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"The problem with the world is that we draw the circle of our family too small." --Mother Teresa

Friday, July 13, 2012

Happy 3rd birthday, Moriah


Today is Moriah's third birthday. I have been a very unfaithful blogger, my writing saved mostly for my doctoral classes, my dissertation, a handful of articles on their way to publication, and my personal journal. But today I wanted to write again, because Moriah's birthday is always for me a big and meaningful milestone.

It is afternoon here in our little bungalow. It is so quiet I can hear the rustling of the leaves of trees across the street, the chirping of robins in our yard, and the whirring of the living room ceiling fan. Moriah is asleep--she still takes naps, usually an hour or two, which may mean I have only a few minutes left of this quiet time. Jason has gone to Lowe's--what started as a pipe clog has now become a structural project (and this the day after we've returned from our 15th anniversary trip to Nantucket...does anyone else seem to suffer so soon upon return these crazy incidents that threaten to steal whatever rest and re-connection you may have gained by "being away"?). Our sons are not home, but we are. I love summers for this--the extra time Jason and I both have, because we both are not in the classroom, and the family time we can try to snatch between the busyness of managing three children with lots of needs.

It has been another remarkable year. I'm unable to blog about all that has transpired, mostly because we try so hard to protect our boys' privacy as much as we can, but we've had so much happen that has caused in me a visceral reaction, a sort-of-rejection of my own life, I'm sorry to say. I'm sure you've had these moments, too. Things so crazy, so tragic, so surprising happen, and you think, "Really?! This is really my life?!"

Even today, Moriah's third birthday, is a small example of that. We began well--Jason and I went together with Moriah in the early morning hours to a hospital about 40 minutes away for her weekly pool therapy. At 8am, we are sitting by the pool and watching the PT try to get Moriah to work. Moriah's not having it. At 8:45, we are changing Moriah, only to find poop all over her diaper and swimsuit, towel and hospital linens. Sigh. We clean her up. She throws some fits on the ride home, angry that we are driving the fuel-efficient car instead of the minivan, which means she can't watch her Elmo in the car (I find these DVD players to be both a blessing and a curse). She is angry still when we get home. She hits and throws. She sits in time out. She yells. She demands what she wants. And I look at her, I'll admit it, and I think: "Really?! This is really my kid?!" There is fear there (is she going to turn out like other kids with DS I've heard about who have significant behavioral issues, or is this just a stage?), and there is frustration, and there is weariness, and there is disgust.

And guilt, of course, because I'm a mother, and it's my daughter's birthday and I should be ENJOYING her for goodness sake! And worse: We've been away from her for 4 days on our anniversary trip (oh wait, did I already mention we went to Nantucket? Maybe because I'm thinking I should just go back...) and shouldn't missing her have lasted a heck of a lot longer than this?

But Moriah is, after all, 3. And she is her own person, that's for sure. It's sort of what you get when you have a kid, isn't it?

So I pack her into our minivan (wishing for Elmo to save me, please, from her tantrums) and take her to a local farm. We pick out peaches and blueberries and local honey, tomatoes and corn on the cob (she loves corn on the cob) and zucchini. And as I'm putting her back into the van at the end of our farm trip, and she is arching her back in such a way that I really think I might drop her, because she is angry to leave the very stroller she didn't even want in the first place, I take a deep breath and think, "This is my life." I give her a farm-fresh peach, wiped off on my shirt, and am thankful when she passes it to me a few minutes later. We eat it, back and forth, on the way home, and for a few moments, we have quiet, and connection.

Lots of people like to tell me how amazing Moriah is. How adorable. How smile-y. How happy. How loving. How friendly. How hug-gy. How kiss-y. She is all those things. And sometimes people will talk about Moriah's purpose in life, how she has much to teach us, how maybe the point is not what she has left to learn, but what we can learn from her.

This is not always an easy perspective for me, the one who is usually tasked with coordinating her educational and medical care. And I'm skeptical of people who want to whitewash the world of special needs, and gloss over the very real grief we parents experienced--and sometimes, still do--about the things our kids are missing, or will miss.

But watching Moriah eat a peach in the rear view mirror today, I'm giving in. This is my life, wild and crazy and way too full. I choose to be here, in it, and to accept it for what it is (which is, mostly, totally nuts and not at all what I thought it would be when I started this marriage 15 years ago). And in honor of Moriah's third birthday, I'm going to say YES to all the things she is teaching me, because I'm learning a lot from her, even cranky-crazy her.

In fact, here are a handful of things I'm learning from Moriah:

1. When eating, ENJOY food. Smack your lips. Say "Mmmm!" with a satisfied smile. Slurp your drink. Understand that food is food, but it's also nourishment and a sign that someone loves you, to care for you so well. Eat heartily.

2. When you have a chance to move, do it with abandon. Spin. Hang upside down. Throw out your arms when you run. Dance with your head, your hands, your hips, and your legs. And when therapists tell you you're not doing walking "quite right," walk anyway and trust that these things figure themselves out in time.

3. Sing to most songs, especially when you can't say the words, or don't know them. Sing anyway, and whenever possible, add motions.

4. Give hugs liberally.

5. Laugh everyday for no reason. And get other people to do the same. (Making "scary face" is a really good way to do this, as is getting right into someone's face and just giggling).

6. Cry when you are sad. Cry, and ask for a hug, and when it passes, be done with it, and move on.

7. Sit next to a bookshelf everyday and read something.

8. Make some drama. Why not?

9. Make art out of whatever you have on hand (though we wish Moriah wouldn't do so with poop quite so much). In any case, if there isn't a lot of beauty around, or you spy a blank wall or a white sheet of paper, realize it can be improved, and get to it.

10. Wear a swimsuit to bed (see #9 about poop art).

11. Pray each evening, and pray only thank-yous. When you're finished, shout "Amen!" to express to God that you are really, really thankful.

12. Be convinced you can do way more than you can. For example, if your brothers are playing basketball, be very sure you can insert yourself into their game. Run onto the court and try to dribble the ball. Don't worry, eventually someone will pick you up, lower the hoop, and lift you to make that dunk. What you don't have in skill, make up for with faith, confidence, and curiosity.

13. Be an optimist.

14. When someone is crying, pat them on the back and offer a hug. Ditto for friends who are angry and having tantrums.

15. Share. Always.

16. It is really, really hard to say you're sorry. But you always feel better afterwards.

17. Be Jason's biggest cheerleader and fan...every man deserves a daughter who reminds her mom of this one.

18. Kiss yourself in the mirror every day, because really, are you every going to be any more beautiful than you are right now?

19. Be totally imperfect, and totally okay with it. Sometimes, when someone is saying how cute you are, blow them a haughty raspberry. Or, when you are in the middle of a tantrum, give a hug. That way, people around you remember you are both amazing and completely crazy.

20. Be fully present to your life. If it hurts, cry. If you don't like it, say so. If you need something, ask. If it's funny, laugh. No matter what, be happy that you are here, because too much has conspired to make it otherwise, and you are a lucky girl, and your life is a gift and full of many graces.

Happy birthday to my girlfriend. You are turning out to be one heck of an amazing, precious gift.

I love you.
Mom
July 13, 2009

6 comments:

Stefanie Rohman said...

Hi cousin. That was beautiful!! Thank you for sharing!! I want to live more like Moriah too!!!

Jane said...

Hooray for you and for Moriah, so blessed are you to have each other in this crazy world of ours. Much love to both of you.

MJ

cindy Sentner said...

I praise you melissa for being her strength, her Mom and care giver. There should be more parents like you in this world. After working with special needs for 14 years and seeing the families abandon their children because of their disabilities. I applaud your whole family for everything you do for Moriah.

Much Love Cindy Sentner

Anonymous said...

Missy,
You have always been, and continue to be, an amazing inspiration to those around you. Thank you for your realness, and how you see the world with both love and honesty. Moriah is a reflection of the gifts you give the world yourself--you remind us of the important bits, the core of it all...and we all need that reminder! <3

Sue Petrok said...

Melissa,

As a mother of a special needs child myself, I can vouch for the fact the many internal struggles that you contend with are justifiable and, in my opinion, also completely normal. I can remember times when Billy was about Moriah's age, sitting on the couch in the living room when he was quietly playing in the family room a few rooms away, thinking to myself, "If I could just sink into these cushions... disappear... if I am quiet enough maybe he will forget that I am here." These thoughts no sooner went through my mind, and then were quickly followed by 'guilt'. "I'm a Mom. I'm not supposed to feel this way about my child. This child that other say is so wonderful." Billy is my greatest joy, my greatest frustration, and my greatest inspiration all at the same time. He has inspired me to rise to the occasion more times than I can count, has been the catalyst of my finishing my bachelor’s degree and then going on the work on my master’s degree.... simply put - I am a better person because of him and his trials and tribulations. In the end, it is these very trials and tribulations that form and mold us, and that prepare us to move forward to whatever the future holds for us. The strongest steal is forged under the hottest fire.

Sue Petrok

The Lincicums said...

Oh Missy, this was beautiful. Thank you for sharing it.