Struggling

Jack is still struggling a lot at this time. Everything is heightened at this time for him. Some people don't really get what that means. Basically Jack has struggles everyday. He has some kind of issue or obstacle he has to over come. At this time he is having a multitude at once and every issue is heightened. This happens with his disease. The specialist in Cleveland tells me this is called a downturn. This is not Jacks first. His last downturn lasted about six months.

Jack is having heightened leg pain, tetany, fatigue, falling, choking, speech variations,eye issue, heightened tremors, a period of not walking at all, high glucose levels, and some other daily issues at this time. Please keep him in your prayers. He manages well but it can be very frustrating for him. His body will be cooperating in an area and then the next day it will not. I can only explain it as being able to tie your shoe today and your hands being so shaky and weak you can't tomorrow. That is an example as a adult that I could think of. Jack obviously cant tie his shoes. For Jack it is more like being able to brush his teeth himself today and cant hold the toothbrush tomorrow. In a day it is a bunch of things he could do yesterday but maybe cant today. Try to understand that at four. It can be very frustrating for him. He does well for the most part.

I think sometimes as his parent it is harder for me then him. I mean as far as feeling bad for him. I try not to let myself think like that. He doesn't that much, so why should I. That is what I tell myself anyway. It just breaks my heart sometimes to have to watch him struggle.

He had an orthatist appointment the other day. He was suppose to be getting new braces for his legs. He hates braces. His PT at school was recommending trying them again. Long term with out them he could have issues down the road. He has major inversion in the ankles, as well as some other issues. Since he was two his PT then was concerned. So Jack has worn braces here and there. All his different physical therapists have mentioned bracing to try to prevent if possible, long term problems with the ankles, knees, and back. His first PT was right about the hip. His left hip still doesn't sit correctly in the socket and that is monitored every six months. He hasn't had much luck with the braces in the past. It has ranged from them being made incorrectly to him just not tolerating them. We will see this time. We didn't end up bringing them home. After a very long fitting they decided what they had made wasn't working for him. He was so shaky and his body tremored so bad when he had them on that he was falling badly. They are making corrections and we have to go back.

It was so sad for me at this appointment. Jack in the last few months is starting to be more frustrated with things. He is starting to understand more that he is different then the other children. We are trying to talk to him more about what his body can and cant do. We are trying to get him to understand and learn how to listen to his body. I have used the disease word for the first time with him. I don't think he totally gets much being he is only four. I definitely know he is grasping some of it. At the appointment when the man was putting the braces on his legs he was a great. He is always very good for doctors and in situations like that. He is very use to it. He has been being poked and prodded at since birth it seems. The second time after making some adjustments the man came back and put the braces back on. This time Jack asked about if he had to wear these braces home. His PT mainly and I a little told him yes. We tried to explain how they were going to help him and how he needed them. Jack didn't really say anything. He began to have tears in his eyes. As a big boy now he turned his head and began to rub his eyes. Trying to make it not as noticeable that he was starting to cry. As I saw one tear roll down his face my heart began to break. As it has so many times for him. This was so hard for me. I was holding back my tears. Many times I have felt bad and have held back my tears. I have wanted to cry so many times due to pain he is having to go through or just feeling bad for his situation. This was the hardest because it was the first time I saw Jack break in such a way. He is starting to get it all. In his own four year old way. He was being the typical man and trying to hide his tears. You could tell the thought of those braces and having to wear them hurt his heart. Why I wondered? Was it the fact that he remembered they could be uncomfortable? Was it that he new yet again he had to wear them at school and he would be different? Was it the fact that he had to wear them and be different in general? Whatever he was thinking it was so hard to see him so sad. He was so sad to the point of silence and tears running down his face. He quickly started playing with the toys in the room and got over it. That is my Jack. Feel the pain or the sadness for a moment and be done. I pray he can always be like that.

At first when he saw the braces he was actually a bit excited. He had picked Red straps with flames. Red is his favorite color and flames are for motorcycles , so that was cool. Yet later in the appointment when he realized and new he had to wear the braces; and we explained things and he processed it, the silence and tears came. It was so heart wrenching as his parent.

I am the one who gets angry and says why. I want to take it all away. I want it to be me instead of him that has to go through all this. I wounder about school and the kids picking on him. It starts so young these days. Kids are cruel and no matter how smart Jack is, he is different. Sometimes I think that is going to be even harder for him. He is totally normal cognitively. He is a smart little boy. He notices he is different. That's when the frustration comes out. He is starting to notice he could do this yesterday or hours ago but cant now. Why I want to scream sometimes. People look at him and see him and say he looks fine. Live with him I want to say. See him in the evening or in the middle of the night. Be with him for six months during a downturn. Be there when your child cant walk at all. Be there when he is chocking and then stops eating for fear it will happen again. Experience the pain in your child's eyes and there is nothing you can do. Try to explain to a frustrated child why you have to keep disrupting his play to stick him with a needle to check his sugar levels. Explain to him why you have to disrupt his day to take one or more of his 12 medications again in the day. Explain to him why he cant keep playing or do what the other kids can. Explain to him why he cant hold the crayon or why his whole body is tremoring. Experience feeling like you are the bad guy who has to disrupt his play. Tell him he cant do what the other kids are doing. Then get to be the mom who tells the other kids can we not do that right now when Jack is here. He cant do that. Try to explain to his older brother and close friends about Jack and his issues. Sometimes I just hate it. Sometimes I want to scream. I want to say why. I want to get angry. I want to say to all the people that talk crap, walk a day in mine or my sons shoes. I feel that way especially lately. Then I have to stop and realize some things. God didn't do this to Jack but he allowed it. Jack is going to be used by him. Jack is my inspiration. Jack touches so many souls. How can I feel sorry for Jack when Jack doesn't allow it for more then a minute or two. How can I get angry or frustrated when Jack doesn't allow himself to be that way for long.

I have to change my attitude and look at the whole picture. I have to realize God is in control of Jacks life. He is the author and finisher of all of are stories. Jack has taught me so much and does every day. I thank God for my son. Yes, I would love to take the disease away. I would love to have there be a cure. The fact is that there is not a cure or prognosis. I don't know how long Jack will live, when and if his internal organs will be effected, what else will happen, how many surgeries, test, ect.. that my son will have to go through. I know one thing though, my son is strong and God new that. God new he could allow this in Jack. Jack will be a living testimony of him. If Jack can be like this at four, imagine what he could do as an adult.

I realize that is true for all of us. Whatever are trials are. Whatever cross we bare. God is allowing it for a reason. Jack doesn't allow his disease to get the best of him. I see so many adults (including myself) at times, let are trials get the best of us. We shouldn't do that. The trial whatever it is then wins. Jack rules his mito disease, it doesn't rule him. I just worry that as an adult he will change. I pray and trust in God he will not. I see so many adults let there condition, disease, trial, ect..rule them. It might be by anger, self pity, unforgiveness, ect. There are not many of us that over come as adults.

I am learning to try to look at each day and not project. A great friend taught me that. I look at today and what Jack can do today and we will take tomorrow as it comes.