There are days that I feel like I have accepted Emily’s Speech Apraxia. I am not happy about it but I understand this her path and I am doing what I can to help her. Then there are days like today when I hate it. I start to question everything I am doing and have done. I am angry that she has to go through this. And I am angry that I also have too. I hate watching her struggle. And I hate not being able to understand her and her needs.

I woke up at 2:45 today. I heard Doug get up to get ready to leave for his very early flight. As I rolled over, I noticed that the hall bathroom light was on…that could only mean one thing…Emily is up. I get out of bed and see the bathroom light on, her pjs on the floor by the laundry chute and light shining from under her closed door. My first thought…shit not again this could be bad. This is not the first time. Sometimes I catch her right away and it’s easy to get her to go back to bed. Other times, she’s been up for awhile and she is ready to start the day. Today I did not catch her early enough.

I took a deep breath and opened her door. She was playing a CD from her radio and the number was in the double digits…not a good sign. She had every lego out plus all the small pieces sorted by which lego creation they belong to. (A great skill but not at 2:45 in the morning.) She was dressed and ready. All of these were very bad signs that she had been up for quite awhile.

I asked her why she was up. She shrugged her shoulders. I asked her if her light was green (she has a clock that turns green when it’s ok to get up…it was not green) she didn’t answer me. I asked her again why she was up. She then patted her belly and said “eat…hurt”. But was she really hungry or was her stomach hurting her? You see she often says “no” when asked questions about whether or not she is sick even if she is. As a baby and toddler, I never knew she had an ear infection. She never cried or fussed or pulled on her ears. It would only be when she would wake up with her eyes filled with goop that I would know. I would take her to the doctor to find out she had a massive ear infection. So even though I knew I couldn’t trust the answer, I asked anyway. 

“Em does your stomach hurt?” 

“Yes” 

“Do you think you are going to throw up?” 

“No” 

“Are you sure?”

“No”

Sigh…exactly how I thought it would go…then I got pissed which lead to me muttering under my breath…another sigh…

Feeling defeated, I clean up all the legos; help her get her pj’s back on even though she didn’t want to; and took her to my room. As we walked in, she makes her I am about to barf noise (she has a noise she makes and there is usually no time in-between the noise and the action). I ask her again if she is going to throw up. She once again says no. So I unwillingly put her in my bed which JD is already in from his middle of the night I need to pee incident. I go to the linen closet and put a bunch of towels on the floor next to her just in case. I lay back down on my side and listen for the noise just in case I need my ninja moves to keep her from throwing up on my down comforter or JD. As I laid there, my mind swarmed with thoughts and guilt. Why do we have to go through this? She has had so much therapy, why does she still struggle so much? We have gone to different therapist. We have met with the experts. Still she struggles. Have I done enough? Maybe I need to force her to practice more. Why do I always have to try to read her mind? Why do I have to watch everything she does so closely so I can try to piece together what might be bothering her? Why can’t she tell me where she hurts? Why can’t she tell me she had a bad dream? Why can’t she tell me she excited about something? Why can’t she tell me her feelings are hurt or she is sad? Why can’t she tell me about her day? Why can’t she tell me about her friends? Is she really trying or has she given up? Is she ok with not being understood? Is she ok being treated like she’s a baby or doesn’t know anything because of her speech? These are the thoughts that keep me up the rest of the morning.

I can’t believe that she is ok with any of that. But honestly I don’t know. She can’t tell me. She can answer yes and no questions but often she just gives an answer hoping you won’t keep asking her questions that she can’t answer…well that as least what I think because once again, she can’t tell me. She sometimes answers in a clearer one or two answer but not always.

I know there are so many worse things out there than Emily’s Speech Apraxia but that doesn’t mean that it isn’t hard…very very hard. It completely sucks. I truly have no idea what she knows…how high she can count…does she know the alphabet….how many words can she read…what are her math skills…what scares her…what makes her happy…who is her best friend…why she doesn’t like certain foods…the list goes on. She loves to sing and act along with movies but due to her Speech Apraxia she can’t be in chorus or join in a musical or play. I think that is sometimes what hurts the most.

For the most part, I stay positive and try not to focus on all the “cannot’s” but today is a can’t day. It could be due to the lack of sleep since I have been up since 2:45. Or it could be because every so often it makes me really really sad. These can’t days are fewer than before but I still have them. Emily does so many amazing things; things that I never thought she would do. But this speech thing is hard. And it does hold her back with some things. I believe she could do even more if she had a speech delay and not Speech Apraxia. Did you catch that? I am not even asking for no speech issues just not Speech Apraxia. I am sure there are parents and therapist in the Speech Apraxia community that will be upset with what I just wrote. But I hope that understand that these are my feelings. I’m having a hard day. Emily has improved tremendously but on days like this, it’s hard to see it getting better. She’s 11 and heading to Middle School next year….that terrifies me. This is not going away any time soon, if ever, but we will continue to move forward hoping that each day gets a little better.