Tag Archives: medications

Fear Not

On a recent Sunday afternoon Andy and I were preparing dinner while Katie tube fed in the next room, Drew and Lexi were in Huntsville enjoying spring break with their Nana and Papa. I noticed Katie was unusually quiet so I went to check on her. When I entered the room I saw her limp body slumped over and her head lying in a pool of vomit. Her eyes stared straight through me, instantly I knew it was happening again. But this seizure was different, she was not convulsing, but she was breathing and not responding so we could only assume she was having a seizure, we went into action to administer a new “rescue” drug and call 911. The very familiar paramedics quickly arrived and we were off to the hospital. As I sat in the front seat unable to even see her, my fears ran wild. Once at the hospital it took 2 hours and several IV medications to finally bring life back into Katie’s eyes. But my thankfulness quickly turned into extreme anxiety.

Over the last 10 months our precious Katie’s seizures went from short and mild to intense and severe. Now they last hours, she has been hospitalized 5 times and put on a ventilator twice.image (19) - Copy But this time was different for me, I left the hospital with more than just a new seizure medication for Katie, I left with a fear I’ve never felt before. Once home I couldn’t sleep, I would lie awake for hours struggling to catch my breath because anxiety was taking over. The “what if’s?” are just too much for me to handle sometimes. We purchased a new video monitor which I thought would help, but instead I just stared at it watching her every breath. I continued to pray, but when you are consumed by fear it literally takes over. But after about a week I have finally calmed down and let God show me the way. IMG_7697 (1)

“Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you or forsake you.” Deuteronomy 31:6

God wants me to rely on Him for everything, so isn’t having fear the same as telling God, “I don’t trust you!”? Fear results from me thinking I am in control. “What if we miss a seizure and don’t get her to the hospital in time? What if I administer her emergency medication wrong? What if I forget one of her 7 daily medications or get the dosage wrong?” Those are real fears, but I have to let go and trust that God is in control. When I live in fear, led by anxiety, I can’t really live at all.

“Therefore I tell you, do not worry about your life, what you will eat, or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span?” Matthew 6: 25-27

No, fear and worrying actually shorten our lives. I have to do all I can to make sure I take care of Katie. I need to always watch her, hence the 3 monitors that are now in her bedroom, make sure her medications are administered properly and I have to sleep with one eye open so I don’t miss a thing. But I don’t have to live in fear, there is a difference. Prayer and trust in the Lord will get me through this stage of life.

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7

I am a walking example of this verse. A week ago I was in a deep dark hole, walking around like a zombie, just going through the motions because my thoughts could not stray away from what our lives had now become. Depressed about the fact that things somehow changed with this seizure, reality had set in and our way of life had to become much more seizure centered. My thoughts focused on when the next seizure would come and would it be worse than the last one. But then I felt God’s peace.

“Peace I leave you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27

It is difficult to put it into words, but I know God has got this. He is the one in control and when I rely on Him the feeling that comes over me can’t be described. It’s the exact polar opposite of anxiety, it is God’s love holding me when I can’t hold myself.20141019-DSC_0416 - Copy (2) Katie is the most perfect child of God and I know no matter what happens on this earth God holds her too. So my fears of the worse are really pointless because while God’s plan may include a few bumps along the way, He is her ultimate destiny and that is all that really matters.

True Beauty

Andy and I recently took a much needed beach getaway. On this trip, I rediscovered something I so often lose sight of, the true meaning of beauty. One thing I learned a long time ago is that in this world of special needs parenting time away is crucial, time to refuel, time to reconnect, and time to notice the things we miss in the daily grind.

image1 (6)As we sat on the beach bundled in coats in the chilly January temperature, I looked out at the ocean, the calm serenity of the water meeting the sand and thought, this is absolutely beautiful. God gave us so much beauty in this world and I’m usually too busy to notice it.

“Hearken to this, O Job! Stand and consider the wondrous works of God! Do you know how God lays his commands upon them, and makes the light shine forth from his clouds? Do you know how the clouds are banked the wondrous work of him who is perfect in knowledge?” Job 37: 14-16

Then I looked to my left to see the beautiful man that God gave me specifically for this journey. image2 (6)So often I take my frustrations out on this man and he loves me anyway. I also overlook his inner beauty as I rush to get a million things done in a day. But as we sit side by side on the beach I am reminded of his precious soul, his constant smile, his sense of humor, his strong voice that always calms me when the world is crashing in around us. In this world I am most thankful that God is very much alive in my husband.

“You are all-beautiful, my beloved, and there is no blemish in you.” Songs 4:7

As I continued to relax I was also reminded of the beauty in my family and friends. My sister and brother in law graciously gave us their beach condo for the weekend. My friends pitched in to get Lexi to her school open house, cheerleading practice and girl scouts. image3 (5) And my adorable dad was so excited to take her to the daddy daughter dance in Andy’s absence. My in-laws drove a total of 8 hours to and from Huntsville to take care of Drew and somehow kept the wild man in one piece. And our family there pitched in to entertain him. So many people gave of themselves so we could get away.

But the beauty that brings me to tears is my mom and her love and devotion to our precious Katie. This job was not meant for someone of her age (sorry mom, but at least I didn’t give a number). My mom was very nervous as I explained medication dosages, feeding tube schedules and how to strap her wheelchair. She’s done these things a million times, but to be the sole caregiver is a big task. All weekend she lifted her, changed her diaper and did absolutely everything for her just so we could get a break. She is so very beautiful to me.

I so often forget that beauty is not found in those 5 pounds I need to lose, the perfect skincare regimen, or the cute pair of “skinny” jeans found on sale at Belk. No, beauty is so much deeper, but in this fast pace life true beauty gets overlooked.

“Your adornment should not be an external one: braiding the hair, wearing gold jewelry, or dressing in fine clothes, but rather the hidden character of the heart, expressed in the imperishable beauty of a gentle and calm disposition, which is precious in the sight of God.” 1 Peter 3:3-4

smileWhen people look at Katie I see them recognize this beauty. They always smile ear to ear not because her hair is perfect or her clothes are adorable (quiet frankly, sometimes she looks like a hot mess) but because beauty shines from her soul. We see this so perfectly when we take her to communion, as we push her wheelchair back to our pew after she has consumed the body of Jesus Christ, people’s eyes just light up as if she is the most magnificent sight.

As I said earlier we all need breaks, we need time to stop and take in all the beauty this world has to offer. It is easy to feel guilty for getting away, for asking others to do your job for you. But in this, you share beauty with them. The beauty of giving and helping.

“Give and gifts will be given to you; a good measure, packed together, shaken down, and overflowing, will be poured into your lap.” Luke 6:38

When we stop the crazy rat race of life and take time to recognize what is beautiful in our lives we realize what beauty really is. I believe true beauty is God, and it is seen most perfectly when we allow Him to shine through us.