The thing mamma never did tell you is when those days would come or how they would make you feel.
All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our sofa, that have just accumulated more and more as I’ve continued to slide them over to sit and watch a show. Let’s not talk about the clothes in our bathtub, which has turned into a massive hamper. [forget I even mentioned that, OK?] My other friends with toddlers assure me, these things are normal.
The things I struggle with though are not just maintaining a neat and orderly house where I can find my keys on a regular basis, because I cannot find them. Ever. It’s the daily battles I have with Reagan. Including, but not limited to eating. Eating. The thing I love to do because I’m Italian and it’s in my DNA.
Rob and I dreamed about helping Reagan try all sorts of different food, we dreamed about having meals at home or at a restaurant with our daughter. We dreamed about food because we love it and we love meal time, and now it’s a chore. We did not dream about lugging a g-tube pump, formula bag, tube connection, backpack and formula. I did not dream about having to force feed my daughter food to get her to meet her meal goals. Reagan gets fed four times a day, and lately it’s become my least favorite parts of the day. There’s not much joy in preparing three or four items only for her to throw the spoon, keep her mouth shut, or pretend to take a willing bite just to spit the food into her hands, onto the table or act all gaggy mcgaggerson with it. And sure, maybe this is typical toddler behavior, but unlike most other parents, I can’t just say, “Fine, you’ll eat when you’re hungry!” No, you HAVE to eat. You HAVE to meet these meal requirements. You HAVE no choice. And if you don’t eat, I have to make it up with Pediasure in your gtube. One way or another, the menu goal will win. I don’t want it to be like this, but it is. What I want is for meals to be enjoyable, but I’m filled with frustration, that Reagan most definitely feels, so now, she seemingly eats for everyone but me.
That’s the word that’s been playing in my mind. It started out this morning with our first therapy appointment to work on the speech device:
“How’s the talking, has she started talking more?”
Ummm…no not really.
In my head…“That’s why we’re here with this speech device. So a computer can do it FOR her because clearly we’re failing at helping her to talk, since she’s not.”
Another question (or four): Is she eating more, is her tongue going side to side to move food? Are they doing word prompts? But not just word prompts but prompts to connect consonants to vowels? Like this to help her say things like B aaaaaaaa–B-eeeeeeeee, as she moves her hands prompting Reagan’s mouth into all these different shapes to make sounds that form words.
That’s a lot of freaking questions, is what I felt like saying.
Um, I don’t know, she sort of says baby in her own way so I don’t know that they do all that. The other therapists that come to the home do different things. We have multiple therapists to focus on different things and they are good at those things. But when it comes for us helping Reagan put it together…
Overall, her speech device therapy was good…it just came at me like a bulldozer and I wasn’t expecting it. I came in with a positive attitude and it got flattened pretty quick. I know we need to work on A to Z and then back through the alphabet again. I know that. But even if I do that every day, 24/7, that doesn’t mean the result will happen faster.
After speech, I drove home for another therapy…Reagan’s feeding/OT therapist met us right as we came home from speech device therapy and I was basically in tears over the messy house, over the fact that I can’t have an adorable conversation with my three year old in the car as we ride about town. I don’t know what Reagan would say b/c she can’t say it. I don’t know how she’s feeling b/c she can’t tell me. I feel like I’ve been robbed of these awesome things. The things that make toddlers so stinking cute when they talk and say silly things they can’t pronounce or ask unknowingly inappropriate questions that make everyone laugh. I’m not experiencing that. I’m experiencing another mountain to climb. That combined with a food battle makes for one of those days my mamma told me about.
Rob left work, came home, spoke truth to me and over me, cleaned the kitchen and let me work for an hour and a half to get things I needed to do, done.
But this attack wasn’t done after lunch. No, sometimes Satan just keeps attacking. So I reached out to my friends. They spoke truth over me. And I called another friend while driving alone and aimlessly. “Come to my driveway now.” Is what she said.
And we sat in the parking lot of her community playground and I cried, and I swore and I vented and I tucked my head into her shoulder and just whispered that this is not fair. And she cried and sat and listened. But in only a way that she can do, she turned it around.
Her: How can you be happy at mealtime, Anne-Marie?
Me: I don’t know…It’s impossible basically because I can’t fake my feelings and she’s driving me nuts!
Her: Instead of being frustrated with Reagan during feedings, what if you said things like:
- Reagan, God gave us this wonderful food for us to eat so we can be strong.
- Let’s be thankful we have this food to eat Reagan
- God gave you a spirit to not give up. Don’t give up Reagan, you can do it and eat this food
- Let’s be thankful we can eat and chew and swallow. God healed that part of your body Reagan so that you can enjoy the food that God gave us.
- Try to say (whatever word she’s trying to say). God gave you an attitude to keep going. You can do it Reagan, God will help you.
- God has helped you with your sounds Reagan, so that way you can start forming words. Keep trying, you can do it.
- God made you determined, Reagan. You can push through and make those sounds to form words. You know how to do it…
- You are smart Reagan, show us what you know and let’s thank God for your ability to communicate with words!
Do you know what it’s like to sit with me when I’m spiraling in thoughts from the enemy? Few do. Most of the people I talk with say things like, “you’re so strong, I don’t think I could do that. How do you juggle all these things.”
I don’t…I combust and then there’s a small group of people who can take my F-5 tornado, let it whirl, let it touch down with destructive thoughts, and then can look me in the eye with their own tear filled eyes and speak truth to me. As we sat in the car, she wanted to end with saying things we are thankful for. We went back and forth for a while saying things we were thankful for in our lives.
All day, I was wallowing, and I didn’t want to come back to God…even though I just posted how RELENTLESS He is for ME! Some days it’s just hard, and that’s why we are supposed to lift each other up. We can’t do this life alone, especially in this messy, broken world in which we live.
February 10th, 2016 at 8:37 pm
I can’t even imagine how difficult this must be for you, but thank God, that he gave you such a wonderful support system of friends that you can lean on. God Bless and just keep doing the best you can, that is all you can do.