I chased Ella today through Trader Joes today. She had one of those mini carts that fits just right, filled with things she loves like hummus, tomato soup and Candy Cane Joe-Joes. I like watching her walk through my favorite place with authority and confidence. Right now, she doesn’t remember all the things that stress us out.
I’ve been finding myself a bit lonely lately. And to be honest, I’ve been feeling quite sorry for myself. My mind is attempting to wrap around ideas like “your child may never talk” and “she might need a computer as her main source of communication.” I’m finding it quite difficult to do. I’m unsettled. I do not want to accept these things as my reality. I’m still hopeful. I’m still ridiculously hopeful on most days. Or at least I’m trying to be. Or at minimum I’m breathing most of the time.
The constant comment lately has been to the tune of this: Ella’s tongue is too small.
And of course, as the one who cannot afford to give up, I got a second opinion. And a third. And a fourth and then I just stopped asking. And I stopped praying. And she stopped asking me to pray for her tongue, too.
Next, I got pissed. Why the hell does my kid have to have all these problems? Why can’t we have some resemblance of “normal? Why does everyone else’s kid talk so well?
You should see me as I watch these early talkers I often meet—just like my Owen. I eat up every word they say, listening to the intelligibility and articulation. But then, those feelings quickly turn to jealousy and anger and then we do a full swing around to sorrow. I know I’m not the first person in the world to go through all this, but it feels like it. And my brain can’t make my feelings change their mind.
Ella’s surgeon, Dr. Dan Danahey—or “Hi Ang, this is Dan” as he says when he calls me on the phone—recommended we head to a major medical center for a fresh perspective. We have the best therapists around, but wanted a non-emotionally attached opinion. I made an appointment with the cranial-facial clinic at Peyton Manning’s Children’s Hospital in Indianapolis. We were to see a Speech Therapist who would listen to Ella talk and give us an extensive amount of big words that were all going to be a filter for the 2 words I was looking for: yes or no. Everything else is just fluff.
If it wasn’t one thing this morning, it was another. Ella had no clean shirts, I had no clean anything. I had to pick up a prescription for my Dad and also one for me. Owen had to be at school at 8:30 today, which we found out at 8:15. And while I was sitting lazily in CVS' version of the massage-chair-from-heaven, I got a call saying the Speech Therapist is sick today and they would like to reschedule. In my moment of peace, I said no problem. When I got to the car and told Nick, he was not so peaceful. He promptly reminded me that all the arrangements and us taking the day off cost us several hundred dollars. This was a good point. He got back on the phone and within an hour, they had found another speech therapist that would be coming to see us. They apologized and we were on our way.
I worried about lots of things on the ride down to Indy, like where we would eat lunch, would my friend get the job, would we have time to buy cookies from Trader Joe’s? Nick is rather charming and instead of saying “You need to be in a home,” he said “You need some shalom.”
Peace—does that exist anymore? I had a hunch it did and hoped I would feel that someday.
I hate the waiting rooms where you have so much time to think about all the possible outcomes. Ella was nervous, as I mentioned to her that someone was going to be looking in her mouth. As cute as humanly possible, she yelled “Oh no!” and covered her mouth with both hands.
I was feeling a bit overwhelmed/nervous/tired/ and prayed that God would hold me in the palm of his hand during our appointment, that I wouldn’t feel alone anymore. I also resolved to cry if the information warranted it and to not be afraid to do so. I figured it was probably not the first time a parent snotted all over the room and probably wouldn’t be the last.
And to be honest, I don’t remember much about what was said by Nina, although she is very knowledgable and wonderfully nice. I was too busy trying not to keep the tears north of those dark circles that seem to be taking over my face these days. And so finally I said, with voice trembling and all, “Do you see any reason that she shouldn’t talk well/normal eventually?” And to my joy, she said no. I had to keep my eyes off Nick from this point on because eye contact would have caused a serious leak in all of our wells.
We walked to the car a little lighter than we had walked in. And before I knew it, we were searching for Candy Cane Joe-Joes at Trader Joes, following Ella as she confidently threw the things she loves in to her cart.
And I felt a little bit of Shalom. And it wasn’t all so lonely.
We both agreed that all we needed was the possibility that all could be well. That one day this mess of a situation would be in our past and something that is just a story to her. And she heard those words too. She knew what Nina was telling her about her future and I wonder if that didn’t take a way some limits for her that day, too.
In other not-so-coincidentally related news, Ella said some new words this week like “yee-haw” (pronounced mmm-maw) and back pack (wack-pack). She even said with utmost seriousness, “Oh no, I left Dora in my room!” which was heartbreaking enough to send Nick up 3 flights of stairs to get it. Never mind that “D-D-D-D-D-D-Rora” was lost somewhere in Ella’s womb, (room) I was so proud of her for trying. I hope that will continue on to her school. And I hope the kids are gracious to her.
We received a $10,000 computer in the mail this week. In its most computerized voice, it speaks the words my child cannot. Easter Seals was generous enough to loan it to us to see if she likes it, which saves us from a very expensive trial and error. And I’m afraid she does, as her joy level is increasing as buttons pushed yell things like “I don't like that” and “My name is Ella.”
Actually, she has been pushing the “Leave me alone” button quite frequently. We are also hearing a lot of “I’m mad and I’m going to my room.” Dang. She seems to finally be saying what she has been wanting to say.
It’s all so jacked up. It is not normal or comfortable or something that is easy to grasp for me. But, it brings a little shalom to a 2 year old girl who was in desperate need of some.
In turn, bringing some peace back to me.
May you feel much shalom this Christmas. May you not get too wrapped up in traveling and presents to remember that Jesus came to give us abundant peace and overflowing joy. He always comes when you call, grieves when your heart breaks and loves you even though you’ve got more issues than Sports Illustrated.
Have a wonderful Christmas. Thank you for reading this year, even when it was hard to write and in turn, hard to read. Love to you.
