First, I've been wanting to share some good things about Harlie. She is still on home bound for her schooling. I wish I could give her more. I would pay good money if I could hire an additional teacher to come to our house and spend an hour a day with her. Her vocabulary is exploding and every day it seems that I can understand more and more of what she is saying. Yes, speaking!
Here are a few examples:
1. One day a few weeks ago, she brought me a toy and said, "Fix, please." So, I took it and in my efforts to jam it back together I hit my hand on the hard plastic. I said, "Ouch!" and she looked at me and SAID, "Wha happen?" (she can't enunciate a lot of sounds). The amazing thing is that she asked me a question (rare event) and that she knew the word "happened." Holy cow. She's hearing words not being directly taught to her and she's learning what they mean, and how to use them. YAY!!! I was so shocked that I started laughing and crying at the same time and I completely forgot to answer her question!!! ACK! Huge moment, anyway and one I will re-live over and over. It's the little things in life. The little things that mean nothing to most and mean everything to few.
2. I hate that I have to preface this next one with this.. but such is life. Sometimes the dog has an accident in the house. As they say, shit happens. In this case, it wasn't the dog's fault (if Tom reads this he is thinking it never is) because a certain someone (not me) gave him a bone for his second birthday (Feb. 5th, just in case you want to mark your calendars) and it didn't agree with him. Anyway... so Tom got home from work and Harlie was upstairs. She heard him come in the house (love that fact as well) and she went to the top of the stairs and yelled (another cool fact), "Daddy, Rooney pooped in my room!"
I get that you might not understand why that's such a big deal. But, that is a full sentence, my friends. A full sentence, with SIX words, that wasn't prompted - AT ALL. And, she said in and my, words that she often skips because they just aren't that important, so probably not worth the effort. Huge. Really, really huge.
3. We have a nursing supervisor that comes out to our house every month to go over Harlie's case (since they provide her home health nurses). Well, we got a new supervisor and it was her first visit with us. She was sitting at our kitchen table while I went into my office to get Harlie's chart. During that time, Harlie walked into the kitchen. I guess she wanted to see who was sitting there. Anyway, I heard the supervisor say, "Hi Harlie!" she introduced herself and then asked her how she was and Harlie said, "Good." Then she asked, "Are your nurses taking good care of you, Harlie?" And Harlie said, "Yea." Then she said, "You like them?" And Harlie said, "Yea" and then showed her her toenails since they were painted. And then I walked back in the room. In shock. She just had a "conversation" with someone else, with no help from me and she understood Harlie. Granted, not a ton of words were spoken. But, Harlie responded to her questions in an appropriate amount of time, without having to be asked more than once! This is amazing progress!
4. One day she told me that the step stool was dirty. I didn't know she knew the words step stool.
5. The other night I said, "Let's go brush your teeth." And she said, "I already did it." She said the word already. Another word I had no idea she knew. Amazing!!! That girl never forgets to brush her teeth (nor puts up a fight about it). She's the best. She also asked me, "Where's the soap?" I had never heard her say soap before.
6. The other day she signed and spoke (at the same time, which I've wanted her to do forever) "It stop raining." What's particularly amazing about that is that she is starting to share her observations (like telling me the step stool was dirty, or that the dog is dirty, etc.). That's a huge development from the basic I want, I need language. And she's starting to do it a lot more often now with books, movies and TV shows. Huge.
7. Of course, this doesn't mean we can always understand her. There are more times than not when we simply don't know what she's saying. It's still heartbreaking every time. Especially when I know she's trying to tell me something specific. Ugh! This was one of those times... the other night I was putting her to bed. After I got her pulse ox on and her trach collar with the humidifier on and all tucked in, she said ... "I want _______." So I asked her to repeat it. Which she did. And it sounded the exact same. But, I couldn't understand. This went back and forth a few times. I grabbed her communication device and asked her to use that. She sat up and went to the "beverages" screen. She scanned the page, didn't find what she was looking for, backed out and tried the "kitchen" screen. She scanned that one and again, didn't find what she was looking for. So she put it down and looked at me. Then said the word again.
So, now I know it has something to do with her drinking it, but I know it's not water or juice or milk. Which is strange because there's nothing else to choose from. So, I said, "Can you show me?" And she got out of bed, walked over to her trash can, looked in it and pulled out an empty medicine bottle. She held it up, looked at me, then said, "medicine." That is what she was saying!
A few nights prior to this, Tom told me that Harlie took her Enalapril by mouth. Which is weird, but good. So, he had been giving it to her at night for a few nights. He wasn't home that night. The funniest thing is that the bottle was in her trash at all. It's one that you have to keep in the refrigerator. The prior night, it only had one more dose left. So, instead of measuring it out in a syringe and carrying up just the syringe, Tom just took the whole bottle and poured it upstairs. Then, threw the bottle in her trash. She remembered that he threw it away.
Honestly, I find so many amazing things about this whole interaction. She is so incredibly patient with us when we don't understand her. She never gets frustrated with us. She seems to sympathize with us that we don't know what she's saying - but that we are trying so hard! And she was teaching me by holding the bottle and saying "medicine" again. Now I know what medicine sounds like.
We have a long way to go with her speech, but talk about progress! And this is with her not being in school since before Thanksgiving! It's possible she's exposed to more language here. She's not working so hard to have to listen. There are less distractions. And she's not wearing herself out physically just to be at school. I'm so comforted by all of this. Making the decision to put her on home bound was NOT an easy one. And despite her progress, it still doesn't sit well with me. If I could wave a magic wand... I would want her healthy enough to be at school like kids her age should be. I wish that doing what is best for our children always felt good. But, it doesn't. Too bad more parents don't realize that. Sometimes doing what's best for them, hurts us. God knows I've learned that many times over.
Anyway, we have to hold on to what's good, because not everything is. I still have her cardiac situation weighing heavy on my mind (her doc appointment is Thursday!) and we have moments that are difficult. A few weekends ago was the Girl Scout Father/Daughter dance. I really didn't put much thought into it, because I wasn't sure if I would send her. I didn't even tell her about it, just in case we decided not. But, in the end, I was curious to see if her recent progress would bleed into this dance. It didn't.
But, I asked her if she remembered the Father/Daughter dance from last year and she said, "yea" and I asked if she wanted to go again. She said, "yea." So I grabbed the same dress and shoes she wore last year (yes, they both still fit) and off they went.
This is the third year Harlie and Tom have gone. It has been difficult for Tom each year. Harlie doesn't behave like girls her age. She doesn't care about the same things. In fact, she doesn't appear to really care about anything there. The music is too loud for her. And I think the high pitch of the girls' squealing and screaming doesn't help. There's a lot of movement (which I think she tries to avoid being around for fear of being knocked over). And she isn't excited to see her friends or their dresses, etc. like other girls are with each other. I guess she's just not there yet. But, it can be sad for him to see her compared to them in that moment. As he said when he got home, he sees what she would be like, if things were different. Don't get me wrong, we love her for who she is - and she is a lot of person in that little body! But what we wouldn't give to have her be a healthy little girl running around excited to see her friends and dance to One Direction or Taylor Swift.
He also said that the other dads were talking about how they took their daughters out to dinner first, before the dance. As much as you can substitute and try to make up for, some things just hurt. It's that simple. Some things just hurt. And it will always be this way. You just have to learn to live with the pain. And try to remember the things that are good and that bring you joy. And after that night, I told him to remember all that she is communicating. All the things she can do. She is an amazing, wonderful little girl. I mean, look at this sweet, happy face...
I hope Tom doesn't mind me sharing this... but when he got home, Brandy and I were anxious to see how it went. We were so hopeful that it was better than last year. But, Tom said that every year he cries when he's there. I teared up instantly when he said that. And later, Brandy said she had to go into the other room, because she was crying, too.
There are so many difficult things about being a parent of a child with special needs. Living with the grief of what is lost never gets easier. It never goes away. And it's coupled with the guilt that in some ways we have it better than other parents who are living with different losses. Children who can't do as much, or children that have passed away (God love those moms and dads).
I know that I will never be able to make those feelings go away. Not for us, and not for our special friends. So I have to focus on what is good and be thankful. I will not take our blessings for granted.
And after it's all said and done, we've lived another day. Happy.
Whew! This turned out to be a longer post than I originally intended. And I have more to tell you. But, it will have to wait.