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.

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!

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.

Prayer for Lungs

Earlier in the week, I prayed about what I should blog this week. I felt I should share the verses and a prayer I have been saying for my daughter, Jaycee, concerning her lungs. In the past few months, I have focused prayers for her lungs since her asthma and obstructive sleep apnea have really impacted her health. Here are two 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 my child. Give her strong breath all night and all day. Keep her lungs open and working perfectly as you intended them to be. God, you are the source of all life and your breath sustains my child. I don't have to fear asthma or sleep apnea because ultimately her breath comes from you. These things are not more powerful than you God. Let my daughter's airway stay 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. I started working on this blog entry just before Jaycee had a severe asthma attack Tuesday night. She went into the "red zone" on her asthma action plan (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 with her breathing still not perfect. I often let these fears take 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. This is me trying to be obedient and staying focused minute by minute and hour by hour.


For more like this, read More Prayers for Lungs.

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.

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!!

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.