Thursday, June 28, 2012

Pancakes, Seizures, and Joy

One morning a few weeks ago, I grabbed the camera and captured a moment of my three children together. 
They are seated around the kitchen table, all eating the same thing. Pancakes. The television is off. No one is whining. Well, at least not at the second that I snapped the picture. This seemingly ordinary moment is a blessing to me. Raising Lilli has taught me to recognize these moments, and be thankful for them. This simple picture of my kids eating breakfast together speaks volumes to me of miracles and answered prayers. It brings me joy to look at it, to think about the three of my children interacting. They are all feeding themselves. They are sitting together. Chloe talks, Josh is starting to talk, and Lilli listens, laughs, and takes it all in. I now know she is taking part in the conversation in her mind. I am so thankful to finally know this. She puts her hand on her neck, wanting to say something. I now recognize this meaningful gesture of "I want to say something but I can't get it to come out of my mouth." Despite her silence, she is a part of it all. She reaches across the table for Chloe and Josh. She wants kisses and hugs. She wants Josh to know that she thinks he is adorable and funny, and Chloe to know that she loves her. Since she cannot tell them, she grabs them and shows them her affection instead. I treasure this.


There was another moment that occurred at the kitchen table last week, that I did not take a picture of. In comparison, we do not generally want to remember stressful, scary moments. I was feeding Lilli dinner. Breakfast is finally easy, because she can pick up pieces of pancake with her fingers. Using a fork for dinner is still a challenge right now, and we help her. The other two children were already finished and had been excused from the table. Jasen was not home from doing clinic hours yet. Halfway through her meal, Lilli had a seizure. I was taken aback, because she rarely has a seizure when she is wide awake. Most are during the night, early in the morning, or afternoon naps. I also think she has never had a seizure during a mealtime. It was scary for me, even after all these years of seizures. But thankfully, Jasen was already on his way home, and the seizure only lasted three minutes. Three minutes feels like forever, by the way.

I read a quote in a book recently that I wrote down on a post-it note to contemplate later: "While I may not always feel joy, God asks me to give thanks in all things, because He knows that the feeling of joy begins in the action of thanksgiving." That is from the book One Thousand Gifts, by Ann VosKamp. (Disclaimer: I have not finished the book yet, and I do not necessarily agree with everything she wrote. However, I have enjoyed it so far and it has sparked some great conversations with others.)

Give thanks in all things. Then feel joy. What a crazy concept. It's easy to give thanks when good things happen. But the bad stuff? Kinda hard. Easy to give thanks for Lilli eating a pancake. Not so easy to give thanks for seizures. Wait, it says "give thanks in all things." Not for all things. Meaning, find something to be thankful about in the situation, even if it is bad. Is there something to be thankful for in Lilli having that seizure? Actually, yes. Several things, believe it or not. She had gone three months without having a seizure. I am thankful for those three months! This month has not been so great, with one each week. But up until June, she had not had a seizure since the beginning of March. That is really amazing. Looking at the bigger picture, her seizures have changed over the years. They are short. They are…different. I don't feel the need to go into detail about that right now. I will just say that even though they are still scary, they are slightly less scary than they were a few years ago. I am thankful for that. I am thankful that my husband was on his way home, and that I knew just what to do. I am thankful that I did not have to call EMS and go to the emergency room. I am thankful that sweet Chloe is not afraid anymore during Lilli's seizures. She is helpful and calm. We deal with it. She listens and does what I ask. I asked her to run and get the phone, and she was by my side with it in a flash. This brings tears to my eyes right now, but I am thankful for her.

For many years, I have kept a prayer journal. I only write in it every few months. On one page, I write down the things I am praying for, and the date. On another page, I write down answered prayers. Throughout the journal since Lilli's birth, I recorded specific things I was praying for with Lilli's eating abilities. For her to drink without choking. For her to eat solid foods without choking. For her to gain weight and be healthy. For her to feed herself. This simple act that most of us take for granted has been a challenge for Lilli her entire life.

I have also recorded prayer requests about Lilli's seizures. Her whole life, for her to have less seizures. For her to have none at all. As simple as that.

The most important thing about this journal is that I look back through it. Whenever I feel discouraged, it helps me see how many prayers have been answered faithfully over the years. And it reminds me that many will be answered in the future. To see Lilli feed herself cut up pieces of pancake…that brings me great joy every morning. When I look back through the journal, I get teary with gratitude for the blessing of her ability to simply eat and drink after many years of struggling with it. May I never forget what miracles God has done in Lilli's life. Because it really is a miracle that she can feed herself pancakes. When I think about her seizures, I am also thankful. Not that she has them, but for what God has done in her life and all of our lives through them. It is true, that God can take a bad situation and use it for good. This is true for Lilli in countless ways.

Once I wrote down what a neurologist told me. He said that the chances of Lilli growing out of her seizures is less than one percent. And all I could think about was that there was a chance. I still think about it. Once when Lilli was four, a therapist told me that statistics say if a child does not talk by the age of six, their chances of talking significantly decreases. We hurried to "beat the clock" and worked on communicating. But she did not begin to speak. When Lilli turned six, I thought about this. I decided to focus on that chance that she will still talk one day. I pray for it all the time. I know it is her number one desire, to talk. All I can think about is those children I have heard of who spoke for the first time at age 11, age 18. That it happens. There is a chance for Lilli. There is hope. Hope for miracles.

Yesterday, Lilli said "sh." Morgan sings The Wheels on the Bus, and she tries to get Lilli to do sign language signs and finish the line "The mommies on the bus say sh sh ___." Lilli is trying to make sounds every day. She learned a few new sign language signs. She did a bunch of things that made Morgan and I whoop and clap. Being thankful for these things brings joy. But being thankful in everything God is doing through this little girl who is working so hard every day just to simply eat and communicate, despite having seizures on top of many other challenges… that is a deep joy that I cannot explain. If you know Lilli personally, then maybe you do understand.

Be joyful always; pray continually; give thanks in all circumstances. Not always easy to do. In fact if you know me well, you might remember a time when I was not joyful. But I want to have joy in all circumstances. And I am learning. This is something to strive for, to find joy and give thanks in everything. This is where I find hope.

There is a great thing about hope. Anyone can hope for something when there is a chance. But God can do things even when there is no chance. So that means I can continue to hope for the seemingly impossible, and be thankful in all that God does along the way.

1 comment:

  1. This is really beautiful and inspiring Jennie. Thank you for sharing from your heart. Hope does not disappoint...
    p.s. I think it is sad when professionals give us dismal statistics about our children.