You ask me what do I crave the most from Lily and I will tell you it is her voice. Words. Humor. Stories. Her take on situations. Her story, her day coming from her lips.
I have always said and will continue to say that CDKL5 robbed the most important part of human interaction from her and I will always carry bitterness towards a stupid tiny deletion that took away the thing that makes us who we are.
When you describe a friend of yours where do you get your impression of them? Their style, maybe a little, their looks, yea, but how do you know the kind of person they are? It's their voice. It is the words they say, how loud or quiet they are. The things they say about others. The big grand stories they like to tell, or the stories they never can quite tell right. Their words may tell if they are funny, or smart, clever or tough. The words we speak are how people either relate to each other, or frankly don't like each other.
Words fill this world. And if you can't hear them then there is a language you can speak with your hands. Options aren't taken away when you don't have a voice, but you do have your hands.
But when you don't have your voice, or your hands, you are kind of stuck. You are dependent upon others for everything. And not just that, you never get understood. Not the way the rest of us are. Lily is sweet. She is sweet because she is quiet and likes to cuddle. But what if there is so much more that we never get to know. I imagine she is hilarious, just like her brother and sister. Why wouldn't she be? Humor is the fuel in our family, why wouldn't she be able to tell a joke? I bet Andi can bug her as much as Oli bugs Andi but she can't say so. What if she wants to say stop it to her siblings and can't. She just has to deal with them running around her being crazy.
I think there got a point where I stopped hoping we'd hear words from her. I stopped letting myself believe I'd hear her say "I love you mama" because when the day doesn't come it just hurts more. We've gone through the heart break with thinking we found the answer for seizure control and every time it never works we are broken. And to hope for words and to never get them is even more damaging to us than seizure control I think. Because words would change everything.
So yesterday we had an appointment with a communication eval team. I was in knots over this. I knew this could change everything, or it could keep everything exactly the same. I was cautious to pray for a miracle because I didn't want to be angry, even for a moment, with God if that was not a miracle we would be given. But I asked others to pray big for us. And I did pray big too. I cautiously prayed big for something to help Lily communicate with us and prayed to be gentle with me and my mama heart. But God came through big time on this prayer requested lifted up by some amazing people in our lives.
Appointment was at 4pm. A hit or miss time with her. But they came and she was wide awake. They put in front of her a computer screen called an eye gaze and she immediately looked right at the screen. The positioning was tough to get at first, Lily also has a visual impairment called CVI caused by the brain, not her eyes AND Lily got an awesome astigmatism just like her mama so seeing well, Lily does not. She had her glasses on and was right up in front of the screen, we moved it right to a perfect position for her and they put a cause and effect game up for her and she started popping balloons with her eyes. It was funny because it made her get all excited and wiggly. Then we started with the two choices and brought out juice. Well back up she asked for water, but I don't think she knew what the picture was exactly but she looked and it said water so I gave her water and she cried. (Lily, spoiled Lily, doesn't like water) so then we got it to a place where she could ask for juice or a to eat. She asked for juice, got her juice and was happy. Then we moved where the juice button was on the screen to make sure she wasn't just looking in that direction and she chose the juice again. Then we added eat and offered her pudding and there she went for probably 15 minutes with her choosing between eat and drink and it was so intentional. She would say eat. Take a bite. Say eat. Take a bite. Then ask for a drink. Just like any of us would do while eating. She did this til the pudding was gone. She asked again to eat and I said Lily it is all gone and she cried! Yes sad, but amazing! She was so on task the entire appointment They were with us for 1.5 hours and Lily was awake, interactive and the biggest thing is she never had a seizure so she was awesome with this team. They were so wonderful too! They all had tears in their eyes and said this is why I do this job. I asked God for people with patience and patient they were. They said no need to test anything else out, she is a perfect candidate for the eye gaze system.
Now next we have to see two other systems and decide which one will be the best for her, but we will be getting her this amazing technology, in our home! And mounted to her chair! I feel a door has been open that I thought was bolted up. I feel like we will get to hear what she has to say now.
I may not be like in my dreams at night, but it is even better because it is going to be real!
We are praising God for these amazing gifts we are given and pray every non verbal child gets a chance to communicate with their family just like Lily is getting the opportunity to.
I am wordless on how I feel, yes I just wrote a lot of words, but how I feel about the actual chance to hear what Lily has to say .... absolutely wordless.
Keep us in your prayers as we continue this journey and I promise to keep everyone updated!
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