A few friends of mine have recently discovered or announced that they are having babies soon. Well, soon in the usual gestational sense.
Sometimes I get a sense that people are hesitant to tell us that they're having a baby. (Not these friends, I just mean in general.) I can understand why. Our friends know that we wanted a second child that we were never comfortable in risking. We've made peace with that, I think, and yet there is a tiny little bittersweet tug when talk turns to babies. We always thought that Schuyler would have made an incredible big sister.
We've also read too many sad stories of kids with polymicrogyria manifest much worse than with Schuyler. Gambling with that possibility was more than we were willing to do. And of course there's the ever-present likelihood (85-90%) that Schuyler's current success and sweet happy life will be rudely interrupted by seizures, maybe bad enough to hurt her. Maybe worse than that, even.
So we set ourselves to life with an only child, and that life is rewarding in ways that offset the monster. Schuyler doesn't know how spooky the future is, but even if she did, I can't imagine she'd give a damn. She cheerfully defies expectations, she takes up the fight and she's not complacent, either in school or in her ever-present quest for perfect play. She's living her life turned up to eleven, regardless of my own shortcomings.
I guess that's the other thing that makes people hesitant to talk of babies with us. I know that when I was an expectant father, seeing children with disabilities bothered me, although I would have been ashamed to admit it. I wouldn't have wanted to face that future, and I especially wouldn't have wanted to give much thought to whether or not I was up to the job as a father.
Special needs parenting is a daunting prospect, a sneaking monster that almost no one thinks they'll have to face until it lands on them with both clawed feet. Seeing how things could go down is hard. Wondering how they're going to be even without that possibility is hard enough.
In a world where such conversations would be polite, I would tell future parents the truth as I know it about parenting, even though my life as a father has been so different from most, even from other "shepherds of the broken". My truth is my own, but here it is.
No, I wasn't ready for this, but then, I wasn't ready for any of it. I wasn't ready for Schuyler to turn yellow a few days after she was born, requiring the funky Jedi light blanket on Christmas day to lower her bilirubin levels from their frighteningly high levels. I wasn't ready for her to run headfirst into a shelf at Borders one day and give herself a mild concussion when she was just learning to walk (in that "walk means lurch at high speeds" phase). I certainly wasn't ready to sit up with her in the hospital after her emergency surgery to relieve a painful abscess brought on by a nasty staph infection. It hasn't just been the monster that has snuck up on me.
But here's the thing. I also wasn't ready for her to burst out in loud, wheezing laughter for the first time, in the shadow of the World Trade Center almost a year before it became the saddest place on earth. I wasn't prepared for the first time she noticed my sadness at something and took my hand, kissing the back of it and patting it gently. I wasn't ready to hear "My name is Schuyler" come out of that first primitive box of words two years ago. Nor was I prepared to learn that she knew how to spell her own name (at a time when her teachers believed her to be unreachable) simply because she just started spelling it one day while we were sitting at Barnes & Noble, eating a cookie. And I don't believe Julie was ready to hear Schuyler say "mama" successfully for the first time a few weeks ago. (If she's not thinking about it, it comes out "mama". If she's trying, she trips herself up a little, coming up with "mwa-mwa". And "daddy" is just out of reach for now.)
I wasn't ready for any of this, and new parents just have to accept that they're not ready for any of whatever comes their way, either. Some parents find out the hard way that they shouldn't be parents, and some never realize it at all, living in a little fog of denial. But I think those parents are the exception.
For most new parents, every day is about learning, and while sometimes you'll learn the hard way, those lessons almost never leave a mark. Be prepared to learn from your kid. Be ready to encounter a lot of poo. Accept that while everyone else's saliva is gross, your child's is pure liquid delight. Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused. Be ready for lots of scrapes and bruises and mysterious injuries, and have lots of Sesame Street Band-Aids on hand.
And most of all, know that even if you get a child who talks and who does everything in the world exactly right and meets your every expectation (selfish and otherwise), that kid is going to have unfathomable secrets.
Schuyler carries more secrets than most, but every now and then she will share one, and those moments, more than anything else, make my life worth living.
"Deal with the concept that a half-chewed McNugget offered to you in the spirit of generosity is a gift that shouldn't be refused."
ReplyDeleteGah I love the way you write Rob. Sometimes you can really put things in my own life in perspective for me.
I can't wait to read the book!
Wow, this is awesome. And you are so right. As a mom of two special needs kids, I never knew what hit me. But by the time I realized what was going on, I was so in love with them I couldn't imagine things any different. Perhaps that isn't exactly right. I don't know. I do feel as though you have put into words things I have felt many times.
ReplyDeleteSomething that I've thought ever since I started reading, back in the hamster-rearing/darn-tootin' days...I've always been so grateful that Schuyler was born to you and Julie. While my childhood problems weren't nearly as myriad as your beautiful daughter's, I too was a very gifted, very damaged child. Without my parents I don't know what would have become of me. I didn't think it possible, but it comforts me to know that there are parents even more amazing than my own out there. The way you and Julie care and love Schuyler, never accepting or letting her accept that there's something that she'll "never be able to do". "Can't" just isn't a word the Rummel-Hudsons can say...and I thank the stars that your little girl is so lucky. Never forget the amazing and positive impact you and your wife have every day...it's the reason your daughter is so heartbreakingly amazing.
ReplyDeleteI hear you on the bittersweet.
ReplyDeleteAlso, I think this is one of the most eloquent entries you've ever written. Were you wearing your fancy pants at the time?
Thank you so much Rob. What a wonderful way to put it.
ReplyDeleteWow, your words have made a lasting impression on me! I was just reading an article in People about a ranch in Elgin, TX for young adults with downs syndrome. My boyfriend and I were heading to Austin last weekend and we passed through Elgin and I shared the story with him. We talked about all the "what ifs." He reassured me that God doesn't give you anything you can't handle. Since I have type 1 diabetes, I worry about my children developing it. But sometimes I don't stop to think it could be something totally different, something I am not familiar with. Something I know nothing about. Something to learn from my children.
ReplyDeleteRob, have you and Julie ever thought about adopting a child?
ReplyDeleteRob
ReplyDeleteYou've a way with words. Man, this post just killed me.
I second Amy Lynn's question.
As father of three adoptive children and three birth children, I'd say getting there is different but the net result is just exactly the same.
Secrets, heartbreaks, gratification, and all of the trappings of having a child are just the same regardless of how you're blessed with one coming into your life.
We've discussed adoption before, and it comes up every so often. The cost seems prohibitive, although perhaps that's just an urban myth.
ReplyDeleteBeautifully written, Rob. If one of our friends has a child with special needs, I'll ask you for permission to print this and put it in a card.
ReplyDeleteIt sums up so well the unpredictability of all parenting, and of special needs parenting (I love "shepherds of the broken") especially.
What a great entry, Rob.
ReplyDeleteI just wanted to share that tomorrow on the Today Show, Meredith Vieira will be doing a piece on the monarch migration. I thought of you right away:
http://meredithtoday.ivillage.com/entertainment/
I was thinking it too.. have they thought of adoption..
ReplyDeleteIs it a myth that adoption is so expensive ? I wonder that too. I think it can be expensive but it can be affordable too. I have a few friends who are foster parents and one is about to adopt their foster child- and it's not expensive at all.
Anyway--
I do agree, Schuyler would be an incredible big sister.
altarflame.livejournal.com
ReplyDelete"Mama", after all these years! What a moment that must have been!
ReplyDeletethis is one of the favorite things I've read. In quite a long while.
ReplyDeleteI'm about to have my third child, and what I know this time is that I know I'm not prepared. In that ironic way I am ready for that which can not be prepared for.
it never gets easier or less scary or less delightful or less emotionally stunning to have a child, not even the third time around.
Rob:
ReplyDeleteAdoption being expensive is not necessarily an urban myth. I'm an attorney who has worked with clients to adopt children in the past, and I know that costs vary widely. If you look in the right places, though, it's not so expensive. You might check out religious organizations that offer adoption services. (I know this probably isn't precisely the way you'd want to go about this--me neither--but I have clients who have not been affiliated with any church or religious group that have adopted that way.) Generally, these sorts of groups are more charitable, provide for the costs of the mother, and just make the children available for adoption to make sure they find really great parents. If I can help direct you to some of these organizations, let me know. I'll be happy to give you my e-mail address if you let me know how to get it to you privately.
Jennifer
Very wise words Rob
ReplyDeleteAs a parent of an 11 year old child with special needs, I couldn't have put that better myself.
Hope you are all doing ok...take care and lots of cuddles to Schuyler (she gets more beautiful everyday)
Heidi xxxxx
http://thefrostfamily.co.uk
I always tell new parents... You will be a first time parent until the day you die. Even if you have six kids, there will always be firsts.
ReplyDeleteI love this entry. Made me a little weepy this morning. Thank you.
Sandi
I remember those abcess posts. That was scary. She was so lucky to have you there. She still is.
ReplyDeleteAnd it's true (for just plain old parenting), you can't really prepare for it. But like a lot of things, once you're in the middle, you stop being scared and just do it. Eventually. I think sometimes I want to have a second one because I was so freakin' terrified the first time that I didn't enjoy it at all for six months or longer. Now I see other people's tiny newborns and feel wistful, because I can barely remember that time with Nathan; all I remember is a constant feeling of panic.
A friend fowarded on your story that you wrote for AAC. Loved it, when i have the time will be reading your blog. All 3 of my have speech and language difficulties plus other little extra's to keep thing lively.
ReplyDeleteI really enjoy reading your blog. My fifth child and only girl is 10 years old and she is a special needs child.
ReplyDeleteTrue. However, in my experience the size of my friends hearts and brains were revealed. Example: Can I hold your baby? My Special daughter LOVES babies... this still persists!
ReplyDeleteSchuyler said "mama!"
ReplyDeleteThat's awesome! I'm so glad, for all of you. That word means so much, I now.
I remember your entry (a long time ago) that sort of opened up about your concerns regarding Schuyler. I think it centered around wanting Schuyler to say "mama" for Mother's Day. It must feel wonderful to have heard it now.
I finally found you!! I have been looking for this blog/site since August of 2006. My son moved to Oregon and remembered a sweet little girl and her father that he waited on at California Pizza Kitchen at Willow Bend Mall location. He had been told about the blog by his boss and he wanted me to get a copy of it (for a keepsake!!) Anyway, since it is no longer on the page, I was wondering if it is in your book (which I am going to buy anyway!!) or would you be able to email it to me so I can forward it to him? I know this sounds weird, but I was so proud of him because we have taught him to love everyone with the eyes of Jesus, because God made each of us in our own special way and it sounds like Schuyler is a VERY special young lady!! I am a school teacher at a private school in the area and love kids, so this book really interests me! Now that I have rambled on, I can't wait to hear from you. My email is trudyreed2@hotmail.com May God bless you both!!!
ReplyDelete