|Read this post that another blogger wrote........|
Wednesday, September 26, 2007
Sunday, September 23, 2007
Ella on her spin and bounce zebra, so proud being a big girl!
Thursday, September 20, 2007
|My mom called me the other day and said that my cousin had left a message on her answering machine saying that she had just read an article in a magazine about a child with Down syndrome. Woo-hoo!!! I think it bothers my mom more than me but how annoying is it that as a magazine addict (especially any having to do with parenting) I never see a picture of a child that looks like my Ella, or read articles about them? So, we were quite overjoyed and set out in desperate search for Baby Talk magazine, and do you think we could find it, NO! Anyhow, I did find it online and thought I would post it in case anyone missed it! Enjoy. (It says at the end that the author is publishing a book next year about raising her son with DS, can't wait!)|
A New Song Parenting my son with Down syndrome isn't a trial; it's a joy
By Jennifer Graf Gronenberg
I once read that coyotes howl and yelp to keep in touch with each other, and that their songs are a celebration. I am always surprised when I hear them, songs that are beautiful and chilling and sad and exhilarating all at once. The sound resonates deep within me. The longing, and belonging. Coyote songs remind me of listening to opera — I don't understand it, but I do.
At the end of each summer, my friend Sarah throws a deck party. She invites women from all over the valley; some faces I recognize, others I don't. Early in the night, I find myself speaking with a woman I know only a little bit. She asks what I have been up to, and I tell her about Avery. As soon as I reach the part about Down syndrome — the genetic condition that affects cognitive development and can cause other health issues — she gets what I've come to think of as That Look. It's as if she slipped on a Halloween mask, behind which she retreats as she tries to think of something to say. The woman I was speaking with is gone, and in her place is the yellow smiley-face icon. I instantly feel bad for her. I see that she's struggling. I intervene. "It's okay," I say.
"You must worry," she says, after a moment. "I mean, every parent worries. You must worry."
Her comment is a new one, an observation I had not heard before. Usually it's "I'm sorry" or "You're so brave" or "I couldn't do what you do" or my least favorite, "God only gives those children to people who can handle them." I dislike these remarks for reasons that are obvious to me — I am not sorry, I am not brave, and I don't do anything that any other parent wouldn't do. The last one, in particular, implies that my son is some sort of punishment, or a trial. I don't think of Avery as either.
But tonight, with the summer breeze floating gently across the lake, in the safety of Sarah's warm and friendly home, surrounded by many of my closest friends, I want to give this woman a real answer to her question, not a platitude or a cliché. I think for a moment, and what I feel surprises me. No. I am not worried about Avery.
I worry about my eldest son, Carter — he is gentle and sensitive, which are qualities that I respect but that cause me motherly concern. Sometimes I wish I could teach him to protect himself more, to take his heart from his sleeve and wear it inside, safely shielded by his rib cage. My youngest boy, Bennett, is fierce, and while I admire his daring, it also gives me pause — how will we make it through the teenage years? But Avery? I worry the least about Avery.
One evening, I am reading a book on the couch. Carter wants me to get him a glass of milk, which he can do himself, but he wants me to do it, to stop reading and pay attention to him. I mumble something about "in a minute," vaguely aware that I am raising children who are jealous of their mama's time with books. But I also believe they'd be envious of anything I did that didn't include them, even if it was mopping the kitchen floor, and at least this way, there is a chance that my love of books will be passed on through osmosis. So I continue to read.
Bennett is next, also wanting milk, a copycat of his older brother. In fact, I suspect there might be collusion involved with this second request. "One moment," I say, holding up my index finger, still reading. I am aware that Avery has pulled up next to me. He sits beside me. I am still reading. He sits quietly. I am transfixed, carried away from my life by the sentences of another woman, in another place, at another time.
Carter and Bennett have moved on and forgotten about me, about the milk. Avery strokes my hair. He is there. Avery is still beside me. He is wiggling, or something. I am busy. He is wiggling again. I turn the page. He reaches up, places each of his two small hands on my face and gently turns it from the page toward him, so that we are eye to eye. Then he signs "Milk." He wants milk, too. Where the other boys have given up, Avery has stuck with it. In his single-mindedness, in his desire, in his knowledge of his desire, he has persevered. In his own way. In his own time. Which, as it turns out, is the right time. Time enough for me to lift my head out of my book and give my attention to my children, who, after all, have been very patient. Especially Avery. This is why I do not worry about him. Avery will find his way.
Imagine this: I am at a party having a conversation with a woman I barely know. I mention that I have a child, just a normal child. Would she pull out the smiley-face mask of empathy and pity and confusion? I don't think she would. I think she'd tell me about her children, or if she were childless, about her nieces and nephews. Why is there a difference? Is it so hard to think of Avery as a child, first? Is it impossible to think that in addition to bringing us challenges, he also might bring us joy? Is it so difficult to imagine a life with Avery, who is the first person I know who truly marches to the beat of his own drum? Sometimes I think Avery will find a way for all of us.
So I worry about a lot of things, but not Avery. I try to explain this realization to the woman, but the point is lost. Her genuine curiosity is gone and I am talking to the smiley-face again. It is a party, after all. The sun is warm and glowing and the stars are just beginning to come out.
Sarah has lit a dozen white votives in glass jelly jars, and I place them along the railing of the porch. The night is filled with the sound of women's voices, and laughter and music. In the midst of these women, I think of the coyotes. Calling to each other. Finding each other. Belonging. My song is the same as the other women's, mostly. But toward the end, there is a new part. It is a refrain in the key of Avery. I am not sorry. I am not afraid. I like it. It is strange and beautiful all at once, and if you let yourself listen, you might not think you understand it, but you will.
Jennifer Graf Groneberg lives with her family in Montana. Her book, Road Map to Holland, about parenting Avery, will be published in 2008.
Babytalk, September 2007
Monday, September 17, 2007
So I look down and the next line says, God makes no mistakes, and I began to cry and of course can not stop. Chris sees me crying and hands me Ella which of course makes me cry harder. I don't know why it effected me so, I know that Ella is no mistake, she was definetly sent here to change me and everyone that she comes in to contact with. But I had to think back to last year and how incredibly devistated I was, and I just knew that God had made a huge mistake because I was not good enough to raise Ella. Oh how a year has changed me. Ella is the biggest gift, a true blessing.
Thought I would share a few of my favorite old pics. This last one is my hubby favorite, it looks like Ella is beating up on her big brother!!
Saturday, September 15, 2007
|SORRY FOR THE WEIRD SPACING, CAN'T FIGURE OUT HOW TO FIX IT!|
Friday, September 14, 2007
I KNOW that when we go back to the ENT on the 25th he is going to want to discuss taking out Ella's adenoids, which he brought up a couple of weeks ago. Here is my problem with that, my mom met a couple that has a 2 year old with Down syndrome in the Seattle airport, the mom and have emailed a couple of times. Anyhow, she said that her daughter had her adenoids removed when she was 14 months old and has had major swallowing difficulties since, they have to add thickening agent to every liquid they give her. Obviously I do not want that problem. However I also do not want Ella to continue getting sinus infections, the kid has enough problems breathing out of her teeny tiny button nose without thick gunk in it. Poor baby.
Along with her recurrent sinus infection has come a lovely rash. Okay, not so lovely, it is covering her entire body from the neck down with a few little dots on her face. It is the weirdest thing, they are not raised and seem to not bother Ella at all, of course that doesn't necessarily mean anything because she is not bothered by most things. The "doctor" on base said that it could mean that she was exposed to Strep but if that is the case than the antibiotic for her sinus' will treat it. Ugh.
Also yesterday (boy what a fun day) we went up to Oklahoma City to Ella's appointment with the endocrinologist. The good news is that as of right now he doesn't think she needs to be treated. The bad news is that he wants her retested next week, Ella and her chunky little arms are not easy to get blood out of, but she doesn't cry anyway. So, the doctor said that if her levels are the same as they were in June than we will just need to retest her in a year, if they have gone up again than he will treat her now.
Now with all my whining done I have to say that it has really sunk in with me this week how incredibly blessed we are when it comes to Ella's health. Ella is a fat, happy, healthy baby and we are so grateful!
Tomorrow is the girl's birthday party, Ella Savannah and Cana all turned one within the past two weeks and we thought we would celebrate together. We are so excited!! So, I will definitely have pictures to post tomorrow!!!
Tuesday, September 11, 2007
Sunday, September 9, 2007
This week will be busy, not as bad as last week, but busy enough. My friends and I are throwing a 1st birthday party for our three girls on this coming Saturday so we will be getting stuff ready for that. This Thursday we have to drive up to Oklahoma City for an appointment with the endocrinologist for Ella's thyroid, so I'm interested to see how that goes. Well, that's it for now I'm going to go relax with my family. Here are a few pics of Ella and her baby doll that she got from Hunter for her birthday, she loves it and drags it around on the floor with her and covers it in big slobbery kisses, it is so cute!!!! OH YEAH, I forgot Ella learned how to sit up from laying down this past Tuesday and it definitely makes her much more content to play on the floor, we are so proud of her!!!