Evening Prayers

Right now my wonderful husband is reading to the girls and saying prayers with them. The girls clamor to get to go first, lifting up the very real concerns of their life. "Dear God, I pray for the boo boo on my leg and the line on my butt I got today when I was in the sun without sunscreen . . . " They pray for friends, for our upcoming car trip and for their stuffed animals. Then Alex prays for Joshua, that he would someday be completely healed.

It's a bittersweet thing to hear that. He's modeling for his little girls a belief in and a hope for miracles. I don't do that. I pray that Josh would use his words more and that he would complete his potty training. When I am alone, I pray for other things that I am desperate for, like that he would stop playing with himself in public places. But I don't pray for a complete healing. I just don't have the faith to even ask for that. But I am touched when other people do.

Hope and Anna are growing up with so many things being "normal". Praying for very real, up close miracles. Watching TV, oblivious while their older brother screams his head off under a big blanket right next to them. To them, their brother is their brother. The only brother that they have ever known. It's so amazing to me how much of their reality is shaped by what goes on in this house, in this household. I hope, with all my heart, that the imperfect love and the mustard seed of faith that we have and that we model to them is enough to give them a good start on a good life.

Joshua Learning How to Use His Words

What’s that called

when you have no idea

that the person you are talking to

doesn’t know what’s in your head?

Joshua’s ever recurring statement

with no subject,

“I want it”

like everything with this kid

happens over and over again.

“I want it”

“I want it”

“I want some”

Repetition, perseveration

echolalia.

His response to, “Hi Joshua”

is “Hi Joshua”.

But today comes a surprise connection,

like the sun coming out in a constantly cloudy place.

At the end of an eternal effort

my beautiful son

decides to tell me what he wants

using his words.

“I want Barney video.”

I run to turn it on for him.

More about Anna and her Brother

"Is Joshua always going to be special-needs?" Anna asked her question while looking out the window of the back seat of my van.

I wonder what is going on in that four year old brain of hers. How is she processing the life that she has been given to live and the family that God put her in.

"I think probably so, Anna. Why do you ask?"

"Well, is he going to get married?" (Anna has been thinking a lot about marriage and weddings. I began to be concerned about her thinking about such "big girl" stuff until she told me that she has decided that she is going to marry her Daddy.)

"I don't think that Joshua is going to get married, honey."

"Well, who will he live with when he grows up?"

"Probably Daddy and me," I replied.

"Aren't you and Daddy going to be really, really old by the time Joshua grows up?"

I can't remember how I replied but I was so struck by how such deep concerns bubble up in her developing little brain. She's so young. She still draws in stick figures. She's just now mastered recognizing the letters of the alphabet. She spends most of her time in the present, which is filled with immediate impulses and gratification.

Yet, somewhere in there, Anna wonders about her brother and his future.

Everyday there are reminders to me that Anna and her older sister, Hope are being shaped, from the very ground up, by the presence of this different little boy. I was looking through recent pictures this week and noticed that in this one (above), Anna is helping her brother to look at the camera.

Earlier this week we were at Hope's school picking up Hope and another boy who I was giving a ride home. Josh was in the back of the van screaming his head off for no apparent reason. The boy (a very polite and nice kid) had his fingers in his ears and did not look like he was looking forward to sitting in the back with Josh. The girls were already strapped into their booster seats in the middle row. While I put the other boy's backpack into the very back of the van, I saw Anna unstrap herself, pick up her booster, and settle herself into the back seat with Josh. The boy that I was giving a ride to seemed mighty relieved. Later, I asked Anna about why she had done it, whether it was out of concern for the other boy or for Josh. Anna said, "Because I love Joshie, Mommy. He's very special to me."

Oh man. Such sweetness. . . but do I start saving now for therapy for this sweet little girl who feels responsible for her brother at age 4?

Helping Others Get to Know Josh

When I turned 40 years old (two years ago), I did some reflection about some goals for my 40's. What were my goals for this decade of my life? What are the most important things that I really want to have happen in the next 10 years?

I can't even remember what goals #2-5 were (probably something about losing weight and working out more-- oh well). Goal #1 was to live and arrange our lives so that we had a good number of people who knew Joshua on a deeper level.

It's so easy to miss out on getting to know Josh. He generally doesn't communicate with words. His auditory sensitivities make many social events impossible for him. He has a rather packed schedule of necessary therapies and medical appointments. He doesn't really care about socializing. His favorite thing in the world is to sit in his room and listen to music by himself. His disabilities are complex. Yes, some people remember that he has autism but only a handful know what Septo-Optic Dysplasia even is or remember that he has this primary diagnosis. There is something so inherently isolating about living with disabilities.

But I have a deep desire for people to, get to know my son. He is such a beautiful little soul. He is an incredible source of joy. He has so much to teach. You just have to have eyes to see and ears to hear. Surely, the blessing of who Joshua is is not just meant for our nuclear family?

So I've kept this goal in my heart and in my prayers-- that by the time I'm 50 years old (and Josh would be 16!) there would be a number of people, and families who have gotten to know some of the complexity, beauty and challenge of who Joshua is.

One of the things we've started to do as a family is to vacation with a couple of other families. My husband has a friend from college who generously loans us his vacation home several times a year so for the past couple of years, we go up to this cabin in the mountains with one family on MLK weekend and another family for a week during the summer.

A few weeks ago, we went up for an extended weekend with one family with whom we are long time friends. Their eldest son, Ben, is 12 and a very sweet kid. Ben has always had a special willingness to hang out with Josh. A few years ago, during an Easter Egg hunt in their backyard, Ben walked around holding Joshua's hand and helping him to find eggs. During our weekend at the cabin, we went for a little hike and, without prompting, Ben took Josh's hand when he sensed that Josh was feeling visually insecure about walking across a bridge. Walking behind them, I noticed this, smiled, and snapped a picture.

The other family that we go to the cabin with also has a son who is twelve, Mark. Mark's mom told me a story the other day that touched me. Apparently, a few of Mark's friends from school were talking about something or someone and saying that it was "retarded". Mark spoke up and told them, "Hey, you shouldn't use that word. Our family has a friend who has special needs and they would not appreciate you using that word like that." I mean, who does this when you are a twelve year old boy? Did I ever speak up for anyone else at all when I was twelve? I don't think so.

Somehow, my son's very presence is teaching people about advocacy and about looking out for unexpressed needs. I love this. How will their experience of knowing Joshua help these two young men to become better students, husbands, dads, bosses or church members? How will being around Josh give them a category for caring for those who are different from the norm?

I also love it when people (and especially other kids) ask me questions about Joshua, his life, and even his disabilities. I like it because it tells me that they see him and are wondering about him. I appreciate the initiative to move a little bit into his/ our world. I feel included, known, and loved.

Sickness Sanity?

Hello friends! I'm back after a brief hiatus, primarily due to sickness in our household. Here's my question of the day: How do you stay sane/ happy/ energized/ motivated when you are dealing with week after week of sickness?

Right after Christmas, three of us got lice (thanks to an outbreak at my daughter's preschool). Soon after dealing with that, I got sick, the girls got sick, my husband got sick (and has had a horrible cough that kept him up at night for three weeks). Josh has had a stomach bug three times since the new year started (and it's only mid-February)!

I woke up this morning and realized that I might be going insane. I spent most of the weekend at home monitoring Joshua, who had a fever. Due to his medical issues, if we can't control his fever or vomiting then we have to take him to the emergency room to avoid a potentially deadly adrenal crisis. This is somewhat stressful.

Now, I am sitting here at my desk, having sent all three kids off to school . . . but I'm feeling a bit PTSD. Who knows when the next round is going to hit. Why schedule anything at all when all routine is going to go out the window again because someone is going to have to be taken care of all day?

SO, someone out there give me some advice. How does a modern mom weather the winter cold blues with emotional and spiritual strength?

Josh and the Homeless Man at Church

My son has a ministry to people who hang out in the back of the room during our Sunday Morning service. Our church meets either in a community center theater or a gym, depending on the week. Josh prefers the gym as there is more space for him to walk around in circles as he enjoys the musical worship. Josh is so happy and in his element when he is experiencing the music of the worship band (and congregation singing) at church. In fact there are a few other autistic kids in our church who do odd but sweet things during the worship service at our church. I think that most people have gotten used to their (mostly happy) noises. Some have even told me that they are blessed by watching Josh experience God.

Josh has an aide most weeks, in case he gets overwhelmed or needs to walk around outside. This past week, his aide told me a memorable and unusual story. After walking in circles for a while, Josh noticed a man sitting on the floor by the door and decided to go sit in his lap. The man was a bit startled so Josh got back up and resumed his solitary little dance. Later, after the service, the man approached Josh and interacted with him a bit. He told the woman who was his aide that morning that he was very touched by Josh's initiative, by who Josh is and by how he was experiencing God. Apparently, this man is homeless and is currently living in his truck. Before his life took some difficult turns, he was married to a woman who was related to a child with Aspergers Syndrome (a diagnosis which is on the autism spectrum). Although he no longer related to this child since his divorce, the connection seemed to stir up deep memories for him. He shared some more about his life with the woman who was Josh's aide that week then thanked her for listening. "I guess I just needed to talk," he said. He told her that he would see her (and Josh) next week again at church.

I've often wondered what the purpose is to Joshua's life. He will not contribute to this world by being a lawyer, an academic or a doctor (the three options that most Asian-Americans are encouraged to consider). He will not make a lot of money. He will not offer insights, wisdom or interpretations to his community. What he will do, however, is to have very simple but human connections with people and, hopefully, will touch them with who he is. In this way, I believe that God has a good and useful plan for his life. I feel honored to get to be a part of that.

In Praise of Birth Moms

Last week we woke up and found that we had been sent a surprising email. Joshua's birth mom (I'll call her Andrea) emailed us after 7 years of not being in touch. We were thrilled to hear from her.

I posted something brief about it on Facebook and it was interesting to me to hear people's slight discomfort with open adoption even through their comments on my quick post. "Well, I'm happy if you're happy" said one Facebook friend. "You have such a big heart" said another. I have a feeling that it's quite odd for most people for adoptive parents to be in touch with birth parents.

Alex and I love having connection with our two adopted children's birth parents. Once we learned what "open adoptions" could be about, we were all for it. We want our children to know that adoption is a part of their life stories not because they were abandoned but because they were born of amazingly courageous young women who made a choice in love. These women came to decide that placing their babies for adoption would be the best option for the child and for them. We want to know and bless the cultural backgrounds of our children as much as possible. We appreciate having as much medical history as possible. Open adoption has been a tremendous blessing to our lives.

For Hope that means that we get visits about three or four times a year from her birth mom. We've met her entire nuclear family and some of her friends. She is an amazing person; lovely, gracious and mature. About a month ago for her last visit, Hope suggested that her birth mom might want to take just her out to ice cream for a "special time". Anna asked why she couldn't come along. Hope told her, "Because she's my birth mom so I get special time with her." Anna declared that it was not fair that she didn't get special time with her birth mom. I reminded her that I was her birth mom and that she often gets special time with me. I was informed that I don't count because I am the "regular mom" and that she wanted another birth mom that doesn't live in our house (presumably so that this person could take her out to ice cream).

We were in contact with Joshua's birth mother for about a year after he was born and placed with us. We even drove out to her town (about 2 hours from ours) to pick her up so that she could come and see where we lived and where Joshua was going to grow up. When Joshua was hospitalized and diagnosed at 2 months old, we were in phone contact with her then email contact. We told her everything we knew about his diagnosis (SOD) by that first year then we lost contact with her. (She stopped responding to our calls and emails.) Our adoption social worker told us that it is not uncommon for young birth mothers to need to take time away from contact with the adoptive families. We respected that but were sad to not be able to share about Joshua's life with someone else who loved him very much.

This is some of the background to why we were so thrilled to hear from Andrea. She (along with Hope's birth mother) is one of our heroes in life. She became pregnant at 15 years old and had no family support in her life. She was living with an older brother, who mostly spent time working in a city a couple of hours away. Andrea broke up with her boyfriend immediately and did not tell anyone about the pregnancy (including the boyfriend/ birth father, who did not know about the baby until he was born and until he was asked to sign papers terminating his parental rights). For some reason, despite only having information about abortion as a possible response to an unplanned pregnancy, Andrea felt that it would be wrong for her to abort the baby so she kept the pregnancy. She wore big sweatshirts through the end of the school year then mostly hung out at home by herself during the summer (Josh was born in August). When she went into labor, she mostly labored at home then took the bus to the hospital. She gave birth 30 minutes after she arrived. Then she asked the nurses to help her to find options for adoption.

Although Hope's birth mother's story is very different, she shared Andrea's experience of feeling immense external pressure to abort but also having a strong internal feeling that this was not what she should do. Both of these young women walked through the long months of having a precious baby form inside of them. Both carried through with the conviction and choice to allow someone else to raise that child. I have no idea what kind of courage and love it must have taken to make this choice but I respect it so much.

Through adopting Hope and Joshua, our eyes have been opened to the reality that there are many, many women out there who are birth moms. They have a huge part of their lives that few people may know about and few might affirm. One day, we shared Joshua's story with a speech therapist who was at our house for a home visit. She listened carefully then she shared with us that she had given birth to a child over 20 years before and had placed her for adoption. Ironically, she and her husband struggled with infertility and never had children. As she told us her story, she wept openly, her grief still very much with her, along with her love for the baby that she had so many years before.

There is so much more to say about Joshua and Hope's birth mothers but the main thing that I have on my heart today is this: Thank you. I treasure that suffering and sacrifice that you went through so that these beautiful, precious children can exist. May God honor what you have done and who you are.