Hurricane Season

Thursday, June 26, 2014

June 1 begins hurricane season in Florida. It lasts through November of each year. If you live in Florida, you know these dates possibly better than anniversary dates. I want to share with you a hurricane that is happening.

Yesterday and today I was overcome by God's grace and mercy for Everly and for our family. To honor Him and proclaim His glory, I must share how He has showered us with His love.

Yes, during our storm, during this difficult time, He has shown Himself and His love for His children in abundance.

See, God never says that we won't have times of trials, in fact, He tells us in John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

However, how we deal with it is the part we should focus on in our lives.

Don't get me wrong. I struggle with this just as much as the next person. I am human.

But God already knows this. He created me. You. Us.

He knows we can't...


...handle the troubles of the world without Him.

He is our rock.

Psalm 18:2 reminds us that "The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold."

We must believe that and run to Him when our world feels like it's coming apart. When the weight of life feels like it's too much to bear. When our troubles overwhelm us. When there is no light at the end of the tunnel.

When our daughter is limp and blue.

Yes, friends, we must go to Him in this time. We must praise Him. And, I pray that for you, in the calm of your life AND in your storms, want nothing more than to praise Him and shout His name. He is good all the time. We will not understand His ways because His ways are not our ways. We've read this popular verse in Proverbs 3:5...but stop and meditate on the words for a minute: "Trust in the LORD with all your heart and lean not on your own understanding."

He doesn't want us to "get" it. He doesn't want us to "know" why. He wants us to trust Him. That's it. Trust Him. Walk in faith that He knows our every need. His promises are real.

I want to share with you how He provided for our needs during our hurricane that still rages. So, let's begin...

Yesterday, Everly had her four month check up with our beloved Dr. Graham and her wonderful nurse Loraine. Towards the end of the exam, we all noticed that Everly's coloring wasn't right and she was very cold. Being that the room was cold and she wasn't yet dressed from her exam, we attributed it to that. We got a reading on the pulse ox and it was grossly scattered....70's to mid-90's in seconds. Once she somewhat pinkened up, we headed home to feed her and snuggle. Even as we left, we thought her color was off but figured it would come back soon.

Immediately upon entering our house, a mere 5 minutes from the doctor's office, she and I sat in the rocking chair to prepare for her feeding. She was wrapped snug in a blanket and I could see her color was still not going back to normal. In fact, her color was beginning to take on a dusky hue, the scariest of all colors on human skin. Her legs and feet were cold, her head was cold and her eyes were semi-closed. I began to call out to Jimmy that we needed to take her back to Dr. Graham's office. By this time, it was 5:25 and I was sure the office was closed but praying someone was still there. We stumbled to the car, pulse ox cords and oxygen tank in tow, carrying, by this time, a limp little baby t the car. I was trying to keep oxygen on her, hold her and talk to her all at once. She was not aware of me or her surroundings. She didn't move nor cry. Her lips had turned white and her face and skin a nasty sick color. She did not look like my sweet baby Everly. I remembered telling Jimmy that we were losing her. I remembered crying out in panic that he had to hurry because she was leaving us.

What seems like an eternity later, but in reality I know that it wasn't, we made it to the stop light minutes from our house. As we waited to turn, I thought about her in those moments and had to remember who was in control. God has his hand on Everly. God will care for her...whether it is to bring her home to Him or whether it is to keep her in her earthly body a while longer. But either way, I must walk in faith. So, my panic turned to calm. My hysteria changed to quiet. I began to pray over her. Tell her each family member's name and how they love her. Tell her how much her Heavenly Father cares for her more than we could ever. I wanted to trust in Him and I did.

Let's push the pause button here. I did say earlier that I am human. So, I want to point out that while I was handling it in the car when we arrived at the pediatrician's office, the reality of the situation hit me again. Yes, I did cry and yes, I temporarily went into panic mode. I'm not going to lie. However, through God's grace and mercy, He placed the right people in place at the right time for two reasons. Now push play.

As we pulled into the parking at Dr. Graham's office, I knew there was a very good possibility there were gone. It was 5:30 after all. Yes, no surprise, the door was locked. However, the receptionist saw us at the door and called for help, I guess, because as she opened the door Dr. Graham, Loraine and LeeAnn all came rushing through the hall to meet us. Dr. Graham calmly took my shoulders and walked us to an exam room, all the while speaking calmly that it would be okay. She took Everly who was still very disoriented and layed her on the exam table and proceeded to check her out.

She told us that it sounded like she had had a seizure. In my naiveté, I thought that a seizure was when a person started shaking uncontrollably and vomiting. This is not at all what Everly did. So, it was a complete shock when she told us that. As I have since found out, there are 40 different kinds of seizures.

After some time, Everly's color returned and they checked all her vitals which were good. I'd like to mention here that Dr. Graham had a patient she was seeing and very kindly told them that she would call them later. If you were that patient and reading this, thank you for understanding. When she seemed stable, Dr. Graham asked if we felt comfortable heading home with Everly. We did as it seemed she was out of the seizure.

I hugged each of our angels and expressed our thanks...really words were inadequate. Then Dr. Graham said the following: "I'm not on call tonight but I will tell the service that if you call, they are to call me at home."

Yes, that is what she said.

No joke. I know what a big deal that is. She was NOT on call. NOT her responsibility. I love that woman!

The overwhelming feeling I had knowing that God orchestrated this brought me to tears. Not of fright but of pure joy and love for Him.

As we drove home, Everly started sticking her tongue in and out very rhythmically. She was turning her head side to side, not focusing on me, looking this way and that. The tongue thrusting continued. Feeling uneasy and uncomfortable, I videotaped 15 sec of this and sent it to Mary Ann, Everly's therapist, who lives on the street behind us, to ask her what she thought.

Yes, the street behind us. Mary Ann simply texted back, "Want me to come over?' Again, tears of joy that God has interceded and placed the right person in the right place for Everly and for us. Within minutes, this angel arrived at our door. She knows Everly and knows her behavior and she agreed that it was not normal for her. She told me that it was another seizure. Yet a different one from her earlier one. Again, I was surprised to hear this. Mary Ann stayed a long time talking to me, watching over Everly and just being a calming presence and such a blessing.

I called the answering service and they told me that Dr. Graham had instructed them to call her. She promptly called back and determined that yes, Everly was seizing again. We went over the options at that point and decided to ride it out at home with the plan that she would call a neurologist in the morning.

 Getting some snuggles while I went to the restroom. She knew it, too!

My mom came over about then after having worked all day and drove an hour over to stay with us for the night. My dad was already here and stayed, too. They were such a help with the boys as Jimmy and I stayed with Everly who was still having the seizure. They acted as second parents to the boys while we brought Everly into the bedroom for peace and quiet to try to calm her for the night.

Now it's Papa's turn for snuggles.


As for the rest of our night, it was rather up and down. Everly had periods of drifting sleep and had periods of tongue thrusting. She was awake for some periods just looking around but more of a blank glaze really. She had several very dry, very pasty bm diapers that didn't look right. Her mouth seemed extremely dry and her behavior was uncomfortably odd. This continued throughout the night until about 5 a.m. when she finally hit a restful sleep period.

As I was feeding her during her 8 a.m. feed, Dr. Graham's office called and told us that they were able to get us into a neurologist for the next day (Thursday). I know from my experience in making doctor appointments, quick ones with a specialist are far and few between.

Then another shocker for me...Dr. Graham called to see how Everly did during the night and how things were right then. Since we didn't have an appointment with neuro until the next day, I didn't think we'd see a doctor to go over anything until then. So, what a blessing to have our trusted angel call us! We went over plans for the day of how to best care for Everly at home as she knows that is very important for us. She instructed us to rehydrate her with Pedialyte at specific intervals, allow her to rest as needed since the ongoing seizure probably wore her out.

We were able to get an emergency prescription from hospice for a medicine that can be used to stop a seizure in its tracks to keep on hand. Having it available and knowing we wouldn't have to go to an ER is a huge blessing and relief. I know I have help for her when and if it is needed.

At lunch and at dinner, Dr. Graham called back to see how she was doing. For real. I love her. I honestly love her. She was sent to us by a God that loves and cares for us. She is what we needed. He knew this. He is so good. No, she can't fix the problem per say but she gave us everything we needed.

Remember back in January when our old pediatrician dropped us because of the complexity of what we thought then was Everly's heart condition? Well, God knows what He is doing. So, that "closed door" then turned out to be closed so He could open another one that was better for us and He knew it. I wouldn't have switched unless I had to. He made it so.

When God couldn't show up anymore than He already has, this happened.

Late Wednesday afternoon, I received a phone call from a friend I hadn't spoken to or run into in a long time. I love catching up with old friends and so it was nice to see her name pop up. When I answered, I could tell she didn't know about Everly's current medical issue. She said she doesn't do Facebook which is why as I had posted updates throughout the two days. She immediately started to fill me in on seizures and what else I could do for Everly.

Then, she simply asked if I would like for her to stop by after work and check her out.

Did I mention she's a doctor?

Yup. A doctor. A walking, breathing, practicing doctor of medicine. An M.D.

So, a little after 6:30 p.m. Dr. Pilar Cekan, my angel friend and sister-in-Christ, showed up at my house, stethoscope in hand. It was like straight out of modern day Little House on the Prairie with an old fashioned house call. First, it was just wonderful to see her again. Her spirit and love of Christ precedes her so it's always a pleasure to run into her. But this visit was even more special. She came because she loves. She cares. She came because she's a daughter of a God who prompted her to call and she listened to that prompting.

She, just like our Dr. Graham, looked at Everly lovingly and cradled her in her arms. She held her as if she were hers and I knew that we were so loved by both of these terrific doctors. Pilar gave our sweet baby an exam and said she sounded good and talked some medical stuff. Thank you, God! Then she we spoke about the fact that she even called today and we both shared some tears of joy of God's goodness.

And He is, isn't He?

Guys, we are ALL going to go through these storms.

To put it in terms my Floridian friends will relate to, some are more Category 1 while others will be more Category 5. Either way, they can do damage if we let it. If we don't put our boards over the windows. If we don't pile up sandbags. If we don't prepare in advance. Damage will devastate us.

We have what we need in Him. He will protect us from every storm. He will cover and shield us. We must just trust in His plan. Even when it's a Category 5 storm.

We must walk by faith that His goodness is all we need.

We must walk by faith that His promises are real.

We must walk by faith that He will rescue us from the hurricane if we trust in Him.

I trust in Him. Do you?

With love and appreciation,

Crystal"We are pressed on every side by troubles, but we are not crushed and broken. We are perplexed, but we don't give up and quit. That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won't last very long. Yet they produce for us an immeasurably great glory that will last forever!" Matthew 11:28-30 (FYI: Tributes made on Caring Bridge do not go to Everly.) (Check here for more frequent pictures and updates on Everly.)

We thank you each for your intercessory prayer on our behalf. God hears you and God honors you. We know that your prayers are working and we love you!

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