The Dementor Moment

Parenting young children is almost always an exceedingly tiring experience. However, every now and then, a parent will encounter a situation that sucks every little bit of life force from your body and soul instantaneously. My husband and I refer to it as a "dementor moment", named after the magical creatures in the Harry Potter series who drain people of all positive emotions and leave them with only darkness and despair.

I had a dementor moment this very evening. My husband was working all day in his office preparing for an evening meeting. I was in full "get the kids to bed early because I'm already pretty tired" mode. Two thirds of the children had been fed and I had some good momentum with casting vision for a nice bath when my son threw up all over himself and me. Every ounce of energy immediately left me. My chin plunged to my chest in defeat.

When Josh throws up, it means that we have to be super watchful for how he's doing. We triple one of his meds (specifically, the hormone that helps him to fight illness) and, if he can't keep it down, we have to give him a big, fat emergency shot and then immediately take him to the emergency room to get more meds intravenously. We are never allowed to take Josh very far from a hospital with an emergency room. As you can imagine, we have to be pretty vigilant when Josh gets sick.

I left the mess that was my son and ran for the phone to call Alex. "Josh threw up. I need back up. Come home now." Thankfully, my husband's office is only 10 minutes away and he registered the level of need in my voice. He came through the front door in 8 minutes and immediately got to work on moving the girls along their evening routine (while throwing dishes into dishwasher and making the kitchen a little less overwhelmingly chaotic). I put myself and my son back together again, praying as I went. Within 10 minutes, the girls finished their dinner and were headed toward their bath. I sent Alex back out the door to finish prepping for his meeting and I was able to go on with the rest of the evening at home.

Sometimes, all that is needed is some quick back up and the good sense to ask for it. The situation was not really despair-worthy but I just didn't have it for that moment. I have learned that you can either try to slog it out yourself or you can try to ask for help-- from a friend, from my husband, from God, from anyone on Facebook, anyone. It is amazing to me how much just a little bit of support goes toward being able to make it. In my opinion, Special Needs Parenting Rule #1 is "Ask for Help".

Birthday Party Conversations

This past weekend, Joshua's sisters, Hope and Anna went to a close friend's birthday party. Apparently there were 12 little girls ages 4-6. At one point, the girls were sitting around and someone realized that everyone there had a brother! The host of the party suggested that they all go around and share their own name and their brother's name. When it came around to the older, 6 year old girls, there was additional commentary about how annoying their brothers were. Soon, everyone was chiming in declaring that their brothers were also annoying; pushing them around, taking their stuff etc.

But my Anna said, "My brother's name is Josh and he's not annoying. He doesn't know how to be annoying because he has special needs!" The birthday girl's mom, asked a few questions about what "special needs" means and they embarked on a whole group conversation about what it means to have special needs and the different kinds of special needs there are, physical, vision, etc. Anna told me all about this conversation while we were brushing her teeth later that night. I so wish I had been there to soak up the sweetness and beauty of the moment.

Who is this Stranger in My House?

For the past several weeks, Joshua has woken up in the morning and has walked himself to the bathroom to pull down his pants and take a morning pee. Now, for most typical 8 year olds, this is not a big deal. This is a huge deal for mine.

Although Josh can do much of the bathroom routine by himself, he has never taken responsibility to get himself there at the right time. For his whole life he has seemed utterly happy to just go in his pants if we don't take him. I cannot tell you how many times I have cleaned up the accidents that this child has had.

Because of Joshua's hormone deficiencies, he is usually running out of urine condensing hormone by morning time. This means that it is very difficult for him to control his output, especially at that time. Josh always goes to bed with a nighttime diaper, even though he has worn underwear in the daytime for several years now. I have never imagined that we would make progress in his being potty trained at night and, honestly, it has not been at the top of my list of goals to work on for Josh.

The nighttime diaper is a pretty big deal in the world of caring for Josh. If you don't put it on right or, God forbid, if you don't give him the right dose of evening pills, you can wind up with a bed that is completely soaked. We have thrown many, many, many yucky pillows away.

However, for some reason, lately Josh has decided to not pee in his diaper at night or in the morning in bed. And he has decided to take responsibility for getting himself to the bathroom in the morning. The first time he did this, I seriously thought that there was a stranger in my house. I could tell that the person who walked by my slightly open bedroom door was taller and heavier than my girls. Who could it be? I had no category for Joshua getting himself out of bed in the morning. Immediately, I jumped out of bed to see what was going on to find him calmly pulling his diaper and pajamas back up then washing his hands. "Want toast" he said to me with utter nonchalance.

Even now, weeks into this pattern, I'm shocked and surprised every time this happens in the morning. I take a minute to be thankful and amazed then I run to the kitchen to get a reinforcing chocolate chip and jam it into his happy little mouth saying, "Josh, if you take yourself to the bathroom, you get a . . . " "Choc-lit" is his reply.

I'm not sure when Josh will be fully potty trained; when I don't have to mentally calculate how long it's been since he went to the bathroom and then prompt him to go. He's not totally trustworthy yet. But I would like to take a minute to note that my son is learning to take responsibility for his morning pee and, for that small but significant thing, I rejoice!

Greatness

Last week, miracle of miracles, I went and saw two different films at the cinema. A plethora of evenings that my husband go to be out doing fun, sports related things prompted me to organize a ladies night out. Then a few days later my husband and I had a scheduled "date in the middle of the day because that's when we could arrange childcare" so we sneaked in a matinee.

The first movie that I saw was "Secretariat", which is about the horse that won the triple crown in 1973 and his owner, Penny Tweedy. The second one was "The Social Network", which is about Facebook founder Mark Zuckerberg. First of all, how wonderful it is to be immersed in good stories. They say that the body craves food and water, the heart craves love and the mind craves stories. I resonate wholeheartedly with that. Nevermind special effects or sex and violence, what I crave is to escape through a good story.

I also found that both movies made me think about the worth and importance of my life because they were about "greatness". The pursuit of "greatness" sure does make for a good story.

Secretariat was the only non-human to be listed in the Sports Illustrated list of 100 greatest athletes of the 20th century. The story of Penny Tweedy's is inspiring as well; a regular housewife who dared to reach for the stars. She defied expectations and social conventions to take that horse where no one dreamed he could go. Disney geared the storyline to inspire the movie goer with Mrs. Tweedy's tenacity and inner sense of fight. According to the movie, she was an inspiration to her own teenage daughter, a role model for daring to go for what is deep inside of you. The Facebook/ Mark Zuckerberg story is an amazing one of it's own. This man is only 26 years old, is worth almost 7 billion dollars and is a major culture changer of our era.

Personally, I felt two things. First, I was inspired to look at my life and ask, "How do I still need to be a person of dreams?" I think that there is such a temptation for me to just live my practical, daily life and not hope to be a part of something greater. Of course, not everyone is a world history maker or a culture changer or a millionaire/ billionaire but we all have to have a greater vision for something more, something that engages you to the core or else you begin to die a slow death.

Secondly, I felt sobered by the "cost of greatness". Penny Tweedy became estranged with her husband in the midst of her pursuit of the triple crown for her horse. According to "The Social Contract", Mark Zuckerberg was, well, not a very nice human being and really screwed over his best friend. I know that it's not always this way. Not every great person in the history of this world had a failed marriage or was a bad friend. However, I am aware on a deep level that in order to be great in this world, you have to give up a lot of the best things in a normal person's life, family normalcy, healthy friendships, and quality time for both.

I am thinking about how tempting it is to want to be great in the eyes of people. Despite the costs that these people paid to be great, it is so darn attractive. Who doesn't want to be a super-successful, influential, respected person? Who isn't drawn to be warmed by that fire? I am. If I am honest, I have to admit that I love the idea of being famous or powerful or influential. Watching these movies made me realize how powerfully attractive it is to me.

Ironically, at church these days, we've been going through a part of the Bible that is also about "greatness". In Mark 10:43-45 Jesus says, "Whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all. For the Son of Man came not to be served but to serve, and to give his life as a ransom for many." Boy, this really turns the whole "dream about being a billionaire" thing on it's head.

In the end, I do want to be great but I think that I believe Jesus that being great by becoming a servant and pouring out your life is a better path to ultimate, lasting, and true greatness than making a lot of money or making a name for yourself. This is a good thing for me because I seem to have found myself with three little creatures with cavernous needs whom I must serve (sometimes it feels like be a slave to) everyday. One of those little people is someone who will probably never outgrow his need to be taken care of in very basic ways. Because I am a parent of a child with special needs, my life path is one of a servant. My hope and my prayer is that, as I walk this path, my heart stays in a place of really seeking to be great by being a true servant rather than yearning for greatness in some other way.

My Child is Cold

"Look Mommy, it's raining!" My girls were delighted to see true rain really coming down all of a sudden. Of course, it was the first time in a long time that I hadn't checked the weather report. The rest of this week had been overcast in the morning but warm and sunny by the mid-morning or afternoon.

I was hit with the realization that I sent Josh to school today in shorts, a t-shirt and a very thin sweater. Not only did it start to rain soon after I got him on the bus, but I realized that his class was planning on going to a field trip to a pumpkin patch farm this morning. Attached to the permission slip that I had signed earlier in the week was the suggestion to dress your child warmly and to wear comfortable shoes.

I panicked. I sent my son off to school and off to a field trip where he is going to be cold, wet, and uncomfortable. Oh my God. What kind of a mother am I?

Thinking about my child being out there somewhere underdressed and cold hits a "Asian mom/ your children must never be cold" nerve in me. Do you ever notice how Asian parents or grandparents always overdress their kids? We have a park down the street where a bunch of Chinese grandparents gather in the daytime with the small grandchildren that they are taking care of. Those children are always layered to the hilt. Vests, scarves, gloves, thick jackets--- all on a moderately warm day!

It must be somewhat connected to a shame issue. I do feel some worry that people are going to judge me for not having the good sense to properly dress my child. Yes, this can be difficult since I live in a part of the country that has a million different micro-climates and big temperature fluctuations throughout the day. But nevertheless, I still feel the pressure to get it right. . . especially since my child happens to not be able to say, "Hey, I'm cold".

I called his teacher who said, "Yeah, we were just looking through the lost and found to see if there was something else he could wear." (More shame filling my innermost soul.) Apparently, they were still going to go to the field trip despite the rain because the bus was already there and the rain was supposed to burn off by mid-morning. They were planning on leaving in five minutes so there was no time for me to rush over to his school.

I sprang into action. No son of mine is going to walk around a "%#*@! pumpkin patch cold. Not today. Not ever. "Girls, get dressed" I commanded. In less than 5 minutes, I got my two girls and myself dressed, brushed hair and teeth for all three of us and snapped them into their carseats. We were at that pumpkin patch at least 10 minutes before the school bus was.

When they finally arrived,the sun began to come out and it turned out to be a lovely day. My son, however, walked around wearing four layers of clothes all morning.

So what was my deal? Why was I so frazzled this morning? I'm not sure but I have a feeling that it has to do with the fact that there is so much about Joshua that I cannot control. No matter how many exercises I do with him, there are so many skills that he just cannot master. This makes it very hard to feel like I am doing my job as a mom. But there are a few things that I can do and it works. I dress him appropriately and he's not too hot and not too cold. Realizing this (and writing about it) helps me to have more grace on myself.

Two Encouraging Vignettes

Yesterday my girls did two things that were so sweet and memorable that I just have to write them down.

I was dropping Hope off at her school in the morning. Because Josh and Anna did not have school, they were both with me. We were a big part of adding to the congestion in the hallway where Hope was hanging up her backpack in her cubby. Another little girl was standing next to Hope waiting for her turn at her cubby. She stood looking at Joshua, perhaps noticing that he was different. I initiated by saying to her, "Annie, this is Joshua, Hope's brother." Hope immediately jumped and said, in the same happy tone that she might use to talk about going to get ice cream, "He has special needs!"

Annie's dad, who was also standing there in the hallway commented, "Kids are so great." Indeed, they are. I savor the lack of shame or embarrassment in Hope about her brother. She is at a beautiful stage of just loving her brother and wanting others to know all about him. Hope is both exuberant and inclusive. To her, Joshua being different is not necessarily a bad thing. It's just who he is; who he always has been to her. I love that.

Later that afternoon, Anna spent a long time creating an art project using little beads. She has a big bucket of multicolored little tube shaped beads which she puts on a star or heart shaped board. When the child is done, a parent is supposed to iron it so that the plastic beads sort of melt into each other and you get a multicolored plastic thingy, which the girls absolutely treasure. I love this craft because it occupies them for a very, very long time and they are always happy with the results.

Anna had been happily working on this for almost 20 minutes (which is a long time in the world of a preschooler). She left her project alone for a few minutes to go to the bathroom. While she was gone, Josh sat at the table and accidentally knocked the project, and all of the little beads, over. Anna was understandably upset when she saw what he had done and let out a cry of disappointment and sadness. What surprised me, though, was what she said, soon after her discovery. She said, "Well, it's okay. He doesn't know. I can do it over again." Anna is not yet 4 years old. How is it that she was able to set aside her emotions and sense of being wronged because she has perspective on the capacities (or lack of capacities) of her brother? How was she able to have such grace on him when she had to pay such a cost for who he is? Maybe her dad and I are modeling some good things. Maybe she is just a very sweet soul (hmmm . . . sometimes). Maybe God is at work inside of her. I am guessing that it will not always be this way but, for now, I treasure these little snapshots of grace and love.

Anna's Bad Day at School

I asked my 3 year old daughter how her day at preschool was and her beautiful eyes started to well up with big, fat tears. "I had a BAD day!" she said.

"Why sweetie?"

"Sheri said that Joshie is weird and yucky!" My heart dropped. Ok, here we go. We're officially beginning the process of the girls dealing with how other people see and respond to their brother. Josh sometimes comes with me (if he misses his bus) when I drop her off at her school since his school is nearby. If he comes into the classroom as I sign Anna in, he usually wanders around walking in circles, flapping his hands and making his usual humming noises. We are immune to this and it's all good to us as long as he is not crying or screaming. Sheri is a cherubic blonde haired, blue eyed, gorgeous little child with lots of confidence and opinions. Her mom has been initiating for her to have a play date with Anna.

"Oh, sweetie. Why do you think she said that?" I asked.

Anna responded with the saddest face you've ever seen, "Sheri said that Josh makes funny noises and he flaps his hands."

Hearing this completely breaks my heart but I try to be present and help her to process her experience.

"Anna, what did you say to her?"

"I told her that was not very nice because he's my brother and he's very special to me!"

I give her a big hug and tell her that I was so sorry. I try my best to interpret that it's sometimes hard and confusing for people to understand people with special needs. As I am comforting my little girl, I realize that by being a part of our family, she's on a special journey of being an interpreter about the special needs world to the typically developing world. Not only was she born into the burden/ opportunity of being a bridge between the white and Asian worlds, and the churchy and unchurchy world, but between the disabled and typical communities as well. Anna will be a bridge person and she will have the perspective, gifts, joys, sufferings and frustrations of being a bridge person. I know this well.

I hope that this builds and strengthens her soul and makes her a strong and hopeful person. I hope that she can speak up for the rest of her life just as she spoke up today. I hope that she will let herself be comforted when she feels the hurt of other people's ignorance.

I pull out of these deep thoughts and ask her, "Does that mean that you don't want to have a play date with Sheri anymore?" Her response, "Oh, no. I still want to have a play date with her." God bless her little resilient and forgiving heart. I hope I can be more like that when I experience mean people.