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'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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