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One of our daughters has an adored, beloved baby who isn’t progressing as fast as her other children.  Because smore and more parents have children with a wide array of learning delays and disabilities, we thought you might enjoy this mom’s thoughts!

Note: As you read on…know that little chubby foot was broken!

Real Life

Lucy’s not taking steps anymore. She did so great one day, then tried to build a tower with soup cans the next and one of the cans fell smack dab on her poor foot. (Yeah, I know, don’t let her play with soup cans..but you try taking cans away from a baby who is so incredibly delighted that she can build a tower with them. It’s tough!) Now she won’t put an ounce of weight on that foot. I took her to the doctor for an x-ray this week and they only saw a lot of swelling…no break. Now, is that due to the fact that she screamed bloody murder while I was trying to get her to hold her foot super still and the x-ray is just so darn blurry they can’t tell, or is she really ok? One step forward, two steps back.
I feel like I was introduced to "real life" as I was sitting there a few weeks ago waiting in line for my girls to get their ears checked and watching other parents deal with kids with much more significant issues than Lucy has. It suddenly hit me: I’ve been living in a dream world with my first four kids. Every one of them has been right on developmentally. One week they learned to play peek-a-boo. The next maybe they learned to give kisses. Then they started saying words which were added to one by one, then ten by ten. This was normal. This was life. Now suddenly I have to re-think development. Lucy will learn something and then forget it. I’ve never thought of needing to practice the new skill over and over again to make it something that lasts.
I watched those other parents in that waiting room and thought of what they’re going through. Are they ok? I think of all my totally healthy kids and realize I’m not thankful enough for health. For the quality of life we live because my kids can run and breathe and jump and talk as they should. We have no oxygen tank to lug around or emergency shots sitting by in case one of them eats a peanut, or inhalers or wheelchairs or walkers to deal with. My kids run to the bus, play tennis, eat junk food, do flips on the trampoline. That was my real life. But now things are a little different. I appreciate all those things a little more. Lucy is probably fine, but some of those kids in that waiting room probably aren’t. And my heart aches for them. And then what if Lucy isn’t fine? What if there’s more to it than a little delay? I called my sister-in-law who is a speech therapist for advice on my way home and left a message for her. As I said the words "Lucy has qualified for speech therapy" I couldn’t help getting a little choked up. This is my baby, and she needs more help than I can give her.
And now she qualified for physical therapy too, and I’ve had the toughest time trying to find an opening with developmental speech therapist…in and of itself worthy of another story for another day. Man it’s rough to get a spot even when qualified. But that is my new "real life" along with rice milk and gluten-free pretzels, and I’m telling you, it’s ok. Because it makes me love this little girl even more, if that is humanly possible. I love to concentrate on her and focus on really helping her any way we can. I love that these sweet ladies can come to our house and teach me how to teach my daughter in a way that I’ve never thought of before. It’s a whole new way of thinking. I love that I can then teach my kids how to teach our baby. I love to watch them dote over her and cheer her along.
This morning Lucy had her MRI. No parent should really have to watch their baby disappear down the hall with a random nurse to be put under anesthesia…twice. (We’ve already been through that once for her toe surgery when she was six months old.) That’s such a helpless feeling. But she did fine and we’ll see what our results are tomorrow. She’s a cherub. I can’t believe those humongous cheeks haven’t been kissed off yet. And I couldn’t be more thankful to share with her my new version of "real life."

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