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.

1 comment:

  1. I am so glad you were able to reconnect with these people and gain some hope for the future. Add to that constant advances in therapy and medicine and you never know what the next 10 years will bring. I am glad you got to go back but I am sorry for your loss. Was it someone I knew? Hugs to you and yours.