted by the things I've tried to do with her in the hospital. Part of me wonders how I am going to do this when she's home trying to regain her skills.

Seven years ago, I doubted my abilities to be a mom to a newborn who required special care due to her heart defect and congestive heart failure. I will not waste energy doubting my abilities this time. Every challenge she's had, we have faced together and somehow gotten through. This time will be no different. So here begins our new & revised & hopefully temporary special purposed life.....
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Thursday, October 10, 2013

Living in ICU

Most statistics say that 90% of parents who find out their unborn baby has Down syndrome will terminate the pregnancy.

During Jaycee's 7 years of life, I have done everything in my power to keep her alive. Through 2 heart surgeries, 2 heart ablations, and over a dozen hospital admissions for illnesses, I have prayed for Jaycee to live. Jaycee's went blue so many times at home that I have lost count. Through every emergency and every illness and everything that has tried to steal my Jaycee's health away, I have prayed, willed, and wished her to stay alive.

The past 2.5 weeks in the intensive care unit (ICU), I have intensified my efforts. One of the first things I told her after seeing her on a ventilator for the first time was, "Jaycee fight. Live Jaycee. Hold on and fight." I have continued speaking this in her ear throughout this time in ICU. 

"Jaycee, I know you are tired, but fight. You can live; don't give up."

On Sunday, things got bad here at ICU, I thought I was losing her. Even the doctor later admitted that he was scared. But things have turned around through God's grace and a lot of medical professionals using their skills. Jaycee is living. She's still on the ventilator, but she's doing better.

Sometimes, I think about the people who terminate their babies with Down syndrome. I wonder if they met me, fighting to save my child's life, if it would make a difference. While Jaycee has been laying in bed, I have missed hearing her giggle, seeing her sweet smile, hearing her say "mama," and watching her dance to Barney. Her brother misses playing with her. Her daddy misses her hugs and kisses. Her school friends, who have special needs, sign for Jaycee and wonder where she is. Her teachers miss her outgoing personality and the dynamic it adds to the classroom. Her kids church workers miss seeing Jaycee run and invite herself on stage to dance to worship music doing all the motions perfectly. I'm sure our local gas station owner misses seeing Jaycee run through his store straight to the juice and then to the counter where she tries to pay him using the "take a penny" change. Everyone is rooting for Jaycee; praying that she will live.

Strangers may see a child with Down syndrome who can't talk and doesn't always listen to her parents. But the people who know her, see a girl with personality, attitude, love, a strong will, and surprising abilities.

So, we will keep on fighting to save her life. I won't give up on her. She's too important.
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Wednesday, October 2, 2013

My Life on DVD

On September 22, my daughter entered the ICU. She has been on a ventilator ever since.

If my life was a movie on DVD right now, the movie would have moments of sadness, suspense, and hope. There would be times when people would shake their heads and say "That could never happen." But it did because this story is true.

There are times I find myself in the hospital wishing I could hit fast forward. I want her off the ventilator so we can hug and kiss. I want to know what her life will be like in 1 week, 1 month, or 6 months from now. I want to fast forward through some of this heart ache and discouragement and get to the part where hopefully things are better. But I can't because this story is unfolding now.

There are times when I am laying awake at night with my life rewinding. I'm playing back awful scenes. Like, when the doctor told me she would need a breathing tube and when I watched the doctor bag her two times when her oxygen levels dropped. Or when the doctor told me on September 23rd early in the morning that she may not make it. I don't want to rewind to these events; they have the power to get me completely discouraged. I try to pause this thinking and press play-to live in the present.

Hour by hour, day by day, present thinking. Through tears, prayer, support, and the word of God, we will get through this. 

Psalm 118:17, Acts 17:25, Psalm 34:4,7

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Friday, September 27, 2013

From the Toy Store to ICU

Saturday afternoon, I took my kids shopping at Toys R Us. Jaycee had a great time picking up toys, playing with them awhile, and throwing them down. It was hilarious. We had such a great time going up and down the aisle. I loved seeing what toys she was drawn to.

Then came Sunday. What started out as a little sickness turned into a huge ordeal. We got her to the emergency room. She was feverish, tired, having difficulty breathing, and vomiting. In a short time, she was in the intensive care unit (ICU). In a few more hours, her monitors started going off. Her blood pressure went critically low. Before I knew it, I was sent out of the room so Jaycee could be intubated. This was a first for us.

And so this nightmare that started on Sunday has continued on until today (Friday). She's been diagnosed with pneumonia, rhinovirus, septic shock, and acute respiratory distress syndrome. Jaycee is the sickest she's ever been. She still has the breathing tube and has been sedated this entire time.

I haven't heard my little girl's sweet "mama", seen her smile, felt her kisses, or watched Barney with her. I miss her. I have cried, prayed, given her pep talks, and tried to keep it together.

Life is so precious. Every moment is a gift. You never know when life will change in an instant.
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Wednesday, September 18, 2013

"Talking" with Jaycee

When I talk to my daughter, our conversations are a little different. She's 7 years old but only speaks about 12 words or so. She signs, gestures, and makes noises to communicate a variety of things. For the past couple of years, Jaycee has also used a speech generating communication device. Her device is the Vantage Lite made by PRC. Here's are two short videos of conversations with Jaycee: 




video


video



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Wednesday, September 11, 2013

Skype & the Nonverbal Child

What do you do when your basically nonverbal child wants to use the phone?

Well, first you call up grandma and let Jaycee grunt noises into the phone. Grandma asks yes/no questions which Jaycee responds with "uh." Grandma asks questions using the couple of words she can say. "Are you with mama, Jaycee?" 

Jaycee says, "mama," if she's in the right mood to respond with a word.

As grandma talks, Jaycee listens and smiles. Grandma can't see Jaycee's expressions. She hears silence. Finally, grandma says, "Is she still there?"

So, that is how the past few years of phone calls have went for Jaycee.

And this year, I discovered Skype and video calls have changed our life.

Jaycee lights up when she can hear and see her grandma. Jaycee can talk to grandma in sign, using her communication device, or words. Grandma can ask a variety of questions now that other options are available with the video. Grandma can see her facial expressions. Grandma can see if Jaycee leaves and doesn't have to ask if she's still in the conversation. The conversation isn't so one sided now.

I initially got Skype because my husband and I took a trip earlier this year. I couldn't go 5 days without seeing my kids, so Skype seemed like a great idea. But since then, I've used Skype when Jaycee says she misses her grandma. We used Skype when she was in the hospital for a week this summer. She was able to see her cousins, grandma, and brother. It was nice because her brother could see us in the hospital too through Skype. She was able to Skype with her teacher while in the hospital too!

At first, I got Skype for me, so I could see my kids. But, Skype has opened up so many doors for Jaycee. I think Skype is essential for a child who doesn't have words for the primary communication mode.
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Thursday, September 5, 2013

Overcoming

Sometimes you see something at the right moment and you feel as if many things in the world have lined up just for you.

I had a restless night as I was wrongly worrying about Jaycee. She'll been battling illnesses for weeks, and this mama is tired of seeing her little girl sick, unable to play outside, and unable to attend school. I was upset and anxious.

Then I saw the Overcomer video on GMA this morning. It was as if God was speaking to me on a morning when I was ready to quit and let fear and anxiety take over. I'm not going to quit. Watch it for yourself!

Mandisa's 'Overcomer' Music Video World Premiere: ABCNEWS.COM - The gospel star features Robin Roberts' recovery in her new video.
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Wednesday, August 28, 2013

The Monitor Effect

The last few weeks I have spent too much time staring at a screen. Not a fun screen, like a television or a computer. It's a necessary but annoying screen. It is the dreaded......oxygen saturation monitor.

If you have been reading my blog, you know Jaycee's been battling respiratory issues for literally 2 months now. She already has obstructive sleep apnea, which is treated with a bi-pap, and has asthma, so any hiccup with her respiratory system can turn into something serious or something that lingers on and on. We've had 3 trips to the hospital in the past 2 months. There are times in her life when things are crazy like this. But, she did have 10 healthy, hospital free months prior to all of this.

Back to the monitor, I have a love/hate relationship with this monitor. We got it a few years ago when she was having so many breathing issues. It was hard to be at home with her wheezing and deciding on if she was truly bad or if she just sounded bad. The oxygen saturation monitor has helped us easily decide whether or not we need to take her to the hospital. Under 90% (the red number), she needs oxygen and we need to get to the hospital. For that part, I'm thankful to have the monitor.

In 2011, this monitor probably saved her life. Jaycee was acting weird and we didn't know what was wrong. I hooked her up to the monitor just to help try to figure out what was wrong. Her heart rate (the green number) which is set to alarm when it hits 140, read 220! This monitor caught her tachycardia and we immediately rushed her to the ER where she was transported by helicopter to a children's hospital.

Sometimes, the monitor drives me insane though. If I see 91 or 92% during the day, it starts to worry me. I see that she's getting close to the 90% cutoff and I get nervous. Sometimes, a spot check to see where her oxygen level is leads to me checking her too often because I'm nervous.

Jaycee has been having trouble breathing at night lately, so she wears this monitor while she's asleep. Typically, the monitor is in her room next to a baby monitor. The receiver is in our bedroom. Throughout the night I'll hear the beeping. Sometimes, she alarms because the sensor isn't reading. Sometimes, it alarms because Jaycee has thrown the bi-pap off and her levels have dropped to 89%. I hate the 89% alarms when everything is fine yet she's dropped for an unknown reason. Fortunately, repositioning usually helps the number to go up and all is well.

Last weekend, we spent a couple of nights in a hotel. By the time, I lugged up the monitor, bi-pap, and meds, I was rethinking the trip. Since our beds were close together, her monitor was placed on my nightstand. Bad idea! Jaycee had a rough night. She started out at 90% with her bi-pap on. Not good... I just kept staring at the monitor wondering if she'd worked her way back up to the upper 90s or if she would dip lower and we'd have to go the hospital. It's hard to fall asleep when 90% is staring me in the face. I wanted to shove my husband who was peacefully snoring next to me knowing what her oxygen level was. Maybe his 13 hour shift at work helped him. Maybe that's what I needed!

Actually, what I need to do is to have faith and calm down. Monitoring her to keep her healthy is great. But if the monitoring is causing me stress (and it is), then it's not a good thing. I need to be able to separate the two and not get so emotional when things look shaky. Fear causes me to assume the worst will happen. Why can't I assume she'll get better and her numbers will improve? Why does my mind instantly go to the negative? That's the million dollar question. And that's what I'm trying to work on right now.
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Thursday, August 22, 2013

A 4 Year Old Miracle

Last week, my "baby" celebrated his 4th birthday. During our nightly prayer time, I often tell him that he was an answer to mommy & daddy's prayers.

Let's go back 5 years ago.....
Jaycee is a toddler and we're ready to have another child. I prayed and prayed to have the strength to get pregnant again. Medically, I had no reason to be scared. There was only a 1% chance of Down syndrome occurring again. I wasn't worried about having another child with Down syndrome. I was worried about other things. Sometimes it was a baby with a cleft palate. Sometimes I was convinced I would have conjoined twins.  I'm laughing as I type this. My thoughts weren't rationale. Fear had rooted itself in my soul and was trying to steal my peace and joy. Statistically, I knew things were in my favor.  But statistics don't mean much when you have a child who has defied a few statistics already.

I prayed for a healthy pregnancy. I had other people at different churches pray for me. This was even before I was pregnant.  Months went by and finally I had a positive pregnancy test. Around 7 weeks, we saw the heartbeat on the ultrasound. It was real. We were on this journey again. Then I started spotting. I did this with Jaycee so I was nervous but optimistic. At 11 weeks, the cramping and bleeding were obvious signs that this baby, whose heart was beating a few weeks ago, was gone.

I was sad, upset, felt ripped off, and discouraged. The first time I saw Jaycee after the hospital, she was holding a baby doll and I wanted to have a complete breakdown.

More statistics were given. This is a fluke, said the doctors. Many woman have them. You are fine to try again in a couple of months. My brain was telling me that 2/2 of my own pregnancies did not turn out the way I expected them. I prayed and cried and sought God. I tried to fight fear off that was telling me to never try again. 

When the time to try came, I told my husband that we just have to start trying before I chicken out. This time, we were pregnant again right away. I tried not to get to excited about it until after the first trimester. I was relieved a little after the ultrasound showed only 1 baby. No chance of conjoined twins! I held my breath the rest of pregnancy. I was happy and tried to think positive but there was still a small part that wouldn't be relieved until he was in my arms.

That moment came. He was fine. I was thankful. I beat my own statistics.

I write this to encourage you.... Don't give up on your dreams. Don't allow fear to keep you from receiving a blessing. Don't give up on God. So thankful for 4 years with my miracle.

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Wednesday, August 14, 2013

A Special House Tour


Today, I'm taking you on a tour of my little house. My house has differences than yours possibly because I have a special purposed child living in mine.



 
This is the door from our house to our garage. A few months ago, I posted the stop sign on the door for Jaycee. Given the opportunity, Jaycee will run out the door and never look back. It's a safety issue that she doesn't seem to understand. After watching an episode of America's Super Nanny, which featured a boy with Down syndrome running out of a house multiple times a day, I copied the stop sign idea. The Super nanny's sign read: Stop. Ask first. My sign reads: Stop. Ask mom.

Did the sign work? Well now I tell Jaycee to open the door and go out to the van and she won't. She'll wait by the door until I open it. I'm not complaining. She's just doing what the sign says!







Welcome to our kitchen/pharmacy. This is where we draw up medicine, mix laxatives, and crush pills. Bi-pap parts, nebulizer masks, and syringes are all cleaned here too.


 Here's Jaycee taking a nebulizer treatment in our living room/treatment area. Yes, our floor is littered with toys thanks to my son. Throughout the house, you'll find random things that serve a therapeutic purpose. Hence, the red exercise ball in the background, which we used this summer for gross motor activities.
 Welcome to my bedroom. (And my husband's) The monitor is on every night. At 7 years old, we still have to use a baby monitor from time to time. It's jolting to hear "beep-beep-beep-beep" through the monitor which means she's having an apnea episode. Under our bed, we store oxygen bottles that Jaycee uses in respiratory emergencies. Where do people usually store 4 oxygen bottles in a small house anyway?
Here's a shot from Jaycee's room. Her bi-pap mask is hanging off the bed ready to use each night. In the corner, there's a giant oxygen machine. I hate this machine! I had to remove toys out of her room to make room for this machine. That seems unfair, I know! We rarely use this machine because we use the oxygen tanks. But, our supplier is required to have 2 forms of oxygen at our house so we always have a back up.

Finally, this is Jaycee's messy closet. We don't have really have many closets in our house, so excuse the clutter. There's an oxygen tank in the front ready for an emergency. The Tupperware drawers hold a bunch of miscellaneous medical supplies: stethoscopes, medicine, nasal cannulas, sensors for the oxygen saturation monitor, nebulizer parts, tape, bi-pap masks, etc. This thing is crammed full of stuff we need to keep around. You'll also see bed pads and night diapers in the closet too. Needless to say, this closet is always locked.
 
So there you have it! There's our special purposed house tour. Hope you enjoyed it!

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Tuesday, August 6, 2013

10 Essentials for the Hospital

Well, it sounds like a broken record but....we spent the weekend in the hospital with Jaycee again. Thankfully this was a short admission. After all the ins and outs of the hospital over the past 7 years, here is a parent's top 10 essentials you will need while your child is in the hospital.

10. Tennis shoes: Don't make the mistake of wearing sandals or flip flops on your way to the hospital. I did this once and 8 days later in the hospital, my feet just plain hurt! You may look dorky, but walk out your door in tennis shoes.
9. All the necessary toiletries (soap, shampoo, etc.): After all the admissions now, I keep a cosmetic bag stocked with everything we need so I can grab it quickly in emergencies instead of trying to remember every little thing.
8. Extra clothes: This kind of goes without saying. I no longer pack clothes to serve as pajamas. I just wear something for 24 hours and then change. You don't have room to pack too many clothes.  And you often don't have privacy to change conveniently.
7.  Headphones: I have just discovered this as an essential! Headphones are perfect when you have a roommate that watches tv all night or you have a crying roommate.
6. Ibuprofen: For all the aches and pains when you aren't sleeping at all or sleeping in chairs and other odd positions
5. A laptop or kindle: I use these to update Jaycee's caringbridge website so that I can keep our family and friends updated. It comes in handy for movies or reading material when the admission is a week long. (You need something to do with your time.)
4. A Hepatitis Shot: Not really, but I feel like I need this after I shower in the parent lounge shower. Gross!!!
3. Your child's health history: Two years ago, I gave up trying to remember surgeries and admission dates and her diagnoses. I typed it all out and made a health history sheet, which I carry in my purse at all times. In an emergency, it's hard to remember everything!
2. Money: It's expensive eating in the hospital or at least it is at our Children's hospital. Never forget to grab some cash!
1. A phone charger for all the calls and texts
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Thursday, August 1, 2013

The Right Outfit

This morning something different happened. After Jaycee woke up and did her morning routine, she came in her room to get dressed like normal. Every day I pick her clothes out and lay them on the bed. She will put on what she can and I help her with the rest.

But today, she searched through and found the underwear she wanted to wear. Then she shuffled through her drawer to find just the right shorts to wear. Then she stood at her closet door waiting for me to open it.

"Are you picking out your shirt today?" I ask as I open the door to her closet.

Jaycee reaches in like she knew what shirt she had in mind to wear. I think to myself that if she picks out a matching outfit, it will be a miracle.

She pulls out a pretty gray shirt with pink flowers on it.

My daughter just picked out her first outfit by herself. It doesn't look too bad either!

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Thursday, July 25, 2013

Too much thinking in the hospital

We came home from the hospital this week on Sunday. Being in the hospital is hard for so many reasons. First and foremost, Jaycee is sick and worries about her health and future try to surface again. I spend most of my time in the hospital staring at a screen that displays her oxygen saturation level and pulse. I try not to look at the screen but I do and wrongly make predictions about when she will be discharged based upon her numbers hour by hour.

Most of the time, Jaycee handles being in the hospital well. But there are moments when you can see the sadness and frustration in her face. The nurse and I took her for a walk one day while she was still on oxygen. We were hoping the walk would help clear her pneumonia and get her coughing. But, mainly the walk made her mad. She thought she was leaving the hospital. She saw the entrance to the hospital and said "bye" over and over. When we told her no, she cried and refused to move. It felt great Sunday to put her shoes on and tell her that we were really going "bye" this time. She understood it too!

Being in the hospital reminds me of how different our lives are from most people. Jaycee's had a few surgeries and illnesses that have resulted in the front desk clerk, several nurses, and a few people in the ER to remember us by name. (That's never a good sign.) I am well aware that back home, Jaycee is probably the "sickest" person in her class and most likely her school. Most people can't relate to our hospital encounters. But when I'm at the hospital, there are countless other moms and dads wondering around with that same worn out expression on their faces. I feel like I'm not the only parent in health battles with their child. I'm reminded we aren't some rare case. There are many other parents here whose child is being poked, tested, discussed in rounds, and will most likely return to the hospital in the coming months. In fact, there are other children in the hospital who are much worse off than us and who will be in the hospital for a much longer time. When I have brief encounters with these people, I feel guilty for the complaining I've done. Things are bad, yes; but for other people, things are terrible. Sometimes, when I walk with Jaycee in the hospital thinking about how much worse another child appears to be, I wonder if those "worse off" parents have the same thought. But...maybe I just have too much time to think in the hospital.

We are fortunate to have a core group of people who support us in many ways whenever Jaycee is ill. Every message, email, text, visit, and gift is like a much needed boost to our souls. You can't go through things like this on your own. One message told me I was a strong person. I read this a few hours after I had a complete breakdown and yelled at my husband for commenting on my parking job. (We know we have stress induced arguments.) I don't think I'm that strong. I have to be a certain way because the situation demands it. At the hospital, I rarely see another parent crying. When I do, it's usually a few tears and not a full blown crying fit. I see many other parents "handling" the situation like I do. And let's face it, there's not too many good places to cry in the hospital. Once a few years ago, I found what I thought was a good place to go cry on the phone when Jaycee was in the hospital for RSV. I think 5 people walked by me in 10 minutes. I decided it wasn't a "safe" place to let my feelings out. I have yet to find such a place like that in the hospital, so the emotions stay in until they erupt out unstoppable at a hotel or at home.

The truth is that I have to be brave for Jaycee, especially now that she's old enough to read my reactions. There are times I break down. I like order and routine. The hospital admission makes my life anything but routine. I get scared for my daughter. I feel bad for my son who is 2 hours away. When he visits and we're alone, he tells me that "Sissy's really bad. Sissy's really sick." I scramble to reassure a preschooler that his sissy is fine. I tell him to pray for sissy.

 But I try to keep encouraging myself in the word. Sometimes, I have to read the Bible or put on worship music to keep myself focused. Otherwise, it's easy for me to go in a downward spiral that does my family no good at all. The Bible does contain my hope, peace, and promises that I can rely on. The Bible does contain the ultimate truth and those are things I try to stay focused on. Like this:

Acts 17:25 Nor is He worshipped with men's hands, as though He needed anything, since He gives to all life, breath, and all things. (NKJV)

Psalm 34:3-4  Join me in spreading the news; together let's get the word out. God met me more than halfway, he freed me from my anxious fears. (Message)

Galatians 5:1 Stand fast therefore in the liberty by which Christ has made us free, and do not be entangled again with a yoke of bondage. (NKJV)

Psalm 27:1 The Lord is my light and my salvation; Whom shall I fear? The Lord is the strength of my life; Of whom shall I be afraid?

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Wednesday, July 17, 2013

Going to the hospital with my special purposed child

Three weeks ago, we brought Jaycee to the ER for her asthma. It was a short 2 day stay. She was discharged but never got 100% normal.

Two days ago....Jaycee obviously is having difficulty breathing. She is bent over, which is always the position she takes when she can't breathe, and her skin is very modeled. Breathing is labored. I hate being at home alone when this happens. But, it's 9 am so my husband and the close family members are at work. I'm trying to give her medicine, call the children's hospital, and hook her up to her oxygen saturation monitor all at the same time. Next, I roll out the oxygen tank just in case we need it. I start running around the house grabbing items she'll need in case she goes into the hospital. I'm tired and panicked. I can't think. Three weeks ago, I was fairly calm and level headed when I was doing this but today I'm not. My 3 year old son asks me to play with him and read to him. I gently tell him "not right now, sissy's sick." But I want to answer him harshly and tell him to go upstairs while I'm being panicked but I stop myself. It's not his fault. It's not Jaycee's fault either. I can't control what happens but I can control my reactions.

I load the kids, the oxygen tank and monitor, the bags, diapers, and miscellaneous items into the van in a rush. I leave the house a mess. There are clothes in the washer and in the dryer. I have clothes drying on the clothesline. I have bills that need to be paid and checks that need to go to the bank. But, in an instant the busyness of everyday life halts. The only thing that matters now is getting my sick little girl to the hospital as quick as I can.

I make the trip to the hospital. I don't get far when I have to pull over and put oxygen on her. It's just 1 liter though so this isn't too bad compared to other trips to the hospital. It takes an hour to get seen in the ER after we arrive. She is immediately put on 2 liters of oxygen. She hates the ER. She remembers it. She doesn't want to get into the bed. She wants to stay in the stroller and we let her for the moment. She is given lots of breathing treatments and an x-ray. She cries a lot and says "mama" when she's scared. It makes me feel good and sad at the same time to hear that. An IV is needed. There are 4 of us holding her down so a nurse can put it in. I have flashbacks of other moments like this. I always say I'm not going to help hold her down anymore but I always do. I at least feel better if it's my hands she feels on her and my face she can see telling her that things are ok.

Hours go by in the ER, 8 to be exact. ICU or the regular floor is being debated and no one can decide. Finally, they do and we head to the asthma floor on the hospital. Jaycee recognizes this place and feels totally comfortable here. There are several nurses and staff who have taken care of Jaycee here over 7 years. My adrenaline is gone. I'm tired now. I'm in disbelief that we are here again and at the same time not surprised at all we are here given her symptoms in the previous three days.

And now.....it's been almost 48 hours since all this started at the house. Barney is singing about butterflies while Jaycee's droopy eyes are glued to Barney's every move. A cannula in her nose is giving her a small amount of oxygen. A sensor on her toe lets me know how well she's breathing. She is still sick but getting better. This is our 13th stay in the hospital for an illness together. I count myself fortunate to have another day with her smile and love in my life. I hope this is the last trip to the hospital but I am doubtful that it will be. I have written up Psalm 27: 1 on our dry erase board (The Lord is the strength of my life). We can keep going through these illnesses and hospital stays knowing where our strength comes from.

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Wednesday, July 10, 2013

The Person Project

About 2 years ago, I was trying to get to a better place in my life. My attitude was negative. I had been through so much with Jaycee's health that my main objective was to make it through each day without having a crying fit or crazy thoughts.  I was going through the motions of a Christian but wasn't feeling any tremendous spiritual feelings. I couldn't pray very well for other people because all the prayers I could muster up were about my family. There were times when someone would share a sad situation requesting prayer and I didn't even want to hear about it. I couldn't take on anyone else's burdens and pain. I knew it was the sign of a wrong attitude but I didn't know how to change it.

I was praying about how to change my attitude. Then I got my assignment that I have been doing ever since. I would have one person each week to do something for. It was my "person" for the week  to show some little piece of God's love, heart, or kindness. Every week since then, I have had a person that I have done just that. Sometimes it was a family member, friend, or someone I haven't spoken to in awhile. A few times, it was my husband. Sometimes, it was a stranger.

Most of the time, the "person" is clearly brought to mind either just out of the clear blue or sometimes in prayer. There have been times when a person discussed a situation in their lives that led me to the realization that they were the "person." There have been only a few times when it's the end of the week and I'm trying to think of someone or something to do.

I have done a variety of things over the past two years. Mostly, it's been a card, phone call, or email to someone to share a word of encouragement. Some nice notes, I sent anonymously. I have brought meals to those recovering from an illness or going through chemo. I have sent money or gift cards to people. Once I read about a fund being started for a family who lost everything in a fire. I didn't know these people but the fund kept coming into my mind. I realized God was trying to tell me something. If I have something I no longer needed (like my kids' clothes or toys), I would ask God if anyone needed them. For my husband, I have made him a favorite dessert that I normally wouldn't make or bought him a small gift for no reason. One time, I sent my 5 year old niece pictures of herself playing t-ball in the mail. She enjoyed getting mail.

Once, before my son and I left to eat at a restaurant, I knew I wanted our waitress to be my "person." I was going to leave the waitress a large tip--it was large given that my meal was less than $10. Before I went in, I asked God to seat me in the right section of the waitress who needed it. Nothing magical happened during that meal. But I did what I thought I needed to do. The tip was a sign to the waitress because no one would leave a tip that is larger than the bill.

In short, some things were large and some were small. I only write about these experiences so that you can have an idea of what I did. I'm not trying to brag. I was only being obedient.

The point of this assignment was to get me thinking beyond myself. When I get so wrapped up in my own problems and life, it's a very selfish way to live. There are people out there needing love, a connection to another person, and encouragement. If we are self focused, we miss opportunities to help others. Jesus told us to love God and love others. This assignment allowed me to do both. My attitude has changed and so has my prayer life. Maybe someone reading this will be inspired too! Go ahead and find your person!

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Wednesday, July 3, 2013

The Results of a Challenge

While Jaycee was sick last week, I had time to do a lot of reading. The Girl in the Green Sweater ended up being a quick read for me. (The movie In Darkness is based upon this book.) The story is written by a woman who survived the Holocaust as a child with her family & other individuals by living in the sewer for 14 months. The conditions were...well you have to read the book. But, the attitude of the writer was what impressed me the most. They experienced such disrespect and hatred for their faith. Her description of her attitude towards their experiences years later left me speechless.

As I read the book, I kept imagining how I would have responded in that situation. I can't imagine it nor do I have any experiences to even remotely compare to it. I thought about things I have went through in the past 7 years with Jaycee: the shock of her diagnoses, surgeries, illnesses, feeling uncertain about her future, battles with professionals regarding her care, etc. These experiences have resulted in me struggling with depression, anxiety, social withdrawal, and confusion. I have questioned the purpose of my life and my daughter's life. I have questioned my faith and whether or not my prayers were effective. I have wondered where God was when my child was seriously ill.

So as I read this book and compared her reactions to her situation to my own, I felt so embarrassed. This woman survived unthinkable living conditions and in the end did not become a bitter, angry, or hateful person for what she suffered. I cannot say that about myself.

Looking back on my experiences, it was such a waste of time and energy for me to be so upset about a baby and later a child who has access to great medical and educational assistance in America. I can't believe I allowed myself to get so beat down just because my life and my child's life took an unexpected turn into the world of special needs with pit stops into hospitals. I struggled for years with how to make sense of what was happening to us. Thankfully, I'm in a better place now mentally, emotionally, and spiritually.

But, still it makes me wonder how a sour attitude or bad perspective takes root? How do some people go through something totally horrible but maintain a good attitude?

I don't have all the answers to the questions. I can only challenge myself to live with more gratitude and happiness and to face situations with a can-do attitude. To live with the principle that God loves me and any bad in my life doesn't come from him; therefore I won't blame Him for those bad things. To challenge myself to see good around me even when it's so clouded up that it's hard to see.
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Thursday, June 27, 2013

Prayer for Lungs

Earlier in the week on Monday or early Tues. morning, I prayed about what I should blog this week. I got the idea to write the verses and a prayer I have been saying for Jaycee concerning her lungs. In the past few months, I have focused on prayer for her lungs since her asthma and obstructive sleep apnea have really impacted her health. So here are 2 verses I pray regularly.

As the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living being. Genesis 2:7

The Spirit of God has made me, And the breath of the Almighty gives me life. Job 33:4
             Lord, just as you formed Adam and gave him life, breathe into Jaycee. Give her strong breath all night and all day. Keep her lungs open and working perfectly as you intended them to. God, you are the source of all life and your breath sustains Jaycee. I don't have to fear asthma or apnea because ultimately her breath comes from you. Keep her airway open and let her breath come easily. Amen.

It's funny how God lines things up, preparing the way for our lives without us knowing it. God assured me about this blog entry just before Jaycee had a severe asthma attack Tuesday night. She went into the breathing "red zone" (blue fingers and toes, low oxygen saturation levels). We stabilized her at home before taking her to the hospital. She was in the hospital less than 48 hours, which is the shortest time she's ever had in the hospital for a breathing issue (pneumonia this time).

A hospital trip always does a number on me mentally. Fear tries to invade my mind and doubt tries to creep in. It tells me to give up, not to pray, to worry about Jaycee's health and future, and on and on. As I tried to go to sleep last night in Jaycee's hospital room, my mind started trying to give me a dozen reasons to be afraid when Jaycee goes home. I use to let these fears take me over and leave me spiritually immobilized. But I heard God tell me, "Stop. Stay focused. You can't risk being distracted by fear." I thought about this blog entry I was going to write. It was a confirmation from God to keep praying and pressing no matter what the circumstances around me are. So, here I am trying to be obedient and staying focused minute by minute and hour by hour.
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Thursday, June 20, 2013

Ripping up Pictures

My pastor talked about something at church Sunday that I'm still pondering. He talked about the pictures we create about a subject and how that leads us to pray a certain way. He gave the example of revival. Ten different people have 10 different pictures of what revival looks like. Some may think it's when dozens get saved, some view it as happening when big miracles take place, and others will picture revival as long wild services that last hours. He said that people will pray for whatever their vision of revival is instead of praying for what God wants to do. Then people will judge whether or not revival has come based upon those pictures we have. So he went on to talk about how we should rip up some pictures we have in our minds that prevent us from seeing God and praying the right way.

I started thinking about some pictures I have had to mentally rip up over the years. I had to rip these pictures up so I wouldn't be upset and bitter. I had to rip up the picture I had of a healthy baby that I prayed for during my pregnancy. If I hung on to that picture, I'd still be upset. I had to rip up the picture of the house I  thought I'd be living in. This may sound really trivial but when we got our house we thought it was our starter house. Yet 10 years later, we are still here with no thoughts of leaving. Jaycee's medical expenses have erased plans for something different. Our house isn't terrible but it's small. Every drawer, corner, and both closets are packed full. I'm not a collector or hoarder but it feels like it in this house! For awhile I got really agitated when I would put laundry away and would have to cram it in the drawers. I just got upset because reality was not matching up with my picture. Somewhere along the way, I ripped that picture up and became content with where I was. I don't have a picture of a different house now. If it happens, it happens; if not, that's fine.

This week I was thinking about the picture I have of Jaycee's health. I pray often for her lungs (asthma and sleep apnea) to be strong and have good breathing. This week God started dealing with me about my picture of her health. I have this fantasy picture that Jaycee's "good" health would mean there's no bi-pap needed for her apnea and there's no more inhalers for her asthma. My picture of a healthy Jaycee hasn't happened yet because she still needs meds and a machine to help her breathe well. There's still oxygen in her room for when she's having an attack. I look around and see she's not "healthy." But God has showed me that my picture is wrong. I'll never be thankful and grateful if that's the picture I've set for her. It's not that I can't prayer for her to be medicine and machine free one day but I can't let that prevent me from seeing what's happening now. Jaycee has had 2 colds this year and it never went to her lungs. That is highly unusual. I can always count on a cold to turn into more than just a cold. She has been hospital free for almost 10 months. That's the longest stretch she's had in 2 years. God is answering my prayer for her lungs to be strong and for her to be healthy. I just couldn't acknowledge God working because my picture wouldn't allow it. 

So I encourage you to think about those mental pictures you have and decide if you need to rip them up so you can see God moving in your life.
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Thursday, June 13, 2013

Saying "Dada"

Jaycee never babbled much as a baby. That was the first sign to me that something was wrong with her speech. She did babble "dada" around 10 months. We were so excited at first. But then she stopped and not much happened verbally after that.

She was diagnosed with childhood apraxia of speech when she was 4.5 years old. She wasn't able to speak, couldn't imitate lip or tongue movements, and couldn't imitate most speech sounds by themselves (example: s-s-s-s-s). Childhood apraxia of speech makes it difficult for children/toddlers to move their mouth to produce sounds like you and I do. Children with this desire to talk but they can't. Sometimes, they lose words. They might say a word once and never again. This has happened to Jaycee. She said "dada" a few years ago and then lost the word. It was never an easy word for her to say, so it wasn't surprising to me that she lost it. We have rarely heard it in the past few years.

Jaycee's verbal speech is slow to come. She relies on signs and her communication device to communicate.

Jaycee can say sounds produced by the lips well (m, p, b). That is why she can say "mama," "papa," and "bubba". All other consonant sounds are difficult for her. We frequently ask her to say dad but she signs it. She has given up trying to say it.

But on Sat., we asked her to say dad and she did!!!  "Dada," she said.  My husband and I looked at each other in disbelief. I immediately had her say it again and again. I wanted her brain and her tongue to remember how she said it. I didn't want her to lose the word. And so far, she hasn't. She's been great!

It's the perfect Father's Day gift to her daddy!!
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Wednesday, June 5, 2013

The Truth about "Bearing"

In the past 7 years, I don't know how many times I've had well meaning Christians tell me that God never gives us more than we can bear. I have heard it while standing in church asking for prayer. I have heard it in casual conversations. They say it with a smile and attitude of---well if you are struggling, you shouldn't be because God doesn't give you more than you can handle.

Every time, I heard that I wanted to roll my eyes and slap the person. I never did it of course and it's not a very Christian feeling I know. But, it's how I felt! I didn't know how to take that scripture reference and what to do with it. 

Come to find out.....The verse reference is actually 1 Corinthians 10:13 and it doesn't really say what people quote. It says, "No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." (NKJV)

As you see, this talks about temptation and not really about trials or burdens. I believe this is one of the most misrepresented scriptures out there. When it's misquoted to try to "help" someone in a crisis, it may have the opposite effect.

Looking at this scripture though, God is the way of escape. Here's how I view most things: Satan comes to kill, steal, & destroy. Jesus gives life more abundantly. (John 10:10) When I'm feeling overwhelmed in a situation, it is the enemy coming against me but God can be there to provide life to the situation.




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Thursday, May 30, 2013

What Pro-life Should Mean

I'm a firm believer that every baby has a right to life. I know there are many that share this belief too. This is not a post to convert people to become pro-life. This is a post to challenge people who are already pro-life. 

When you believe that abortion is wrong, then you believe that every child born with all sorts of medical and developmental challenges should be given a chance at life. I believe this. I believe the world we live in is full of diseases and conditions that God never intended for anyone to have. Yet, the world is full of evil and bad things because the world is not heaven-it's not perfect. Perfect souls are born in bodies that are imperfect. Regardless of your thoughts on this subject, let's just talk about what happens after a pro-life decision is made after a prenatal diagnosis. Then what....

Raising children with special needs (or special purpose as I call it) is difficult. Outsiders do not often know how to support these families. When my daughter was born with Down syndrome and a heart defect, I got more "I'm sorry" statements then "congratulations." We had a few people literally cry with sadness while seeing our baby for the first time. The attitude of most Americans is basically-anything outside the realm of typical is considered undesirable.

It's hard to know what to say and do in situations when a disability is involved. But I wonder how many people are pro-life champions but go on to look at babies and people with disabilities with wrong attitudes. I think if we truly believed every life is worth something and is a blessing, we would stop saying things like:
-I'm sorry your baby was born with ________.
-I don't care what gender our baby is as long as it's healthy.
-Maybe you miscarried your baby because something was wrong. You wouldn't want that would you?
-Maybe your miscarriage was actually a good thing in disguise.

Instead we would say things like:
-I know it's going to be hard because your baby was born with ____ but your baby is a gift. I'm here to help you.
-Congratulations on your baby.
-I'm blessed to be pregnant and blessed to have any child.
-I'm sorry you had a miscarriage and your baby's life ended abruptly.  How can I help you?

Maybe if people were truly pro-life, they wouldn't stare at people with disabilities. They would teach their children to respect and value all people. They would make an effort to reach out to families who are raising children with disabilities. People in church would be more willing to accommodate children with disabilities even if it's not convenient.

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Thursday, May 23, 2013

Kindergarten Graduate

My little Jaycee has officially finished kindergarten. Flashback to August 2012...I was on the verge of a mental breakdown. My baby girl was getting ready to start a new school with new teachers & I was nervous for her. How do you explain something like that to a child that can't communicate well?

She adjusted well to kindergarten and all the changes. I feel like a fool now for the way I worried. Jaycee made lots of friends at school. As a mom, you appreciate children who can love your special purposed child. When I see a child at school ask Jaycee for a hug, I'm thrilled. Jaycee's school did many things to promote acceptance for the children with special needs and it showed.

Jaycee has made some academic achievements as well. She has learned to count objects to five. She's learned to spell her first name. (Man, I wish I would have spelled her name JC). Jaycee learned dozens of sight words. She started to read simple 4 page books using her communication device. She's learned to say many new words on her device as well. It's been a productive year and she's enjoyed school.

And so, the school year that I was dreading has ended so quickly and my summer with Jaycee began this week. The next few weeks will be spent getting Jaycee adjusted to her new summer routine. I'm sure I'll have lots of things to blog about in the next few months!
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Friday, May 17, 2013

Saying I do and Meaning It

10 years ago today, I stood in a church next to my handsome guy and became his wife. We did the normal vows. For better or worse, sickness and health...  I think we both took those vows expecting things to go a certain way. I never imagined having a special purposed child. Honestly, the idea never entered my mind.

Through every up and down with my special purposed child, my husband and I have been together. He's helped me when I was worried about Jaycee's health. He's reassured me things would be fine when I was convinced that they wouldn't be. He's watched the kids from time to time when I just needed a nap! He's been there for me and I have been there for him. I can't imagine raising our special purposed child without him and his support.

So here's my top 4 pieces of humble marital advice:
-Sleep in the same bed. We always sleep together (unless someone is sick and willingly goes to the couch). Never send someone to the couch or the floor if you are arguing. It builds a wall.
-Never threaten divorce or leaving. Marriage vows are intended to be made forever. Joking or threatening to end the marriage puts seeds of doubt between the two of you. Don't say it!
-Realize that having a special purposed child can be stressful. Be honest about your feelings with your spouse and ask for breaks if you need them. Understand that arguments between the two of you in high stress situations are mainly due to high stress. Take a breath and discover ways to work through these times while supporting each other.
-Go to church together. You both need to have the same spiritual foundation and be on the same page. When a crisis arises, you will need your own individual faith to help you. When your faith is added to your partner's it becomes unbreakable.

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Thursday, May 9, 2013

Getting Free from Anxiety

My 7 year old daughter has had health issues for 7 years. Consequently, I have had inner struggles for 7 years. This has included depression, stress, fears, and anxiety. I've never seen a doctor for any of these but I know I have had them. I have had good times where I have had little or none of these inner struggles. And I have had rough patches where my work and everyday life have suffered. Sometimes, I was aware that I was struggling. Sometimes, I wasn't.

If you would have asked me six months ago, if I suffered from anxiety, I would have said no.  I would admit that I felt stress a little each day but I wasn't that bad. I didn't know how bad I was! The thought of taking both of the kids to McDonald's by myself was enough to get me anxious. (I realized later what I felt was anxiety.) I always had this faith-fear conflict. My fear said--Jaycee's going to run off. She might get away from you and get hurt. She's not going to listen to you and you're going to get frustrated.

Why did my fear say that? Because my negative experiences in the past left a lasting emotional impression on me. There's been times when I have simply let go of Jaycee's hand to get my keys and found myself chasing her through the a parking lot. It scared me. And I felt like a terrible mother.

But my faith said to be strong and not fear. I would be brave and decide to go to the store or a restaurant. I would feel good that I would be brave enough to go. Then that sneaky anxiety would pop up. As I would be driving or preparing to go somewhere I would think about the possible negative outcomes of this trip. I would get worried about Jaycee's safety and my ability to watch her close enough. My body would tense up. I'd be on edge. It's hard to explain this well enough to so that people can understand it.

Taking the kids out was just part of it. Jaycee's health scares was how it all started. There have been times that I have worried about her life ending. I have worried about her getting sick, being in the hospital, etc. Most people in my situation I think would be this way. When your kid has 2 open heart surgeries, 3 heart caths, strabismus surgery, 2 sets of tubes, 11 hospital admissions for illnesses -including 3 in the ICU, and several asthma attacks at home turning her blue, chaos and sickness become normal and almost expected.

At some point, even when Jaycee was healthy I couldn't enjoy it. I was convinced it was just a matter of time before something bad would happen again. I also became accustomed to life associated with sickness and life/death situations. It seemed odd to have a "normal" life where nothing critical happened. I didn't want her to be sick. I just didn't know how to deal with her sicknesses and then pick back up with my everyday life. There's so much to say about all of this and I don't want this post to take hours to read.

On New Year's Eve, as I was crying about something ignorant to my husband, I realized enough is enough. I have struggled with these things for 7 years. That is a long time...too long to live with so many fears and anxiety. I decided I would get help. A few months later, I found myself in a home getting 4 hours worth of prayer from people I trusted. Growing up in church, I firmly believed I could overcome all of my inner struggles through prayer and faith but I couldn't do it on my own.

The Bible says Jesus will be called Wonderful, Counselor, Mighty God, Everlasting Father, Prince of Peace (Isaiah 9:6). Jesus is the authority of peace. Peace is found in him. It is not found through calmness of circumstances. I believed that I could be happy if Jaycee was just healthy. But that wasn't true because I didn't feel better even when she was. It is a lie to believe that your peace can only come through resolution of your problems. Jesus is Peace. Therefore, true peace can be achieved no matter the circumstances.

By confessing some of my fears and getting encouragement spoke over me during prayer, I was able to get relief. Maybe I will get into the details of the prayer time in another post. But I will say that I have changed as a result of that prayer. About a week after the prayer, I could actually sit down and feel relaxed. It's been almost 2 months since I received spiritual help, I will say that today I am 80-90% better. I'm not perfect. I have wrong thought patterns established and I'm going to have to break the ones that are left. But I feel different. I took Jaycee somewhere the other day without worrying and obsessing about it first. I just went and actually enjoyed myself. It feels good to think positively again and not be bogged down with so much junk in my head. If you are having some of these same troubles, please find someone you trust and get help. Change is possible!
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Thursday, May 2, 2013

Filling an Empty Vase

Sometimes the simple things in life aren't valued until you lose them.

Jaycee's asthma has been an issue since she was less than a year old. We have taken some extreme measures to avoid possible triggers. I spend the money to run the air conditioner rather than open the windows, which allow pollen and dust into my house. Jaycee hasn't been allowed to get an outdoor pet (or an indoor pet) even though we've had many opportunities to own a cute kitty. I have disliked having flowers in the house; it only happens once or twice a year.

2011 was Jaycee's worst asthma/breathing year. It made me extremely paranoid about avoiding any possible trigger, although it didn't seem to matter what I did really. But since Jan 2012, Jaycee has only been hospitalized 2 times for her asthma. Things seem to be getting better. I am trying to relax a little bit and enjoy those simple things again.

My windows have been open a few times this spring already. It's nice to feel a gentle breeze not produced by something plugged in to an outlet.

Last week, I took my son on an outing to a flower shop. He loves flowers. He picked out a couple of flowers to take home and put in our vase that has sat empty for years. Flowers were displayed on my table, and I actually enjoyed them. I didn't view the flowers as a potential "threat" but saw their beauty. I put my nose close to the petals and smelled them. Elijah told his dad all about going to get flowers. It was a really neat experience. I'm glad she's doing so well that I can bring back some of the simple things in my life.
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Thursday, April 25, 2013

A Life Dedicated

April 23 is a special date for us. Back in 2006 on this date, we dedicated Jaycee to God at our church. If you aren't familiar with a baby dedication, I'll try to explain it. Basically, it's something the parents decide to do with their young child. We brought Jaycee up in front of the church and proclaimed we would raise her up in the Christian faith. The pastor said a few words. A prayer was said over Jaycee's life and our commitment to raise her up as a Christian. And boom--in just a matter of 10 minutes, we dedicated our first born child to God.

I remember at the time, I felt impressed to do this baby dedication sooner than later. Most people do this some time before their child's first birthday but it all depends on the person. I really wanted to do the dedication before Jaycee had her first heart surgery (at age 3 months) because I wanted those things prayed into her life beforehand.

Looking at the calendar this week, I noticed "Jaycee Dedicated" on the April 23rd slot. For some reason this year, I have thought about that dedication and what it meant. I promised to raise her up in the faith. I wonder if I have done well with that over the past 7 years and what else I can be doing to teach her about God.

She understands the concepts of prayer, church, and God. She loves praise and worship at church and in the car. (We only listen to Christian music...and occasionally the Wiggles.) She likes taking a $1 bill into church and putting it in the offering. She knows if she prays before her meals using her talker that she can get her food quicker. She knows "amen" signals the end of the prayer. She's heard me read the Bible to her all throughout her life. I started doing that when she was born. But, is that all enough?

I can think of many mistakes I have made. I have modeled panic and fear when she's gotten sick, instead of faith and prayer. I have not spoken scripture over her at times because I have been too tired or too lazy. I have read the Bible to her but does she know what the Bible is and why I do it?  Some of this is hard to know because of the communication barrier.

I've spent some time the last few days thinking about our every day lives and how God is reflected (or not reflected) in them. I want to live out that dedication I made. I want her to grow up knowing and loving the God we believe in.
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