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).


  1. Jennie, this is beautiful. And that picture! Oh my. Have you ever told Lilli that she will be able to sing in heaven? I told Sam that he would be able to hear in heaven, and his body would be strong and whole and healthy and his face lit up... he knows that and holds onto that hope. You are doing a beautiful job with your purpose.

  2. Thank you, dear friend. Yes I remember the first time I told her that. She was four. I did not even know she could understand me at the time, but I hoped. I will never forget the expression on her face. It was priceless. Our children all need to hear that. I love that your sweet Sam knows that too.