Source: The Truth about Nurses
Spring is finally here, and I am thrilled. The days are getting warmer and the trees are turning that hint of green that lets us know that winter is over. I am spending time getting my gardens ready for the flowers that will soon be planted. It feels like I am coming out of a cocoon to rediscover the outside world. That is actually pretty close to the truth. The sun seems bright as my eyes get readjusted, but I am so excited that the seasons are changing.
It has been a year since Carlee got so sick after a doctor made a very wrong decision to change her medicines. While people knew she was very ill, we did not tell many people about the severity. We stayed quiet, except to our closest friends, about the requirements that her care required. Basically, her brain was so altered by the medicine change that she was like an infant. We have spent the last year retraining her in normal life skills.
We had no doubt when this began that almost all other activities had to stop for our family. Her care mattered more than anything. We circled our wagons. Carlee could not handle anything loud or bright, so it truly became a quiet season for our family. We had to have our eyes on her 24/7, so Chuck and I had to be home most of the time to help each other. Many tears of frustration were shed, but shouts of joy also rang out with each step toward recovery.
The strange part is, as difficult as the year has been, I still can not say that it was a bad year. I can see such beautiful moments for our family over that time period. Colton has some major life changes, and we were able to be here any time that he needed to talk. Being still for Carlee allowed us to also be available for our son anytime that he needed us. We got a front row seat to see how God was shaping and changing Colton’s life. We could not be more proud of how Colton handled himself through this season.
The Quiet Season also brought the blessing of true friendship. Not everyone was comfortable seeing such a different version of our family. We could not help out others as much, because we were the ones in need of assistance. I know that I had nothing to give. It was amazing to see the true friends that stepped up and loved us anyway. The ones that came here, because they knew that it was hard for me to leave home. The ones who understood that a float in the pool day was all that I could give. It was enough. Those friendships blossomed. We know who loves us unconditionally,and we are forever thankful.
There has been steady progress with Carlee over the year. While she is not completely back to her old self, she gets a little closer every day. She is able to leave the house more and once again participate in life. The Quiet Season is ending. The music will be played a little louder, and I can see dance parties once again breaking out in the kitchen. We are beginning to adventure back into outside world. I think we all are ready for this.
I would not want to ever forget the incredible lessons that we have learned over the year. I know my worship is sweeter, my time with God more important than ever, my understanding in what an amazing father that Chuck is has grown, my bond with my amazing son has grown stronger, and I know, without a doubt, who my friends are. A reminder, once again, that there will be many battles, but many, many victories.
It is Valentine’s Day, so I am seeing lovely posts of gifts of flowers and chocolate. I love those things as much as the next girl. Bring it on! I think it is fantastic to see my friends celebrating love.
It has made me think a lot today about what true love is all about. When we move beyond the flowers, candy and cards. When life gets real. The kind of love that gets two teenagers through some unbelievably difficult years. In the span of a few years we had our baby suffer profound brain damage, a diagnosis of Multiple Sclerosis, and a broken neck…to name a few. Then we add the ups and downs of everyday life. What kind of love gets stronger over the years?
I can answer that question with ease, because I am married to a man who lives out a Christ centered love every single day. This year I saw that love as he stood by me as I fell apart after Carlee became so sick. He quietly reminded me of the love of God for Carlee and that He would take care of this situation. He encouraged my faith when I lost hope. Chuck stood beside me as we cleaned messes in the middle of the night. When I was at my whits end, he tagged himself in so I could take a break. That is love.
Love is also sleeping on the floor for three weeks so Carlee would not bother me during the night after knee surgery. It is keeping me with a constant supply of Oreos when I had no appetite. It is not getting mad even when I am a terrible patient.
It is the kind of love that I never have to doubt. It extends to our children, and I watch Chuck set the best example of the love of a father that I have known. When Colton was having a really bad day, Chuck, without hesitation, got in the car and drove to Chattanooga to be with him. Chuck does not have to work hard to show us how he feels. It is in every move he makes and breath he breathes. He is solid and faithful and kind.
I want to remind people that this kind of love still exists. Look for a partner that puts God first above all things. Look for someone who is kind to everyone. Watch for the person that will be the first to stand up when someone needs assistance. Our lives are messy, like everyone else. We get exhausted, frustrated and discouraged. Survival happens because the foundation is strong. It helps that our life goals are the same, our faith in God is strong, and that Chuck is a good man.
Today I walked out to my garden and stared in shock. I knew the weeds were going to be high, but I did not realize that we had lost all control. Due to rain, illness and busy schedules, the poor garden has been horribly neglected. I wondered, for a moment, if I should walk away and just buy my vegetables at the Farmer’s Market. The only problem with that plan is that it would make me a quitter. I am no quitter. Now the process will begin to restore order among the plants. To weed and till until the plants shine. I just have to keep in mind that all of the work will produce a wonderful harvest. That this garden will bring joy.
I can not help but think about how our lives the past few months resemble our garden. The events that have taken place were out of control. If you read my last post then you know that Carlee has been very ill. Her body could not handle a change in medication, and we did not know if she would ever recover. Fear and confusion ran wild as we sought experts for ideas on how to help Carlee. We finally know that it is time. Prayer and time. She has been making progress in returning to her old self, but it is not happening quickly. Actually, the more she recovers in some areas, the more we see how much damage has occurred. She is struggling with behavior, impulse control, fine motor skills, eating, etc. All we can do it begin the training and therapy that she had to go through as a child. All that matters it that we see progress. The rest is just effort and time.
I wish I could say that Carlee’s illness was the only challenging event in our family over the spring. Not even close. We felt like arrows were flying from every direction, and no family member was immune. At some point, we knew that all we could do was circle our wagons, hunker down and wait. We knew that God was still God through every new attack. We knew that either the situations would change or our family would adjust to the new normal. Staying down was not an option.
So for a while we looked a lot like the garden, out of control and a little hopeless. We slowly began getting things in order. Life moved on and laughter once again filled our home. There is no doubt that great lessons have been learned. We were reminded of the true value of our family and close friends. We were reminded that nothing matters more than our faith in God. He is our cornerstone. He is the healer of hearts. He is the giver of hope. He will take take the mess of our lives and somehow create a harvest. Of this I have no doubt. There will be many battles, but many, many victories.
I am not looking forward to writing this post. It will be too raw. I do think it is only fair to show the whole picture. Not only the days that I can have hope for a happy ending, but also the days where I can’t see anything but tears.
About six weeks ago our lives fell apart. Carlee’s neurologist had decided to take her off of one of her medicines that she takes for seizures. Around ten weeks into the process something went horribly wrong. Suddenly, Carlee became almost non-responsive. She was hallucinating and talking to the walls. We rushed her to the hospital only to be told, after extensive testing, that she was probably tired. We were sent home with no answers. Things went downhill from there.
Weeks went on with no change. Carlee refused almost all food and could only sit and stare all day. She would laugh and talk to the hallucinations but little else. Her doctors were doing nothing to help. The fear began to build in me like never before.
I wish I could say that I handled everything with a song of praise in my heart. That I trusted God and knew it would all go well. I did not. I started out that way, but fear began to take over. A gripping fear that we had lost our daughter due to a medical decision… for the second time in her life. I had two prayers that I could get out. “Help” and “Forgive my unbelief” were all I could say after a while. I came to understand that it is possible to cry all day. To have fear so strong that you can not get a full breath.
We finally had to make the decision to take Carlee to an out of state expert. Now try to imagine the day that we had to figure out how to get a hallucinating, uncooperative adult on a plane. It was a low point in my life. On the way to the airport I cried out to Chuck, “Who gets the fluffy life? I want the fluffy life, too!” It was all too much to take. There seemed to be no end in sight. I can remember feeling hopeless. It was a very dark day.
The doctor said he believed Carlee would come back, but there was no guarantee. Sitting in the hotel room later that night, God and I had a talk. I had to ask myself what if she stays like this. Is He still God? Do I still believe? In my broken state, my heart whispered, “Yes”. It was the only hope that I had. All of the “positive vibes” in the world could not help Carlee. The words of the doctor rang in my head, “We believe in the healing power of our Lord, Jesus Christ.” That was enough.
It is now a month later and we are seeing small changes every week. There seems to be a pattern of two steps forward and three steps back. I still have fear, but my faith is starting to return. Me without faith is so strange, because it is not who I am. I am so thankful for friends that gave me some of their faith when mine ran low. Thankful for people that just listened while a vented without giving me a lecture on how I was supposed to be feeling. This is far from over, and there are many dark days. I cry less and pray more. I am not yet the Unexpected Optimist, but I see her in the distance.
It still amazes me how so much can change in the matter of a moment. It was about
ten years ago Chuck went to mow the lawn. It is a big task, but he usually enjoys his time riding around and listening to talk radio. I still have no idea why that is fun. All it took was one wet spot near the ditch. One tire that lost its hold. One flipped mower and one broken neck. Due to the infuriating process with the insurance company, it took a few months to get the full diagnoses. He walked around with a broken neck for months. Let that sink in.
The solution seemed fairly straightforward. Find the best doctor around and fix the neck. Only we usually don’t get things the easy way. The first surgery failed. His body rejected the doner bone. Next was surgery two and three to take a bone from his hip, fix the neck with more hardware and his bone. That was a very bad week. We hoped it would solve the problem.
The neck is nicely held together, but the pain remains. People have no idea. I am sure that I don’t even know the full extent of the pain. Now is it all nerve damage and muscle spasms that he feels every day. Some days are better than others. Some seasons never seem to end.
I will have to admit that I have questioned God. Mean people walk around in good health every single day. I see them. Then I get to watch Chuck fight to do everything he can to continue to help people. Every single day. I have watched him struggling with great pain and immediatlely leave to help someone when his phone rings. I can not stop this, and I would not try. It is who he is, and the pain will not defeat him. He is a good man. A good man to the core.
We are in the middle of the tough season. After a break from the pain, it has returned with a vegance. I guess the optimist in me should say we are at the end of a tough season. I will have to give Facebook credit for helping me to keep the faith. As strange as that sounds, it is true. Posts from the “Memories” on my timeline have reminded me of times that I could not see a way out. That the solution evaded us at every turn.
There was a casual comment about Carlee being a challenge in the morning. Only Chuck and I knew the truth. The nature of Carlee’s brain damage added to puberty had turned our home into a war zone. Hours of each day were spent dealing with screaming, rage filled tantrums. I was covered in bruises and seriously thought that I would have a nervous breakdown. We had doctors and therapists all around trying to help. I begged God to help. It went on for years.
Now Carlee is pleasant 99 percent of the time. She laughs and easily complies with most requests (execpt taking a bath. No one is perfect). She is fun to spend time with, and I can not even imagine her behavior being as it was in the past. But I need to remember. I need to remember that God was faithful. No medical person could have caused this change. He was moving in our lives when we were too tired to see it. One day, we realized the tantrums were slowing down. Then they stopped. We got used to the new behavior, and moved on. I need to remember to praise God for moving even when it took far longer that I would have hoped. Even in my frustration, He was faithful. He is faithful.
So I will build the alter of remembrance. I will recall all that has been done for me, and I will wait for Chuck to be pain free once again. It has happened before, and it will happen again. Chuck has too many things to do for God. Don’t get me wrong, he will do good things even if nothing changes. He is a good man. There will be many battles, but many, many victories.
“I still remember the days I prayed for the things I have now.”
Answered prayer can be a tricky thing. In my experience it rarely comes in the form you are expecting. Sometimes we might not even recognize it for its true value for a long time. We had this experience a few years ago, and the memories still make me laugh. God really does have a sense of humor.
Chuck had just had his second and third surgery to repair his broken neck (in the same week). It had been a difficult and lonely recovery. Chuck lives to serve others, so people did not know what to do with a helpless Chuck. Most just left him a lone. Over time, the one change that broke my heart was the loss of his laughter. Laughter has always been such an important part of our lives, and I had noticed that Chuck rarely smiled or laughed anymore. He was in pain and confused about the turn of events his life had taken. I did what I knew to do….I prayed.
This specific prayer was not for a quicker recovery, but for laughter. I asked God to send Chuck someone to make him laugh again. It was so strange to see him without the usual sparkle in his eyes. Something was missing. In my narrow mind, I expected one one of his current friends to show up. Nothing new happened for a couple of months, and I forgot about even making the request to God. God did not forget.
One day we noticed a moving truck in the driveway next to our house. Two tattooed, pierced, leather-clad, wild looking men were walking up the hill. To be honest, our first thought was, “Good Grief…what kind of crazy neighbors are we getting now?” Wanting to be nice, and get a closer look, we walked over to meet them. To our utter horror, we were told that a rock star and his entire band was moving in. This could not be good.
Except that it was. It was very good. It was crazy, and messy and loud. Through jackknifed moving trucks, late night horse emergencies, spider killing missions, and many adventures something amazing happened. Chuck started laughing. He laughed a lot. Sometimes it was with the neighbors, and sometimes it was at them. Los Angeles folks tossed into the middle of the country in Tennessee is just really entertaining to watch. Chuck would take his new friend all over town and just laugh his head off at the response of the local people. It was all great fun.
It took me a while to realize what God had done. He had sent Chuck a friend that became closer than a brother. Someone who needed Chuck to not care who he was or what he did for a living. In return, he made Chuck laugh. He made Chuck feel needed again. This entire group showed us how to relax and enjoy life a whole lot more. It was a beautiful sight to behold. We watched our son gain confidence in himself, because a whole band was cheering his every move. We witnessed our daughter find people that loved her completely and without reserve. Our friends have since moved back to California, but that does not change the reality of what they brought to our lives.
I don’t know about you, but sometimes I need to be reminded that God’s ways are not my ways. To let him out of the box I put Him in and work out what is best for my life. To say a prayer in faith and let the answer come in in new and surprising ways. I need to look around every day to see if something has already been given that I have not even recognized. Sometimes what we need is sitting right beside us, and we just have to open our eyes.