Tag Archives: pain

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.

Hitting Rock Bottom!

Complete devastation is the best way to describe my emotions. What did I do wrong? If we had waited to have a baby, maybe this wouldn’t have happened. Did the diet coke I occasionally drank do this? Did I take the wrong prenatal vitamins? Why ME??? Since I carried her in my tummy I felt like I was to blame, something must be wrong with my genes. I felt guilty and wanted answers. Why and How are questions we often ask and I can say over time you do see glimpses of the answers. “I chose you because you were the lucky one, this is how she was meant to be for a very specific purpose on this earth” those are the answers I know now, but in the midst of grief I couldn’t hear that.

After the initial shock I got angry. How could God do this to me? I felt like I had lost my child. I was grieving for the loss of the perfect baby I had pictured in my arms since I was 10 years old. The baby girl I would pretend that my doll was as a child. I can’t imagine losing a baby, so I certainly don’t mean to minimize that. I look back and realize I was lucky to have her, but at the time I didn’t feel lucky.

Katie couldn’t nurse, so I pumped and gave her bottles (which was a nightmare because apparently my milk ducts were not down with that). At first, when we would give her a bottle she would suck and scream, we didn’t know why, I felt helpless. The one thing we do as mommies is feed our babies. I would sit in the rocking chair and beg God, “please let her take the bottle this time”. But she wouldn’t, she couldn’t, then I’d say, “how cruel you are God, you put this child on earth without the most basic ability”. My anger grew deep.

It is very difficult for me to talk about this anger towards God…I love Him so much now, I feel tremendous guilt! At the time I couldn’t see the gifts he was giving me, like the Occupational Therapist who helped us feed her. She told us Katie had an uncoordinated suck, swallow, breath pattern…translation…she was choking on the milk with every bottle (talk about Mom of the year). She taught us a technique to feed her and it went much better, but still I couldn’t hold her in my arms to feed her like a mom does with a typical newborn. And Katie cried ALOT! image Probably 60% of her waking hours and those waking hours were always at night, from about 9pm-5am. Andy and I took turns on night shift because I was still working in radio early mornings.  Between sleep deprivation and the helplessness you feel when you can’t soothe your babies cry, I think we were absolutely losing our minds, it was a very dark time.

Simple trips to the store were challenging because she hated riding in the car and spit up (that’s the nice baby term for projectile vomit) all the time. And the stares, I hate admitting this now, but I really struggled with worrying about what other people thought. That is one thing Katie has taught me…who cares!! But I remember one time going into a store and one of the workers said,”oh, your baby looks drunk” (Really, thanks, that’s the look I was going for). So I mostly avoided going out and became pretty isolated.

This is when I hit rock bottom. I was so mad, I would literally scream at God, it was in a very dark place. My precious, faithful mom kept saying just pray and it just made me madder. I felt so abandoned, I was begging God for help…not healing just help her take her bottle, stop crying, stop throwing up everything she ate, but it all continued. I pretty much stopped going to church, because I didn’t feel comfortable putting her in the nursery and she cried the whole time. image (1)We had her baptized, but rather than seeing God’s beauty I just got mad because she cried during the ceremony. I would never talk about this anger towards God if I didn’t hope it would help someone. This is so raw and difficult for me to write, but if one person feels a fraction of this anger right now, I want you to know it will pass. I talked to a priest and a counselor, but getting out of the depths of this was so much bigger. It was truly a process. I can’t say that this was the only difficult time I have had, but it was the hardest to get out of, because I couldn’t see the light at the end of the tunnel. All I saw was doom and gloom.

But it was time to put my big girl panties on and be her mother. I wish it were that easy, but I did have to put my emotions aside because I loved her and she needed so much. To be honest that is what got me out of bed everyday. We spent most of our time doing therapy, therapy and more therapy. Physical, Speech, Occupational, Vision, Swimming and more. There was progress, she sat up around 9 months,image (2) began to crawl around 2 years old, she learned a few sign language signs. I can remember our routine, she was my only child and I had quit work by this time so it was ALL about her needs. The Early Intervention therapists would come into our home and do therapy with us, they were literally angels that gave me so much hope. I know several of you are reading this right now…I hope you know that you were a major contributor to getting me out of that dark place. I could see a glimmer of hope. I was slowly starting to find my way.

Besides all of our therapy appointments Katie had at least 4 full sessions a day with me at home. I was pushing her so hard. I began to battle with the guilt, I have to be doing therapy all the time. The battle surrounded two things, what to expect and what to accept. We still had no diagnosis so we had no idea what her full potential could be. Not that a diagnosis tells you that, but you at least have a guideline of what others are doing. OLYMPUS DIGITAL CAMERAThis guilt continues today, I think it will continue until the day I die. I want to always do the very best for her, help her do all the things God has planned for her. But does that mean working her hard everyday,  all day or just loving her and making sure she knows God. I now know it’s all about balance. But finding this balance is not easy for any parent.

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Things were getting better, by now Katie smiled and laughed…oh that laugh…it was so contagious. I loved her so much. God had begun to show me (I began to listen) that life was no longer about me, I had a job to do and I was accepting the challenge.image (4)