Last week I got an email from our adoption agency. The people in charge of international adoptions in China are putting together a book of adoption stories. Somehow, they remembered when we adopted Grace and have asked me to write her story. In 2005, the year we adopted Grace, almost 8,000 Chinese children were adopted. I can't find exact numbers for the years since (although I believe that due to changes in laws, the number has dropped) but assuming about 5,000 Chinese children have been adopted each year since then, that means about 30,000 Chinese children have been adopted in the six years since we have adopted Grace. (Again, I'm guessing here, I don't have exact numbers.) Out of all of those kids, they remembered Grace.
This is both humbling and sad. It's humbling because Steve and I did not set out to do a Big Thing. We just wanted a family. We still do not see adopting Grace as a Big Thing. A Hard Thing, yes, but not a big deal.
But most of all it's sad. They remember Grace because there are so many children with severe needs and so few of them are adopted. As a result, the people who do take on kids like Grace stand out. In fact, when we were in China adopting Caleb, we met a family who had initially been presented with a child who had trouble walking. She would need a wheelchair and physical therapy. The woman had been outraged. "Can you imagine?" she said to me. "A wheelchair? Spending your whole life like that?" She was not talking about the little girl, she was talking about spending her own life caring for a child with such needs. They refused the little girl and then demanded another child. She sounded like she was talking about picking out a dog from the pound and not adopting a child. I couldn't take it any longer. I walked away while she was still talking.
Unfortunately, this happens a lot. I know of several families who have made this decision.
On one hand, I understand. I really do. Raising a child with severe needs is hard. It's exhausting. It's frustrating, and it's unbelievably sad. I understand her fear--because I do believe it was fear that motivated her decision. But it's also wonderful and life-changing. More than anything else, Grace has changed the way I see the world. Yes, there are times I wish I wasn't on this path. It's so, so hard. But I can't imagine my life without her. Yes, I wish every day she could speak to me. And sometimes (often) I don't feel strong enough to handle her needs. But surprisingly, I do. (Well, we do. Steve plays his part too!)
Since getting the email from our adoption agency, I've given Grace several extra hugs, because I can't imagine her among the children who have been left behind. Also, I think about the children who've been so close to finding a family only to lose that chance. I wish things were different because everyone deserves a family, and no one should be judged based on how the things their body can't do. So I will write Grace's story and hope it will help. Because, yes this path is hard. But I don't want an easy life. I want a life filled with hope and love and struggle and joy and heartache. I want to look back at the end of it all and say, "God, I'm tired, but it was so, so worth it."
Tuesday, October 18, 2011
I read the first post about tweeting etiquette and laughed at the things people do, then I scrolled on down to yesterday's post. I was appalled. Absolutely appalled. Let me summarize the situation for you. When the National Book Foundation announced their nominees in the YA category, they included Lauren Myracle's book, Shine. This was a mistake and they meant to nominate Franny Billingsley's, Chime. Instead of simply adding Chime to the nominee list, there were several very public debates over whether to keep Myracle's book as a nominee. In the end, they asked Myracle to withdraw.
My heart breaks for Myracle. To be told that your book is nominated for a prestigious award and then to endure the spectacle of a public debate over whether your book should stay nominated or be removed from the list would be agonizing. However, Myracle handled herself with such grace. She withdrew and then asked the National Book Foundation to donate to the Matthew Shepard Foundation.
To compound the tragedy, Shine is about gay teenager who is beaten and left for dead, and October 12 was the 13 year anniversary of Matthew Shepard's death. I remember hearing about the brutal attack on Shepard 13 years ago. My heart broke then. I struggled to understand how anyone could be so cruel. I still struggle to understand that. Now, I'm a parent and that adds a whole new dimension to the crime. What if that was my child? How could I live with the knowledge that not only had my child died, but that he had died in such a hateful, brutal fashion? It makes me want to stand up and scream, "What's wrong with the world?!"
I want to change it. I imagine Myracle wants to change it too, and that's why she wrote Shine. I can not change what happened to Shepard. I can not change the way the National Book Foundation (mis)handled this situation. But I can buy Myracle's book, and I can talk about it. You can too. And maybe little by little, we can make sure that no one else's child ever has to suffer the way Matthew Shepard did.
Monday, October 10, 2011
Anyway, I started thinking about why we had such a good time. First and foremost, were the people. Is there anything better than getting together with friends you’ve known for such a long time? Not really. It’s one of life’s great joys. Even on Monday, I’m still missing everyone.
The second reason is particular to those of us with special needs kids, and it’s why I decided to write this post. Every time we go somewhere with Grace, we’re always the ones who have to leave early. You see, when you have a child with moderate to severe disabilities, you can never truly relax at someone else’s house. You’re constantly on the look out for something that will hurt her, or something she will break. It’s exhausting. In the almost six years we’ve had Grace, we’ve only taken two family vacations because it’s so hard.
While everyone else is relaxing and having a good time, you’re up making sure your daughter doesn’t shove decorative stones into her mouth and choke. Or that her suspicious twitches aren’t a sign of an impending seizure, because like an idiot, you left her Diastat (medicine that helps stop an overly long/severe seizure) at home. And even if you did bring it, will everyone be horrified when you roll your seizing daughter onto her side, whip out the Diastat and gently push the GIANT tube into her rectum and push the plunger to stop her seizure? Will you be able to do it in time before she vomits all over the nice carpet? Probably not.
Why am I writing this? Because, just like no one ever told you that your days of sleeping in were gone once you became a parent, there are even more things no one tells you when you have a special needs child, and let me tell you, the learning curve is steep. I’m writing because I wish someone had done this for me, even if it was only to let me know that I wasn’t alone. Because waking up and finding that your child isn’t like everyone else’s is terrifying. I’m going to list some of the things I’ve learned. If you have a child with special needs, I hope it helps you—even if it’s just to let you know you’re not alone. If you do not have a special needs child, please read the list. You probably have a friend or family member in this situation, and maybe by understanding what they are struggling with, you can make their life a little easier.
So here goes. Feel free to add to the list in the comments section.
1. You will be terrified, and other parents won’t understand.
2. You will not think you’re strong enough—but you are.
3. You might lose some friends, but you will gain new ones.
4. You will mourn the life you thought you’d have—and that mourning might go on for a long time. Dreams for retirement with your spouse, college and marriage for your child, grandchildren, they all disappear.
5. These dreams will be replaced with new dreams. These new dreams are not better or worse than your old dreams. They are only different.
6. Sometimes, you will wish you weren’t on this path.
7. Some people will be afraid of your child. They will pull their children away from your child as if what she has is catching. This will always hurt.
8. Some people will surprise you with their compassion and generosity—often the ones you least expect.
9. When your child is screaming on the sidewalk, people will stop and stare. Just wave and wait for your child to stop screaming. Then help her up and keep walking.
10. Your child might qualify for Medicare. This is a Godsend.
11. If you have a child who roams at night and they are too big for a crib, investigate a Sleep Safe bed. It will keep them safe at night and you will be able to sleep without worrying. Also, it might be covered by Medicare.
12. You might still be changing diapers on a ten-year-old.
13. Your child—who still wears diapers—will find new ways to take them off at night and throw the mess around her room. She might not be able to feed herself, but she will be able to get out of her diaper. To combat this, duct tape the diaper tabs to the diaper.
14. If your child gets out of her pjs at night, put her in footie pjs, but put them on backwards.
15. Finding a babysitter will be difficult.
16. There is respite care available for special needs kids, but they won’t watch your non-special needs kids.
17. There are summer respite programs/camps for your child, and often they are covered by Medicare.
18. Sometimes your other children need a break from your disabled child. Take them to a movie or to the park. Or put your other child to bed early and play a game.
19. Sometimes you need a break from your disabled child. Even if it’s just going for a cup of coffee while someone watches your child. Do it. You are more than your child’s caregiver, and you must take care of yourself so that you can take care of your child.
20. Laying down across your child to restrain her while a nurse tries to place an IV will become normal, but it will break your heart every time.
21. You will learn to differentiate Bad seizures from Normal seizures.
22. If you have a daughter who has seizures, they might increase when she hits puberty.
23. Along the same lines, there are shots to stop her periods once she hits puberty.
24. Still on adolescence, you will worry that someone will hurt her (by hurt, I mean rape) and she will never be able to tell you.
25. Your other children might become wonderfully accepting of others because of their disabled sibling.
26. Your heart will break as you watch your daughter longing to play with other kids, but unable to.
27. Going to the park might be difficult if your child eats mulch.
28. You will love the kids who reach out to your child.
29. Sometimes people will say stupid/hurtful things. Try not to let it bother you. I tell myself they are speaking out of ignorance.
30. Sometimes people will act as if you are a saint because you have a special needs child, when you’re just trying to be a parent. This is extremely irritating. Again, I just nod and tell myself they are trying to be nice.
31. You will develop your own way of communicating with your child. It might not be standard, but you will understand each other eventually.
32. Sometimes, you’ll need to take a break from the speech therapy, physical therapy, occupational therapy and just be a Mom/Dad. This is OK. Do not feel bad about it. Do not let others make you feel bad about it.
33. Everything you feel will be intensified. You will have higher highs, and lower lows.
34. Some great blessings will flow out of parenting this child. So will some great hurts, but this is true for every parent.
35. Humor helps everything.
I’m sure I’ve forgotten a lot of things. If I have, please add them in the comments. This list is not meant to scare anyone, but to let you know you’re not alone. Everything you’re feeling is normal, and some of us have walked this road before. If you’re reading this and you don’t have special needs kids, the best thing you can do for someone who does have a special needs child is just to be a friend. It’s difficult and lonely sometimes, but having friends makes everything easier.
Wednesday, October 5, 2011
After posting the Darth Vader Volkswagen commercial, people started sending me their favorite commercials. In the spirit of sharing, I give you The Swagger Wagon. Thanks, Doug!
BTW - This is what Steven & I do every time we load the kids into the minivan....
BTW - This is what Steven & I do every time we load the kids into the minivan....
Tuesday, October 4, 2011
As I’ve mentioned in a previous post, I’m a big fan of the TV show House, M.D.. Last night was the season premiere and I was ready for it. I rushed the kids through the bedtime routine and herded them upstairs with strict instructions to “Go to sleep Now!” I was even willing to resort to bribery since Zach normally gets out of bed three or four times to ask me whatever burning question pops into his head before he falls asleep--Mommy, is dark matter the same as anti-matter? Mommy, did you know that the sun orbits around the center of the Milky Way? (If you haven’t guessed, his space is his newest fascination. Sigh, butterflies are a thing of the past.)
Luckily, I didn’t have to part with the two dollars I had slipped into my pocket—hush money for Zach—because he actually stayed in bed and fell asleep. Probably because Steve drove the boys to the unfinished part of our subdivision so that they could do some star gazing without interference from the street lights. Have I mentioned that Zach’s newest interest is space?
Anyway, for weeks, I scoured the internet, eagerly devouring any tidbit about the upcoming season of House. Trailers of House in prison garb had me giddy with excitement. Finally, I thought, after dropping the ball half-way through last season we’ll get to see House struggling with the emotional fallout from his behavior.
Nope. Not at all. Oh sure, there are a few lines where House reveals that no one has come to visit him in prison. That he didn’t hire an attorney and accepted the first deal the prosecution offered in order to punish himself. But where is the substance?
Half way through last season, House and Cuddy broke up. Rather than deal with his pain, House ignored it until in a fit of self-destructiveness he drove his car through the front room of Cuddy’s house then ran away to a tropical island. This season opens with House in prison as a result of that stunt.
Now I like the idea of House in prison. The writers could do some really great stuff with that. House isn’t in charge. His Vicodin usage is monitored. Wow. We might actually get to see him struggle to control himself. Instead, House, being House, finds and accurately diagnoses a sick inmate. Same thing he does when he’s not in prison.
I wanted to see the scenes they just talked about in this episode. I want to see House deciding not to hire an attorney. I want to see him trying to destroy himself. I want to see Cuddy confront him (I know, I know, Lisa Edelstein is no longer with the show—but she should be). I want some CLOSURE to their relationship. I want to see Wilson abandon House.
The reason I love(d?) the show is that it wasn’t the same old boring medical drama. Yes, it’s interesting to see a brilliant doctor diagnose a case. But good grief, enough already with the doctor-dramas. Yes, House’s abrasive, destructive personality is enticing, and I love seeing it. But the real appeal is watching House want to be more than he is and never quite attaining it. That’s why I loved the House/Cuddy relationship. Because it gave House the opportunity to change. And he did. A little. But those little glimmers of humanity were enough.
For a story to remain interesting to readers/viewers, the characters must grow and change. Now, the change doesn’t have to be for the better, House could spiral completely out of control. He’s never going to be a warm and fuzzy guy, nor would I want him to be. What I want to see is his desire to change. His struggle with the knowledge that he’s never going to be able to maintain a “normal” relationship.
I realize that David Shore (show’s creator) has said that he believes people don’t change and that’s why House keeps doing the same things over and over again. Okay. Fine. I can buy that. So don’t show us a changed House. Show us he desires to change, but fails. Scenes that could have shown that desire (House not hiring an attorney, House taking the plea, interaction between House and Wilson, House and Cuddy, etc.) were glossed over in a bit of dialogue. The show broke the cardinal rule of writing—Show, don’t Tell. They told us about these moments, instead of letting us see them. As a result, they lost whatever emotional impact they could have had with the viewer.
Hugh Laurie is a fantastic actor. He could play the hell out of those small moments, but he’s not getting the chance. Instead, we’re getting the same thing over and over again. Next week, it looks like House will be back at the hospital, doing the same old thing that he did before. I'm extremely dissapointed that a show with such brilliant potential has become stuck in a rut.