I checked Addie in and by the time I turned around she had Houdini’d out of the stroller and was already on task. Let the art begin. She started to do the sign for “more.” Addie is all words and doesn’t need to sign anymore. She is verbal beyond verbal. But when she is excited, nervous, etc., I will see her over-do the sign for “more.” This time, she was totally doing this.
She was very happy with this situation. She began her first arrangement. I sat and watched. Literally I sat back and watched. I didn’t stop her. We were in the waiting room at the Behavioral Doctor at the Children’s Hospital of Philadelphia (CHOP). There weren’t many people there in the waiting room. Addie wasn’t running from me. She wasn’t screaming. She was focused and moving chairs. And I simply let her.
Many people would have a problem with this. As a matter of fact, I took a picture of her work of art and someone that I texted it to actually did have a problem with it. I’m sure a lot of folks have a lot of thoughts about what I do and don’t do. When I received the doubting text back that read, “Are you sure you want her to do that?” I put my phone away and wasn’t mad at the person. I was mad at myself for sharing.
Addie was working on masterpiece #3 when a doctor called another family back. The mom gathered her two children, and Addie thought she was now a part of this group so she followed. I quickly reminded her that she was a part of my group, and as I went to get her, the little boy came up to me and shook my hand and hugged me and started getting very emotional and talking very fast. The mom became very embarrassed and started to apologize. I was so confused — not because of what the boy was doing but what the mom was doing. Why was she apologizing to me? We are at the behavioral doctor’s office. Was she so conditioned to apologize that she forgot? I looked at her bewildered, then softly said, “Hey… stop… we’re in this together… We’re strangers but teammates. It’s all OK. Really. He is totally OK. I am totally OK. Really.” She was still upset, and took him back.
I went back to “Stonehenge: The Purple Chair Edition” to find Addie now crawling through it but only touching the purple parts. I thought, “How clever.” If there is one thing my child is, and she is many things – she is clever. She is a problem solver. She can get what she needs and wants. I am very impressed. When her name is called, her doctor actually comes out to get her. He knows her well. He comes out to find her design. He smiles at her and looks at it and says, “Wow! Quite a project! She is very smart.” We all agree. All three of us clean it up, and the appointment begins.
After the appointment I am frantically chasing my little one all over as she is suddenly on the Tour de France. She is fast. Once I catch her and my breath, I run literally right into the mom I encountered at the very beginning of this appointment. I apologize and pray I didn’t break her nose or any body part. She and I are intact. (Thank you, again, God.) Ironically her son is running away from her, and she lets him. We laugh at this, and then she says to me, “I am so glad I saw you again, I just want you to know that my son is very smart. He is high-functioning. He may even go into a normal classroom and then into kindergarten. He may come out of this. He is really doing so great. He is really smart.”
I couldn’t believe it. All I could do was what I knew best and that was to hug this woman, so I did. I said nothing because I really was speechless. She looked so tired and actually more upset than she did before the appointment. There was so much I wanted to say to her but I couldn’t, so we went our separate ways. We got onto two separate elevators — separate elevators with two bright, smart, adorable children both with bright futures ahead of them. We were both exiting the elevators as mommies who want nothing but the best for our kids… Yet, we both doubt ourselves… we doubt our value in different ways. Neither one of us is right. Neither one of us is wrong. Neither of us has the answers. Neither one of us knows if what we’re doing is right. One of us is frantically running after their child and one of us is watching as their child runs away.
On the car ride home, I think. I press the “Chapter One” button over and over so Addie can hear and watch her favorite part repeatedly on her favorite DVD. Each time I press that button, I press a button in myself that asks the question – “What am I doubting? Why am I letting people doubt me?” I find myself driving and talking to God while I drive. I am asking Him this question.
I get a lot of feedback from people. And by people I mean everyone: friends, family, coworkers and sometimes people I don’t even know. People mean so well — they really do. I have found that people struggle most with my level of acceptance of Addie’s diagnoses. The more comfortable I am with it, talking about it, living it — I have actually found that I have become more isolated. The better she has done, the farther she comes, the more some people struggle with it as well. It’s an odd situation.
Sometimes the feedback is through silence. People I care the most about just stop contacting me. Sometimes people can only text or email me. Sometimes people just fade away. Other times, people constantly challenge and question me… like today with “Stonehenge.” Again, that person meant so well, but I find myself saying:
“What do I do? Am I doing something wrong? Am I wrong for just accepting things as they are today and living in the now?”And by this I don’t mean being impulsive. By “right now” I mean right now. I am working our tushies off in therapy after therapy after therapy. Right now we are going to doctor after doctor to insure she gets everything she needs to succeed. Right now I am making sure she gets all her weekly medications filled and weekly therapies organized on the calendar. Right now we are two months away from meeting her service dog we’ve worked so hard to make a realization. I mean, I really can’t think ahead. I really can’t think behind as far as this situation is concerned. I just want work really hard on the now and at times that means sitting back and watching purple chairs being constructed into Stonehenge. Is Stonehenge that bad?! I mean God… can you help me here? Help me.”
With that, my cell phone goes off: Ding! Since I am driving I can’t look at it. But the noise — Ding! — tells me that I have a message on my Facebook page. When we get home and I am in the driveway I look at my cell phone and would you believe there is a message from my childhood friend and neighbor? She was the one who emailed me while I was driving. It read, “Hey Sam, I was in the area today where we grew up, and I drove past your childhood home – you wouldn’t believe how much it’s changed! I took a picture of it with my cell phone. You’ll barely recognize it except for one thing – the big white rock that you guys always had out front is still there! It never moved! It stayed strong! Love ya!”
Oh. My. Well hello, God. I do believe you were sending me a sign. And I do believe I heard you, sir. As a child we had this huge – I mean huge – rock at the end of our driveway. We painted it white, and we could sit on it. My parents hand-painted our last name on it and our house number. It was so big it wasn’t movable. It’s still there.
So maybe that is the point. I am to stay strong. I am to be myself. As Aslan said in “The Lion, The Witch and The Wardrobe,” “You doubt your value; don’t run from who you are.” Some things may change – time, age, houses, places, but our values, what we believe in and who we are, we must remain true to — this includes purple chairs in waiting rooms that very beautifully, to this Mommy, resemble art.
This post originally appeared on Addie’s 4Ever Friend.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.