April 30, 2015

By Angel Lock

6/21/2016 at 10:40 AM

Well, its that time again. 13 days away from Chase’s MRI and there is no sleep in sight for this momma. I am usually not able to fall asleep until 10:30 and like an unwelcome alarm, by body wakes at 2 am and I am unable to fall back asleep. Usually I sit and lay motionless in bed listening to the kids every breath and every movement they make in bed. After several nights of this I decided to use my ninja skills to slither out of bed, careful not to wake anyone. Sometimes after laying in bed for hours unable to sleep I feel like I am going a bit bonkers. So today I decided to go ahead and write.

There has been a lot going on. First, my beautiful Emma has become increasingly protective of Chase as of late. It started when the kids were playing with a few other kids. One of the younger boys hit Chase and this sent Emma into a fury. She ran up to me and told me about the situation. I noticed the boys grandparents going over to talk to the boy about it. I tried to hang back a bit and let him resolve the issue while I checked on Chase. Of course Chase was standing motionless in the grass. When I asked him if he was okay he said nothing and then quietly nodded his head yes…with tears in his eyes. After a moment I notice Emma was crying with the boys grandfather so I went to check on her. Apparently the moment upset her even more than I initially knew. She said that the boy could NOT hit her brother because he has cancer….which quickly swirled into her sharing that he was in the hospital for months and she did not get to see him and she would cry at night for me. My heart broke as I held her. It seems like things are getting better…until they are not, and then things spiral quickly. When I tried to talk to her about it she shut down and simply cried…which in turn made me emotional. My poor sweet baby.. A few days later the kids were at a little show and one of the characters was trying to get Chase involved so he playfully took Chase’s hat. For those of you who know Chase, his hat is his comfort to cover his hair especially when new people are around. Again, Chase stood motionless and Emma lost her cool. She screeched, give my brother back his hat!” and in turn tried to take the characters hat. Oh my, then we had to talk to Emma about making sure that she allows us to defend Chase and told her that the character simply did not know that the hat was an issue for Chase. We told her that the character was an adult and she must be kind and respectful. Tonight while Chase was in the shower and Emma was in the bath I walked into a conversation between the two. Chase was telling Emma that someone had called him “bald”, Emma quickly snapped back…..”show me who it was tomorrow Chase”. I had to put the breaks on the conversation and remind them that many of the kids Chase’s age are not trying to be malicious they are just stating things as they see him but they are not intentionally trying to hurt Chase. I don’t know how to tell Emma she does not need to shoulder the pressure of always trying to protect him. Marc and I are here to protect them both. Yet, it seems like maybe this is part of the process that we have to work through together.

Chase has been making many physical strides. His stamina is exponentially better than when he started the school year. In the beginning of the year he was only going half of the day and was completely wiped out. Slowly we increased his time at school and he was thriving. The next hurdle to conquer was encouraging him to play with the other kids. To this day he will not go out and play at recess because he is afraid he wont hear the whistle (high pitch frequency). So he eats lunch and then goes into his classroom while the other kids play. I really wanted to encourage him to venture out because part of school is the social aspect. For many months at the end of the school day, several of the kids would go out and play on the playground and I would encourage Chase to play. He would be upset and just wanted to go home. So I told him we could just watch the children play. Chase reluctantly sat on my lap and we would simply watch. Then after a few months he told me that he would only play with me. So I would run around like a 6 year old playing hide and go seek with him. Now he is staying after school EVERY day to play with the other kids!!!!! This is such a huge feat for Chase. He has learned to trust a group of kids and for the first time EVER has a group of boy friends. It is amazing to watch them play because Chase is playing like a boy, not afraid of being hurt. The other day I looked at my watch and we had been playing after school for over an hour and a half! I know as the summer comes and the heat sets in his energy level will be hit hard, but we are playing as much as possible while we can.

As we make headway in some areas we fall behind in others. About 2 1/2 weeks ago one of Chase’s hearing aids broke and I was waiting on the pieces I need to fix them. Because I did not want to confuse him by just wearing one hearing aid I let him go without them until they were both able to be worn. I finally go the pieces I needed to fix his hearing aids and now we are having a battle about wearing them. He glares at me and says, “I can hear just fine without them and I don’t want to wear them”. It is hard sometimes to find the words to encourage him instead of him feeling like wearing them is a punishment. He is getting older and is definitely finding more of his own voice. If we have a doctors appointment he verbalizes his unwillingness to go, where as before he simply just went. He complains and says, “why am I the only one that has to do medical stuff?’. While in many ways he wants it all to simply go away, it is still constantly on his mind. His teacher does a weekly “Kindergarten News” letter, where she interviews the kids about what is going on that week. Many kids will talk about a birthday party that is coming up, or a playdate at a friends house. Chase’s comments this week were, “I will have to go to Phoenix soon for my MRI”. I literally have not mentioned the MRI, I never tell him about his MRI until the day we are leaving because I don’t want him to fret about it. Despite me trying to protect him, he realizes it is about time again and it obviously weighs on his mind.

I realize that this is all part of the journey. Honestly, how can I complain… we are all together. Chase is with us and we are blessed to have the opportunity to work through these issues. Yet sometimes it causes me to lay awake at night, wondering if I handled things right, wondering how I could have handled them better.

I thank you all for your continued support and love. God has blessed me with you all.

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