Sunday, November 25, 2012

Hope and Forgetting to Have It

If you know my six year old Chloe, you know she loves the Wizard of Oz. Her fascination with it all began by my taking her to an elementary school play. I took her to that play last spring. I’ve mentioned before in my blog that I often write posts and then do not post them. Sometimes I don’t like them. Sometimes I decide it is too personal and I keep it for myself. Sometimes I just don’t feel like it is ready. This is one of those posts. It is just how my heart works, I’m not sure why. I wrote this and tucked it away months ago. But this morning I woke up and decided out of the blue, today is the day for that post. It seems random. Maybe it is because there is someone out there who needs to read it this week. Only God knows. I just wanted to explain that it happened almost a year ago. But it was significant enough to remain on my heart and mind all this time. I hope it touches someone else today.

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I think about it all the time. Hope is what keeps us going. And I am always looking for ways to keep it. Because it can be forgotten, and it can be lost.

Since Lilli started to communicate to us through her ipad, I have felt more positive about having a child with special needs than I have ever felt. The thrill of communicating with Lilli has pushed the other significant difficulties into the background a bit. I am not clueless about what Lilli wants, thinks, and feels anymore, which was most of the frustration before. It is still in the beginning stages, but the thought of her communication getting better, well, that gives me hope for the future. I have to look for things to hope for, and remind myself that God can do anything.  It is part of the reason why I write things down. When I am feeling overwhelmed and depressed about Lilli’s needs, I can go back and read what I wrote on Lilli’s eighth birthday and remind myself that she was born for a purpose, and created to be this way for a reason. Even with knowing all of this, I am only human.  And sometimes, I forget to have hope. Even after getting all teary and pouring my heart out about how Lilli was created by God to be exactly who she is.

I forgot on one particular night, for just a few minutes.

I took Chloe to see a play. Chloe loves theater, singing, dressing up, and all kinds of drama. She creates much of the drama in our house each day, sometimes with costumes and sometimes without. So when I heard about the free performance of the Wizard of Oz put on by a local elementary school, I was excited to take her to see other kids perform a play. I know Chloe will be on stage someday. She uses her plastic microphone and costumes almost every day at home. Since my mother in law was visiting, I was able to take Chloe and not worry about childcare for the other two while my husband was at school. Chloe skipped across the parking lot next to me, delighted about seeing the play. I, once again feeling a mixture of guilt and thrill for being out with one child while the other two stayed home, made my mind up to truly enjoy this short date with my five year old future actress.

We said hello to a teacher’s aide that I knew as we entered the lobby. I held Chloe’s hand tightly as we wound our way through the crowd into the seating area. The auditorium was packed with rows of extended families with cameras ready, and toddlers trying to climb over the backs of seats. Chloe and I picked our way to two seats way in the back, crawling over a few people to get to them. I read the photocopied program while Chloe bounced on the flip-up seat. Finally the lights dimmed. When the curtains pulled back and an eight year old Dorothy began to say her lines and sing, I was blindsided with an unexpected flood of emotion. I got teary and a lump formed in my throat. I was a little shocked at my reaction, but I should have known better. Moments later when an adorable group of elementary-aged munchkins danced around and sang, I put my fingers up to quickly wipe tears from my eyes.

Chloe noticed. She peered at me in the darkness.  She whispered loudly as five year olds do, “Mommy, why did you just do THIS?” and she put both of her first fingers up to her eyes and copied me.

“It’s nothing, sweetie, watch the show,” I whispered back.

I prayed and tried to get a grip. I have these moments every once in awhile. You see, this was Lilli’s elementary school putting on this play. It snuck up on me. Even when we walked in the door and saw that teacher’s aide, I thought I was fine.

That teacher’s aide was Lilli’s teacher’s aide in her class last year.

I thought about how Lilli went to that school for two years, and would still be in that building everyday if she were not medically homebound because of her uncontrolled seizures. I thought a ridiculous, heartbreaking thought that she was the same age as those other kids, and that I wished she could be up there on that stage dancing and singing with them. I went down that mental road that a mom of a special needs child should never go…the “What if” road. As in, “What if Lilli did not have special needs? Would she be friends with those kids right now? Would she be in the play? Would she have been picked to be Dorothy? Or a Munchkin?” I was torturing myself and discreetly wiping away all of my mascara.

Singing and acting talent runs in our family. I thought about how Lilli recently put her hand on her neck and typed on her ipad that she wished she could sing. I wish I had handled things differently that day. We were listening to a kids CD in the morning called “Seeds of Courage.” I love the first song, where there is a solo part that is sung by a young girl. Every time I hear it, I think about how I love her sweet, clear voice. Lilli was standing near me during that song that morning, and put her hand on her neck like she wanted to say something. I pulled out the ipad and asked her to tell me what she was thinking. She typed that she wanted me to turn it off, because hearing that girl made her want to sing. And she can’t. I turned it off and sat down with Lilli. I told her that everyone has different gifts.

I said those exact words to her, and I meant a lot by it. But I obviously just thought the deeper meaning to myself, and did not bother to explain it out loud to her. Hours later, she typed to her therapist Morgan about “opening presents.” Morgan was confused and did not tell me until later. By the time her teacher Leslie came for Lilli’s two hour block of afternoon school time, Lilli was really upset. I asked Leslie if she could figure out what was going on, and she told me Lilli kept typing that “everyone has gifts,” and she wanted to “open them now.”


I had to explain to Lilli that there were no presents, and that when I said “everyone has different gifts,” I meant talents. Poor girl went all day thinking that she was going to get a present, because I had told her “everyone has different gifts.” (We must be careful to be literal when speaking to our children.)

But even though it is a hard concept for children to understand, it is true. Lilli does have gifts. She has gifts and talents that I do not have. To see her on the outside, strangers might think she has less than other, “typical” children. But to know her, she is incredibly blessed, and we are only beginning to learn what Lilli is able to do. And bonus for us, she is a blessing to others. There are people in Lilli’s life who adore her, who love spending time with her, and who want to know what makes Lilli tick. She can touch other people’s lives in a way that most cannot. That is a gift.

So back to the dark auditorium, where I am wiping my eyes.  I guess everyone does this in some way or another. We can all mourn the thought of how “things might have been” or “should be.” I think it might be normal for any parent of a child with special needs to have these thoughts from time to time. We can’t help it. We see another child the same age as ours and start to think about the what ifs. You can do that with any situation in your life. Especially the situations in which we had absolutely no control. What if things had been different?

 But that’s just it. This is the way it is.  And it is for a reason. For a greater purpose than we can fathom. There is a verse in Psalm 139 that says, “All the days ordained for me were written in your book before one of them came to be.” This is the verse I go to when I feel like life is spinning out of control. I believe it with all of my heart, but I need to read it constantly to be reminded. To be reminded that God is in control. He has it all planned down to the finest detail. He has my future already planned, and he has Lilli’s future planned. I take great comfort in that, knowing that He has plans for my little Lilli.

All of our children are going to have different gifts and talents. They may not all be up on stage. They might not all be running on a sports field. They may not all be exceptional artists or musicians. But each one will have their own purpose in life, blessed by God and created to do different things. Why do we waste time lamenting about how we wish things could be?

As for hope.

I do not think it is human nature to always have hope in life. We need to be constantly reminded of our hope, and what we put our hope in.  I do not know what the future holds for Lilli, or for any of our children.  But I remind myself of the hope I have in Jesus, and in His word. Because I put my belief, trust, and hope in Him, I have faith that He knows our future. And He has great plans for Lilli. And His plans were for Lilli to be born this way, here, now. To us. That I would be her mother. And she has a purpose for being here. She may be different than all of those kids dancing and singing up on that stage. But she has other gifts.

We just can’t see all of them yet.

Lilli kissing Chloe (who is wearing her Dorothy from the Wizard of Oz costume).

Tuesday, November 20, 2012

Fear of Restaurants and Being Spontaneous

Not long ago, we got a last minute invite from acquaintances to go out to dinner.

With all of our kids.

To an actual restaurant. Again let me say, with our kids. And not to McDonald's, either. To a Thai restaurant.

I told myself, hey, lots of people do it all the time. I've heard about it. I've seen it before. It is entirely possible for people take a bunch of kids out to eat and actually leave the building unscathed, with full bellies. We...just don't attempt to do that.

Our world became a lot smaller when Lilli was born.  Dates, vacations, road trips, eating out, shopping, all of those public activities became extremely hard. I became paranoid and began to avoid unnecessary, difficult outings. So we just got used to staying home a lot. We don't go out to eat, we stay home and cook. We tell ourselves that "our cooking is better than most restaurants anyway" and "eating out is expensive." Those reasons are valid (depending on the restaurant.)

But the biggest reason is because it is just too hard for it to be worth it.

So this was complicated. Jasen told me about the casual invite which had actually taken place on his voice mail. We had a short window of time to decide and call back. The person who asked really does not know us, and obviously does not know that we just do not "go out to dinner." Oh, and it was to a restaurant that we had never been to before. For an early dinner at 5:30. I was intimidated by the potential disaster I envisioned. (I can be a bit dramatic at times.) But without explaining why in detail, I will just say that it was one of those situations where we knew we had to go. Trust me, it was important.

Maybe one day, when we know these people a little better, we will look back and laugh at our preparations and paranoia. But the next few hours before dinner were devoted to avoiding a meltdown at the restaurant. We made food for the kids. We fed Lilli her dinner way early at 4:00, and gave the other two a huge snack. We grabbed Josh's lunchbox full of hotwheel cars and some crayons and markers for Chloe. But Lilli, well, I was not sure about her. I looked at the ipad and decided it was time. I needed to break down and actually BUY a movie for her from itunes. I guessed that there was not going to be free wi-fi for her to watch Elmo on Youtube at the restaurant (our best distracting activity), and I later found out I was right. I figured it couldn't be that hard to figure out how to put a movie on an ipad, I had been talking about doing it for months. I am so behind the times about some things. So I found one of her favorite Sesame Street movies, The End of Silliness. It was totally worth the $6.99. Of course, I didn't know it would take that long to download, with our slow internet connection. I watched the "downloading" line, paced, and packed drinks and diaper bags. It finished just in time.

While we drove to the restaurant, we made plans and instructed Chloe to use her manners. As we pulled in, Chloe informed us that she had to go to the potty again. I took Chloe and Lilli inside to the restroom together. That took about fifteen minutes. Then, we were READY.

At the table there were four of us adults, and seven children. The kids did awesome. Josh did not throw any silverware or yell loudly, "MA! MA!"" He sat in a highchair and played with his cars quietly the entire time. That was a small miracle. Chloe colored quietly with the children of the other family. Lilli sat next to me and watched her new movie on the ipad which was discreetly laying on my lap under the table. I didn't want it to be a distraction to the other kids, or to other people in the restaurant, so I put the sound on mute. Lilli did great sitting in a real chair, and only tried to get up a few times. I kept my arm around her and hugged her tight next to me with my left arm, all while I tried to eat my dinner with my right, balance the ipad on my lap, and maintain a coherent conversation with a person I hardly know. Jasen entertained Josh and held another conversation at the other end of the long table in the middle of the restaurant. I was nervous, but it went better than I could have imagined.

The best part of the dinner was when one of the people we were dining with commented, "So.. your kids are doing great! Are they always like this when you go out to eat?"

Jasen and I glanced at each other. I said, "Um, we don't...really, go...out to eat at restaurants."
They both looked from me to Jasen, who smiled sheepishly and shook his head, "No, we don't."

I feel like we are re-learning how to live life sometimes. We are learning how to do "normal" things in a different way. We cut back drastically on all of our activities years ago, because of Lilli's seizures, her behavior, her feeding issues, and finances (which were affected by having a child with special needs).

Now, we are at a point where we can try to go out spontaneously as a family once in awhile. And if we try it, we find sometimes that it actually does turn out OK. I don't know when we will attempt to go out to eat with the kids again. Probably not until someone else talks us into it.

And then I will download another itunes Sesame Street movie, take a deep breath, and we will try it all over again.

Thursday, November 8, 2012

Hope from a Funeral

I recently got back from the funeral of a close loved one. This dear person always asked about Lilli. Always prayed for her. Knew that I had a difficult and challenging situation. She listened to me. She cared about me. She showed love to me and to my husband and children. I will miss her.

I flew there by myself, for several reasons. When people at the funeral asked about my family, I did not try to explain that we could never fly with Lilli. At least not right now. I cannot imagine how we ever would. Out of the long list of reasons, I think autism and sensory issues are on the top; a close tie with seizures. Aside from the insane panic that a potentially life-threatening seizure would cause on an airplane, I also think of how in the world I would keep her from shrieking, pushing, crying, bolting. How I would get her through the crowds of people in the airport. How she runs away from me. The public bathroom. The meals. The simple act of getting her to walk down a teeny aisle and into a claustrophobic seat. Traveling by car is challenging enough. If I have a hard time dealing with some things in a mini-van on the side of the road, I am pretty sure I would not be able to handle them well at 30,000 feet. Closer down toward the bottom of the list is the minor fact that college students (which I consider us to be since my husband is in school full time and we are living on school loans) do not have the luxury of flying whole families across five or six states at the last minute.

How I wanted to go as a family. How I wanted to take even just one child with me. I am now beginning to see how unfair I have been in the past, to Lilli. Before we knew what was going on in her mind -  that she is really "in there," and cares deeply about what any other child cares about, it was much easier.

Before, it was easier for me to say, "I'll just take Chloe. I can't take Lilli." I didn't think Lilli would care, or understand. Now I know that she does. For this trip, I had the fleeting thought that I could drive the 12 hours with Chloe, and maybe Josh too. But there was no way I could take all three. I would not even take Lilli alone for many reasons. The drive was long for the short time I would be there. I looked at trains. I looked at flights. Since I could not take all three children, and it was unfair for me to take one or two, and ultimately we could not even afford a plane ticket for any of them, I took no one.

In the end, I flew up by myself with pictures of the kids. I look forward to the day when traveling is easier. But honestly, I do not know if that day will come. I will just have to hope and pray that it does someday. It is hard to see into the future when you are in the thick of things.

I came home with a hundred or more memories, saw people I had not seen in decades, and had the rare chance to hug my siblings, nieces, nephews, cousins, and dear old friends. Of all the meaningful encounters, reunions, and shared tears I experienced, I will only share one here. Not because it is any more important than anything else about my trip. But because this blog is about Lilli, and about me being Lilli's mom.

A woman came up to me after the funeral. I had not seen her in at least fifteen years. She introduced herself as Amy's mom. But I knew who she was before she even spoke. I went to youth group with Amy. I remembered her right away. I asked about Amy and she showed me pictures of Amy's beautiful family. But then she asked me about my children. She knew I had three children, and she knew I had one child with special needs. How did she know? I assumed prayer lists, women's groups, and word of mouth probably. I explained how we came to live where we do because my husband is going to school. And that the reason he is going to school is ultimately because of Lilli, and other children like Lilli.

She said, "Yes, children with special needs have a way of changing our lives like that. I became an OT to help my son."

And that's when I remembered Steven. Her son.

Steven has special needs.

It's funny how perspective changes in an instant. In a split second, I zipped from a teenage memory of Steven at a youth group activity, quietly hanging out near his big sister... to a mother speaking to another mother of a child with special needs. In a flash, I had a completely new view of Amy. It is how I look at Josh and Chloe now. How they are the siblings. How they will spend their lives helping and encouraging their sister Lilli because she has special needs. Amy became a doctor because of Steven. I did not know that. I had an instant longing to sit down and ask this mother to tell me everything she knows for the next five hours.

Instead, I asked how old Steven is now.

He is thirty five. Two years younger than I am. She smiled as she told me how well he is doing, how he has a job and friends through the programs he is involved in. How he is happy. How he has activities and a social life. How she used to think that life would "end" after school, but then found out that it was only just the beginning. That great programs and activities do exist in some areas for adults with special needs. She told me to have hope. And it brought tears to my eyes and soothed my worried heart. Even now, tears are springing up as I think about how her few words will impact me forever.

I later thought of another mom that was there, who has an adult daughter with Downs. I wish I had spent time talking with her also. She said hello to me, but I was distracted. I wish I could go to lunch with these mothers and talk with them for hours. There is nothing like talking to someone who has "been there."

I take rare messages of hope from others and breathe them in like oxygen after swimming up from deep waters. I tuck them away and treasure them like prized possessions. What a strange, sweet interruption to mourning as I reunited with this mother of a boy I knew so long ago.

She gave me hope. I wonder if there is any better gift in life to give to a person... than hope.