Monthly Archives: March 2015

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.

Her Purpose

When Katie smiles ear to ear it is like a piece of heaven on earth. Her eyes lock with mine and she beams, she reaches up to grab me and the world literally stops. I become truly present in that moment because I know it won’t last long. image1 (1)

In these moments Katie’s eyes say so much. She is saying, “I love you mommy! I am happy! You are doing enough for me! I know you love me!” She is saying all the things I have longed to hear for 11 years. I always say, “I love you, Katie!” over and over because in that moment, when she is more present, that is all I want her to hear. These moments can only be described as God entering my world.

I was reading a Lenten devotional last week about the Transfiguration, it reminded me of these moments with Katie.

“After six days Jesus took Peter, James, and John his brother, and led them up a high mountain by themselves. And he was transfigured before them; his face shone like the sun and his clothes became white as light.” Matthew 17:1-2

Father Robert Barron says the bright white signifies a divine beauty that is only seen on occasion in this world.  To me the moments with Katie are divine beauty. photo (7) I am trying to describe these “moments” but the feeling that overcomes me is indescribable. It is one moment in time where everything just feels perfect, I feel consumed with love like I have never felt before. That is her purpose on this earth, to show us that greater things are to come, much greater than this world could ever provide. I know that is God’s love shining through my precious Katie.

Like Peter I want the moment to last forever, I  don’t want to go back to ordinary life where Katie is distant.

“Master, it is good that we are here; let us make three tents, one for you, one for Moses, and one for Elijah.” Luke 9:33

Peter didn’t want that divine moment to pass, but the passage continues with “But he did not know what he was saying.” Father Barron says it is not the point to stay in these mystical moments, instead…“It is to become radiant with divine light so as to share it with the world.”

So often children like Katie are discounted, overlooked and undervalued. God gives the world  image (18)special children for very specific reasons.  I would not have chosen this life 11 years ago, but today knowing what I know, I would. Yes, it is difficult, and sometimes at night I cry because of the extreme challenges we face. But way more often than that I go to bed with a grateful heart, thanking God for choosing me to be a part of His beautiful plan. Katie’s simple smile has a purpose, if we stop to notice her we soak up the message that God is great and eternity with Him is more than we can imagine, then we spread this divine love.

Get away, Satan!

aPlanning a trip to Disney World with a child with Special Needs sucked the life out of me. My sabbatical in writing is due to a Disney trance I’ve been in for a few weeks. My precious parents took my whole family on a very special vacation a few weeks ago.IMG_6186 I am happy to report it was incredibly magical, but I almost missed the magic due to the ball of stress that I became.

I was consumed with all things Katie in Disney World. How will we tube feed her in the park? What if she has a seizure? What if that seizures is as bad as the last two and we end up in a hospital far away from our own doctors? Will she get too overstimulated by the crowds? What will she think of the rides? How are we going to bathe her in the motor home? (Yes, 7 people in a motor home for 5 days.) Will the weather be too hot or too cold for her since she doesn’t regulate her body temperature well? Will our fast passes be at a good time for her schedule? Will she throw up in the park? (No, but Drew did!!)

Yes, I became that CRAZY while planning this trip. But all the worries washed away the second we entered the Magic Kingdom. The first thing we did was get in line to meet Mickey Mouse, immediately we were whisked to the front of the line so Katie didn’t have to wait. IMG_6005Mickey stopped down to say hello and Katie grabbed his hand and kissed his nose. We were all crying tears of joy, something about that moment was just so special. Then we saw Snow white, the line was short so we went to the end to wait our turn but the worker quickly got us out of line and escorted us to the front. I was scared to look up, afraid people at the end of the line were going to throw stuff at us, but instead they were all smiling ear to ear watching Katie, Lexi and Drew meet Snow White. At the parade we had a special seat and characters came right up to Katie to give her special attention. I commend Disney World for going the extra mile to treat children with special needs and their families extra special.

But when I got home I was still feeling anxious, I just couldn’t get myself back into the swing of life. Then I finally slowed down and realized I haven’t been taking time for The Lord. My focus had shifted from God to this vacation. I had missed several Bible Studies and I was not taking my daily quiet time, so I sat down to tackle my 20 or so devotional emails. And it was like a ton of bricks fell on my head to wake me up.

Father Robert Barron sends out daily Lenten emails to help keep us focused on this 40 day journey. The first one I read centered on the temptations Jesus faced in the desert. He had just realized His mission and faced some tough temptations, just like we all do every day. Just like I had faced, the temptation to put life ahead of God.

Satan used three temptations to try to ruin Jesus. First, as Jesus was starving, satan said turn these stones into bread. If He had done what was asked, Jesus would have had an immediate satisfaction to his extreme hunger. Father Barron says this is a very familiar temptation to us because society says if it feels good do it. We live in a time when no one wants to endure pain or even feel a little uncomfortable. We overeat because it tastes good, we overspend because shopping fills a void, we get wrapped up in vacation planning, and we ignore what God is saying in our hearts because our will just feels better.

“One does not live by bread alone, but by every word that comes forth from the mouth of God.” Matthew 4: 4-5

Father Barron writes, “When we give way to this temptation, it shuts down the soul, for the soul has been wired for God, for journey into the divine. When sensual desires dominate, those deeper and richer desires are never felt or followed.” So when will fill ourselves with what is comfortable we are never forced by the uncomfortable to turn to God.

The second temptation satan used was power. He took Jesus to the Holy City and made him stand above the temple and told him to throw himself down, if he was the son of God then He would be saved. The devil was testing Jesus, trying to get him to use his power of God for the wrong reasons. Barron writes about many of the great leaders in history and the ones today, often power comes to those who cut throats and step on toes. When we chase power for the sake of power, we allow evil to take over. Who doesn’t want power? It feeds our ego and makes us feel important. With that feeling of power it is easy to put God’s will aside for whatever keeps us in that powerful position. If every leader in this world today insistently put God’s will first when making decisions, this world would be a different place. Instead of seeking power, feeding our ego, we should humble ourselves realizing God is the only true power.

“You shall not put the Lord, your God, to the test.” Matthew 4:7-8

The third and final temptation in the desert was glory over God. He took Jesus to a high mountain that overlooked all the kingdoms of the world. Satan offered all of this to him in exchange for His devotion. We do this every day when we put our will ahead of God’s. Barron says we are called to be servants to God, which means we have to submit to what He wants. That can sometimes lead us down a tough path that we may not want to travel. But we have to listen and be ready to serve God not the world around us.

“Get away, Satan! It is written: ‘The Lord, your God, shall you worship and him alone shall you serve.” Matthew 4: 10-11

So as I refocused myself and prepared for the 40 days of lent I realize I had given into all of these temptations when I got wrapped up in my Disney planning. I allowed Satan to suck the joy out my life, I allowed him to persuade me that this trip had to be perfect IMG_6090for everyone and I was the only one who could control that. But in reality God is the only one with that true power. The smiles would have come regardless of my planning. But this is life and there are a million things that we try to control, lent is a time to say “Get away, Satan!” God is the center of my world.