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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.

The Roller Coaster Ride of Life

God blessed us with another pregnancy. We were excited, but nervous. Then after just a few weeks I had a miscarriage. The on call doctor said there was likely something wrong with the baby and it would not have developed properly. She did not know about Katie. I was beyond devastated! The only thing I could think was, this baby had the same thing Katie has, but so severe it didn’t make it. To me that meant NO MORE KIDS.

I spent some time mourning, grieving the loss of this child. I later heard a story on EWTN radio, a priest said that when we go to heaven any child we loose to miscarriage will be waiting for us. Since I never met this child I had never thought of that, but since conception that baby had a soul. That brought me great comfort, I can’t wait to meet her or him someday.

I also grieved the loss of hope for the typical child I wanted so badly.  My desire for a typical child was not to fill a void, Katie filled my heart. image (12)I loved her so deeply, I can remember worrying that I couldn’t love another child as much as her. But I just knew our family was not complete.

After seeing my regular OBGYN, she reassured me that early miscarriages were so common and it was more likely a progesterone issue rather than developmental problems. After waiting the required 3 months we quickly got pregnant again. I look back in amazement, how did we have that courage. God is the only source of that peace because everything on earth said no.

“Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths.” Proverbs 3:5-6

If we rely solely on this world we will never make it, because in our worldly minds we have no idea what is possible. Our minds are so closed off to only what we see, what we know. But with God there is so much more, so much hope and so many beautiful opportunities.

During my entire pregnancy God gave me comfort and peace. I felt in my heart, “Whatever God has planned for this baby I will accept.” The first part of the pregnancy was smooth other than gestational diabetes which restricted all the yummy foods and required daily insulin shots. A small price to pay for a healthy baby. But when week 33 arrived, the same week Katie was born, I was admitted to the hospital for low amniotic fluid. Walking from the doctors office to the hospital was so surreal. My mind was racing, but since the issue was different from my pregnancy with Katie I felt okay. I ended up on bed rest for the rest of the pregnancy.

Thankfully we had so much help with Katie from our parents. I don’t know what we would do without their constant love and support.

image (10)In May of 2008, we were blessed with the arrival of Alexis Drew Crook one early Sunday morning. She was perfect in every way. I quickly realized I was wrong, instantly my heart grew bigger as I fell in love with my new baby girl. Lexi must have thought she was a rock star as we marveled at all the things she could do. Katie loved her too, I can’t explain it, but I knew from the beginning these sisters had a different love, a deeper love, one that would go beyond words spoken or hugs given, one founded by God for a special purpose.

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life.

Isadora Jamesimage (9)

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We grew into our not so normal life. We learned how to use a wheelchair, Lexi learned what seizures looked like way too early in life and Katie just couldn’t gain weight. At 5 years old she only weighed 25 pounds. After years of struggling with the idea of a feeding tube it finally became a necessity.

So we did it, that’s when I really felt like a nurse. Syringes, feeding pumps, extension tubes, a button in her stomach, it was all quite an adjustment. Not to mention the doctor read an x-ray wrong and did not do a procedure she needed, so at first she literally threw up everything we put into her belly.  I have never been hurled on so many times! Cleaning up vomit was as ordinary as cleaning toilets in our house. It actually became a dark time for us.

The part that no one told me, because I really didn’t have a special needs mommy mentor, was that just because you recover from one stage does not mean you’ll never hit the bottom again. I feel like this life is a roller coaster ride, just when you think you’ve made it, your seat goes flying down hill with no end in sight.

The feeding tube required a whole new way of life, since she vomited so much we could only feed her small amounts every 2-3 hours, which is basically what we still do. It makes leaving the house a challenge and for a long time we just didn’t leave. My anger grew again as I became bitter and jealous of everyone else’s life. We now had a typical child and I wanted a typical life. That was an emotion I didn’t expect. Before Lexi, I didn’t know what normalcy was so I didn’t miss it as much. But now I wanted to go and have fun outside of four walls that seemed to be closing in on us.

Just because you have a close relationship with God does not mean you avoid pain. With my stronger faith the depth of this pain just didn’t seem as bad. I knew I had gotten myself out before, I knew I could do it again.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gadly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:9

Next post the Roller Coaster continues.