Tuesday, July 20, 2010

Seizures = Hope?

Lilli had a seizure last night.
"As many times as we go through this, I never get used to it," my husband said afterwards.

Lilli's seizures are an important part of Lilli's story. Of our story as her parents. When Lilli was born, she stopped breathing twice right in the delivery room. Then she was whisked off to the nursery as they finished my c section. In the nursery, she stopped breathing again and the pediatrician diagnosed her with seizures. She was in the NICU for 11 days.
On the first day that we brought her home from the hospital, we had to give her seizure meds with a dropper. It took a half hour to get a teeny amount into her, and by the time we finished we were both sweating. This was horribly bad tasting medicine and she gagged the entire time.
Then came 6 years of scary, drug-resistant seizures, lots of trips to the ER, 3 different seizure drugs with awful side effects, lost skills such as chewing food and saying words, and an uncountable amount of sleep lost. One memorable nightmarish ride to the hospital I was eight months pregnant. It took 45 minutes to get there and Lilli laid on my stomach, limp, throwing up and seizing the entire ride. Lilli has a lot of issues, but I think my husband would agree that if we could pick one to be miraculously taken away, it would be her seizures.
We think we are on the right track with diet and chiropractic care. That combo seems to have lessened the severity and frequency of her seizures. So it's better than it was.

In a weird way, Lilli's seizures lead us to have hope. Hope that one year, soon, she will go all year without a seizure. Hope that she can be completely off seizure meds so we can see how she is, how she feels, who she is medicine-free. Hope that all of this is not for nothing, that it is for a purpose. Hope for heaven, and thoughts that someday Lilli WILL be seizure free there, and we will never have to worry about any of this again.
People may think I'm crazy for my faith in God, or narrow minded, or whatever. But in a situation like ours, what else can we put our faith and hope in? Certainly not the doctors, who put Lilli on one drug that ended up with such awful side effects that I call it "the worst year of our lives."

There is a verse in Romans 5 that says that "suffering produces perseverance, perseverance, character, and character, hope." I have thought long and hard about that verse.

Through suffering with our daughter's medical issues for the last 6 and a half years, we have persevered in trying to help her in as many ways as we can. As we have persevered through many therapies, doctors appointments, hospital visits, putting her on a special diet, and persuing better health for her, we have grown. I guess you can say it has given us more character, more wisdom, In experiencing all of it, we have come to see that there is only one way to live life in the face of great suffering, and that is to have HOPE. What is life without something to live for, something in which to have hope? We cannot cure our daughter, doctors and medicine and diets cannot cure. Only God can cure. And if God chooses not to cure her while she is on earth for His reasons, He promises she will be cured in heaven! So that is where I put my hope. My hope is in God's promises.

I hope and long with all my heart that Lilli's seizures will go away one day. It is possible. One neurologist told us that in Lilli's case, her chances of growing out of having seizures is about a 1 percent chance.

So we can hope for that and continue to pray for miracles.

Saturday, July 17, 2010

Invisible, anti-social mom

One reason I decided to start a blog is because I hope to connect with other moms of kids who have special needs. My desire is to pass on hope to others who are struggling. Everyone needs encouragement. Sometimes it comes best from someone who's "been there." I'm only six and a half years into this journey; I need hope to cling to everyday or I would drown in defeat and depression.

When Lilli was an infant, strangers couldn't tell. People cooed and strangers made nice comments about her, the norm for a cute little tiny baby.
As she got older I took her to places where you take any toddler; the library, the children's museum, the park. I quickly learned that I was in a catagory by myself. I started to avoid conversations with other parents I met. I knew that if I seemed friendly and open to casual conversation, the questions about Lilli inevitably came.

The defining moment of the beginning of my anti-social decision came at the grocery store. Lilli was in her infant car seat in the grocery cart. She was about 9 months old and still learning to sit up. I was engrossed in the shelves of stage 1 baby food (Lilli had trouble eating and choked and gagged a lot due to having CP). Another mom pushed her baby up alongside me and struck up a conversation. "Aww! She's so cute! How old?" It turned out that her baby was the same age as Lilli. He was sitting up in the cart by himself, and she was buying stage 3 food and Gerber Wagonwheels for him. That instantly depressed me. "Isn't it a great age?" she gushed. "Is she totally crawling all over the place, getting into everything?" She laughed.

Hardly. Lilli would not crawl for 7 more months, at 16 months old.
And here it is: I lied to her. "Well, yeah," I said, and began to push off down the aisle. It was all I could do to keep from losing it right there, and I didn't cry until we got in the car. I never realized how much it would hurt when I saw other children Lilli's age.

Now you might have the urge to criticize me or think how awful I was to lie about my daughter, was I ashamed of her? No. I was not ashamed at all. The pain in my heart of my precious little baby having seizures and developmental delay was too great. I knew if I tried to explain why Lilli was not crawling yet, that I would start to cry right there in front of a complete stranger. And really, do people really want to know all of that stuff when they are just innocently making conversation? It was me. It was the state of my emotions and my heart, still taking it all in and trying to bear it. I backed away emotionally and decided I just wouldn't talk to other moms, that's all.
Anyone who knows me must think I'm making it up, because I am not a very reserved, quiet person. But having Lilli changed me in ways I didn't expect. I started to feel secretly relieved when we were the only ones at the playground. I avoided eye contact with other moms when we were out so I didn't have to talk to them and explain about my daughter. As she grew, I noticed more that instead of strangers smiling admiringly at my sweet tiny baby, they stared with curiousity at my crawling two year old. And then stared with disgust at my chewing-on-everything (including mulch, rocks and shoes) three year old. I've had strangers stare with horror at 4 year old Lilli licking various things like shopping carts and hand railings (she likes metal). She went through a major hand-licking phase around age 4, ugh that was awful. I didn't LET her lick all these things, but it was a round-the-clock battle with her.

But after 6 years, I've gotten better. It is much easier for me now to explain about Lilli to anyone who asks. I think it is part my acceptance of her diabilities, and part time healing my heart. I have a testimony, I have an experience that others can learn from. I believe Lilli is the way she is on purpose, for a reason bigger than I can grasp. Having two more babies after her has helped. I can talk to other moms anywhere I go and make conversation about all of my kids. When I look at Lilli now, I don't see a child that's not like other children. I see her. I see Lilli, exactly who she is meant to be.

Friday, July 16, 2010

Meet Lilli

It is a good day when no one takes my full mug of much-needed coffee off the counter and carries it into the living room to play with on the carpet. Today was that day. Yesterday I lost two cups of the precious liquid to the secret coffee mug swiper. Yesterday I was not thinking and left it out in plain sight, instead of hidden. I only let myself drink one mug total, so one mug spilled is a tragedy.

I have three children, Lilli, Chloe, and Josh. Chloe is my 3 year old. She is SO 3. She asks me a lot of questions ABOUT my coffee but she doesn't ever touch my mug. Josh is my almost 5 month old curious baby boy, hands everywhere grabbing. But I know better than to let him grab my coffee.

My Lilli is the one. I don't know what it is about the full mug, or even the full glass. She is tall with long, 6-year-old arms and she can grab anything on the counter and run off with it. She is especially fond of certain glasses we have. When I take one out of the cabinet to get a drink, I have to make sure Lilli doesn't see it, or it's sure to be on my carpet within the hour. But Lilli knows when she's done something wrong. When she sees me upset and I say, "Lilli, you shouldn't have done that! Tell Mommy you're sorry!" She does.

But she cannot speak.

She leans in and touches the tip of her nose to the tip of my nose. And I know she is truly sorry.

There is so much to tell about Lilli. There is a traumatic beginning to her story and lots in between. But these details will have to come out bit by bit. What a long post that would be, if I were to start at the beginning! I think I'll just start at the easiest place for the time being: now.

Lilli is 6 and a half. She has cerebral palsy and autism. Years ago a teacher described her best: "Lilli is a mystery." She is an affectionate, beautiful, stubborn, surprising, wonderful mystery. I can't wait to tell you more about her.