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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