Tag Archives: seizures

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. 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.

“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

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“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. 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.

Get away, Satan!

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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. 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. Mickey 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.

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“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 for 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.

Gaining Perspective

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One early November morning I was fast asleep when an unfamiliar sound on Katie’s monitor woke me. It was a rhythmic squeaking sound…strange. I slowly walked to her room. What I saw was gut wrenching. Her tiny, 2 year old body was convulsing violently in a Grand Mal seizure. I screamed for Andy. What do I do?…What do I do? I picked her up and she was turning blue. Call 911!! I laid her down and blew air into her mouth, nothing, she just kept convulsing with her eyes rolled up. This sight, which would become so familiar to us, was horrifying! All I could think was, she is dying, everything has come to this, it is all about to end. Then her body stopped and she rested. By this time the room was filled with firemen and one said she likely had a seizure and is now in a postictal state. As my heart began to slow down I noticed I was wearing only a t-shirt and underwear…no pants! I was still wearing my big girl panties for all the firemen to see. I slowly walked to my room to get dressed.

At the hospital she slept for hours which was scary, we didn’t know if she would wake up and be her normal self. All of the sudden I realized she could do more than I had thought, because now she was just lying there and I wanted so desperately to see her precious smile. She had more seizures and stayed a few nights in the hospital. She did get back to her normal self and went home with seizure medication. I went home with a whole new perspective.

Perspective is defined as a particular attitude toward something: a point of view. For me it wasn’t a sudden moment, but I slowly started to change my perspective from, “Oh poor pitiful me, why did you have to give her seizures, God” to “Thank you God for sparing her life, for giving us all these wonderful milestones to celebrate”.

“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18.

I cannot speak to all tragic situations, because I know people go threw a whole lot more pain than this, but for my journey with Katie I can say it’s all about allowing God to guide my perspective. Facing the possibility of losing her helped me realize how blessed I was. The saying I always call to mind is, “It can always be worse”!

I finally realized God had been there the whole time, He was working so hard to help me put one foot in front of the other that I couldn’t see Him. God had carried me for so long and finally I felt loved again, like an old friend was back in my life. I began to see His gifts in my life. God brought us to a new church, Prince of Peace quickly became our family. There was a precious nursery worker who adored Katie, we could finally go to mass and pay attention. There was no special needs ministry and I struggled with that, then God said, “Why don’t you start one!” so we did. The church was wonderful and allowed me to do whatever I needed. We also started a Special Needs Sunday School program. It was such a blessing.

My heart was finally happy again, nothing had changed for the better, in fact things had gotten worse, we now had seizures, but God was showing me a new way of life.
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“A joyful heart is good medicine, but a crushed spirit dries up the bones.” Proverbs 17:22.

I am aware of the fact that sometimes depression can be much too deep, sometimes there can be a chemical imbalance that needs to be addressed especially after childbirth when your hormones are crazy out of whack. So please don’t feel bad if you just can’t get that perspective turned around. I’ll say it again, it is a process and it takes a long time and I did need medication a few times, but it never worked long term for me.

Katie was working so hard everyday. She learned to use a walker with assistance. She could walk straight, but needed help turning and she got tired pretty quickly. But she used her walker in the Mercedes Marathon walk at The Bell Center and we were so proud. She mostly crawled around to get to things she wanted. Katie became a master at activating music and light up toys…she amazes us to this day, give her a toy and she will figure out how to make it work in minutes. She became a frequent flyer as we took trips to Texas Children’s Hospital and Children’s Hospital of Philadelphia, two failed attempts at finding a diagnosis.

Will we ever know? I wanted a diagnosis so badly. I became quiet obsessed, spending way too many hours on the internet. If I could just come across that one piece of the puzzle, we would know. I longed to see other kids similar to Katie, get a glimpse at what her future may hold, hug another mommy who had been through exactly what I had been through. I did find friends in similar situations who were life savers. I cannot express enough that support from other “special” parents or others going through whatever you are going through is crucial!! But getting a diagnosis was not God’s plan.

In starting this blog I’ve had an “ah ha” moment. We still have no diagnosis today. As I watch other parents put all their passion behind raising awareness about their child’s syndrome and raising money for a cure, I think I should be doing that. But that is not God’s plan right now! If we had a diagnosis I would be so busy with that and not have time for this blog. This is where God wants my passion right now.

The other aspect of a diagnosis was in having more children. Without a diagnosis we just weren’t sure what to do. I had not yet mastered listening to what God wanted, I just kept questioning. If we had another child would it have special needs? Would this baby have more severe issues? Would that be negligent of me? What does the future hold? Finally we stopped asking and started trusting. I’ll write about that in my next post.