One Year Ago.
Part 2. Exactly one year to the day.
Do you ever have those moments where your whole heart breaks in two for your child? It’s happened a lot, but this past weekend I realized I needed to up my parenting game on the spot. It wasn’t just any teachable moment, it was a defining moment, a remember forever kind of moment.
Reagan was sent to timeout in her room for pulling and hitting a coworker who was over at our house, she goes to her room crying those hot tears, with her hand over her mouth and screaming because she knows she’s not supposed to do that. And when she realizes those things, this is often the scene.
I️ followed Reagan into her room, which I normally wouldn’t do. I’d allow timeout to happen for a few minutes and then talk to her, but this seemed different. I don’t know why, it just did. Through our conversation I️ asked her a series of questions like, do you know you’re not supposed to do that? (yeah! *tears rolling down her face*) Are we supposed to hit and pull our friends? (NO! *hand over her mouth and head buried in my shoulder*) Would you like it if someone did that to you? (NO! *bottom lip out as far as can be*)
I don’t know how the conversation got where it went next, but Rob and I have talked with her before about this, and she knows and we know that it’s hard for her to control her emotions and her movements due to *insert all the things* here. I remembered that she had used the word different a few times on her talker recently. So I asked her if she liked herself. And her head just fell and her lip was out and she looked me in the eyes and said no and buried her head in my shoulder. She didn’t like herself. She didn’t love herself.
Reagan, do you feel like you’re different? *sniff, sniff, big belly scream* “Yeaaaaahhhhhh!”
My heart broke into a million pieces. First of all she’s telling me this really hard thing to communicate for any 4 1/2 year old. And, I’m so glad she can communicate her feelings, but I hate that this is the feeling she’s having. She answers that things are hard for her. It’s hard for her to communicate and she’s frustrated that it’s hard for people to understand what she’s saying.
She knows sign, but she learns faster than us. There have been a few times when she’s signed and we don’t know what she’s signing.
Most recently it went like this:
Rob: “Are you signing something?”
Rob: Does Daddy know the sign?
And we proceed to guess what she’s signing until we get it. That time, she wanted a princess story from Daddy. She had just learned the sign for princess one day earlier and it hadn’t registered with us yet.
So in this moment I’m trying to figure out what to say to her impressionable heart and mind as I’m fighting back tears. I tell her “God made you perfect and you don’t need to be like everyone else. Being different is OK, even though it might be tough sometimes.” She wasn’t really loving that idea…so I tried again.
I told her about when she was sick, but in more details. She’s been telling me that she wants to be a Dr., specifically a baby Dr. when she grows up. So I told her some of the Dr.’s that saw her in the hospital were wrong about what she would be able to do. I told her the Dr’s told Mommy and Daddy she would never walk or talk or eat. And they were wrong.
Then I️ explained to her what a miracle is, who is responsible for miracles and that she IS a miracle. Miracles are different AND awesome. She knows God made her and that God loves her. She signs that God and Jesus live in her heart. She’s receptive to all of that. At the end I ask, is it OK to be different? She had mixed feelings about it still, but the wheels were turning about being different and being cool and how they can coexist.
Being different was the theme of the week. We drove to see Christmas lights and pointed out that they were all different, and that they were still beautiful. “Reagan, don’t you see how being different is awesome!?” She was 50/50, not quite convinced.
Having a child who is almost five that has difficulty expressing all of her thoughts, imaginations and dreams is really hard. The other day she used her talker to say “I am mad” and “I am sad.” And she cried as I asked questions that related to the signs she was giving me and what I thought she was saying and all the surrounding events.
Sometimes she wants to say something funny, most recently it was “I like Elf and toilet.” She then smiles with her fingers in her mouth as she laughs and waits for me to get it. Although it took me a little while to figure out, I learned she was referring to a scene in Elf that she finds so funny and wanted to tell me.
We so badly want her to talk and to communicate with her in any way possible. We are looking to take sign language in 2018 as well as sign her up for more intensive speech therapy. It truly is a blessing to be able to talk with your children and we hope and pray for that continuously. If you think of it, please pray for that as well.
December 19th, 2017 at 5:11 pm
I am praying that your communication with Reagan grows. I had a similar conversation with my 4 year old where I just could not get what he was saying and the frustration on my part and his because of some of his speech difficulties was so overwhelming for him. She is a miracle and so are your words the Lord pours out through you.
December 19th, 2017 at 7:15 pm
Thank you for sharing this! She is so beautiful!
December 19th, 2017 at 10:35 pm
You tell that beautiful girl to not be afraid of being different, be afraid of being the same as everyone else. I love you AM!
February 10th, 2018 at 4:46 pm
My name is Karen Bernard and Karen Clay Katulka is my cousin – She’s my namesake! I’ve followed Reagan’s story from the beginning. My daughter is perfectly healthy but deaf. Claire learned her sign in speech therapy and her therapist would give me a list of new signs that she learned each day. That was the only way we could keep up. The sign language book stayed open on the counter 24/7. Make sure you use the same book – signs differ. Sign language was HUGE for us – relieved a ton of stress. I pray for continued healing and miracles for Reagan and peace for her parents.