Monday, February 27, 2012

Small steps over time....

It is fun and exciting and scary at all once, watching my sweet girl growing up. She has gained SOOO much independence this year. While it occasionally poses a problem (like when she packs a bag, grabs my car keys from the mantel and says, "Bye, Mom! Emma go hotel!" and opens the front door...but, that's another story for another day...), but for the most part, this increasing independence is a WONDERFUL thing to see.

The lessons may take a while to learn, they may require lots of repetition, but she is gaining. I have learned an invaluable lesson along the way: Small steps will cover a great distance over time.

One area where Em is gaining independence is in her personal self-care, specifically, taking her meds. She has done well with this for a while. (Please know *I* still do the dispensing!!) I lay them out in the morning: 2 pills, and 3 syringes (one small, and two large), accompanied by a glass of juice with Miralax. She knows they're there, and she takes them. The nurses at school give her her meds there at lunch time, and when I pick her up from school, I have her meds lying on the counter to take when she gets home. If I don't have her fourth and final dose for the day already out when she is getting tired at night, she will say, "Mom, med-cine!" I go and fill the final 2 syringes and get out the final pill for the day, and she takes it. "All done med-cine!" she lets me know every night.
If only I'd known 4 years ago, when it was a two-parent job to hold down the screaming toddler and force the syringes into her mouth while she squirmed and fought and more often than not, spit out half of whatever we did manage to get in...Those were some hard times. I remember calling my mom more than once, in tears, saying, "I can't do this," and she always said, "Yes, you can. You don't have a choice. You WILL do it. It will get better...with time. Just get through today." And she was right. (As usual!)

Em's keeping her glasses on was another battle I thought I would *NEVER* win. She started wearing glasses at 12 months of age. People told me, "Oh, you're so lucky she got them at such a young age. She'll learn early to leave them on, and you won't have near the trouble later." Well, I don't know about that. She's six years old now, and it's only in the past month that I'd say it wasn't an on-going challenge to not only keep the glasses on her face, but to make sure the glasses weren't being deposited in the garbage, hidden in the refrigerator, stuffed in a pillowcase, dropped in the deep-freeze...the list could go on and on. (Yes, really!) Glasses have been a HUGE (though necessary) hassle. Until recently. Em has finally realized that she can see MUCH better with the glasses, than without them. First thing in the morning, that's what she's asking for, as soon as she's out of bed. And she leaves them on, all day long!

Emma is able to completely dress herself independently, as far as putting items of clothing on. We are, however, still working at tweaking the whole concept of matching. She understands the concept that if a skirt has a pattern with red in it, a plain red shirt will match it, or that any shirt she has will be okay with a pair of jeans or plain black pants. She is, however, quite adamant in her belief that anything that is striped will go with anything else that is striped. I guess she has internalized the concept that "likes go together," and when I tell her, "Stripes don't match stripes," she says, "Yes! Same!" and gets very aggravated with me. So, we clearly have a little bit still to work on, but for the most part, I can trust that when I send her to her room to get dressed, she will come out looking neat and presentable a great majority of the time. And TIME is what it took to get there. Boy oh boy, I could post over 100 pictures of some of Em's outfits from the past. There were some real doozies! But time and a lot of talking and showing and practicing and playing games and looking at books and magazines have paid off, as one more step has been made towards a little more independence and self-determination.

Emma's speech has taken off this past year. She is saying new words almost every day. While she still can be hard to understand (especially for people who aren't around her very often), and has many articulation errors, and continues to refuse to use any pronouns (except the word "me"), I am not discouraged. I see growth; I hear change. I have learned that nothing big happens overnight. It takes time, practice, and most of all, patience. She will get there. I no longer fear "if"; I know know we're just waiting for "when."

Oh how well I remember praying, working, watching, waiting for her to sit up. To crawl. To drink from a cup. To walk. Always small steps....always over time (sometimes a LONNNNGGGG time!)...but they ALL happened. She will get there. In her own time.

Perhaps the biggest change I have seen in Emma lately is the beautiful little person inside that she is becoming. While I am undeniably proud of each accomplishment, every new "thing" Emma has learned to do, I am most desirous that she learns to LIVE LOVE because she understands God's love. I am constantly challenged in my own life, constantly aware that a little pair of eyes is watching me--Seeing what I do, how I treat others, hearing how I speak to them, and she is storing it all away in her mind. When she on occasion behaves badly, I find myself asking "Did she see ME do that?!" It is my daily hope and prayer, my daily goal that she sees me living God's love in action--a care and concern for others and their physical, emotional, and spiritual well-being, not for anything I can get out of it, not for any motive or reward, other than knowing that is pleasing to God.

Last night after supper, I was in our bedroom, folding laundry, and Emmie came in. She touched my arm and said, "Mom, Kank oo mah food Emma eat. Good food. Kank oo, Mom, make mah good food." (Translation: Mom, thank you for the food I ate. It was good food. Thank you, Mom, for making my good food.") I looked at her, and walked out to where Bill was sitting in the living room. I said, "Did you send Emma back to the bedroom?" He said, "No, why?" I said, "You didn't tell her to come and tell me thank you for making supper?" Again, he replied, "No." I went back and hugged Emma and said, "Thank you, Emeline. That is very kind of you to thank me for making your supper. I really appreciate your doing that. That made me feel really good." She again said, "Kank oo." And then she was gone. Back to her room, where she was doctoring Howdy Doody yet again with bandages and tape. (Poor Howdy!)

Small steps. We'll never be the fastest, and that's okay. It may take us longer than most to get places. But we will get there. And we are finding joy in each of these small steps, each of these moments worth remembering.