Bad Night

Jack had a very bad night. He had the worst tetany episode that he has ever had. Usually when he has a episode it last any were from 20 minutes to an hour in a half. I try not to give him the medication for it unless I absolutely have to due to side effects. I usually rub his legs and try to help him get through it.

Well, last night he woke up at 1am. Last nights episode was bad and he was in a great amount of pain. He was crying and tossing and turning. I tried rubbing his legs, but it didn't provide him much comfort. After about 45 minutes he asked me to get him medication. I got him his medication for when he has one of these episodes. It continued for about another 30 minutes and he fell asleep. I thought it was over and I was wrong. 20 minutes later he woke up crying in pain. He was tossing and turning. He said I just want to sleep but my legs will not let me. I rubbed his legs and tried to get him through it. After about 45 minutes he fell asleep again. Thinking this was it I started to fall asleep. Then after about 15 minutes he woke up in pain again. This time he was even more upset. He said he felt like he was going to get sick. I had to carry him into the bathroom since he couldn't walk at this point. He got sick and preceded to have full body tremors. Then I got him back in bed and he had the tremors and I rubbed his legs. This lasted about another 45 minutes. His father works nights and I called him to let him know about the bad episode. He talked to Jack to try to calm him down. Jack finally fell to sleep. When he woke up later this morning he said his legs didn't hurt. He was very shaky. He has been all day. His balance has been off. He is pail and has dark circles under his eyes. This episode was a long hard one for us both.

It is one thing to have a sick child. It is another to have a child in pain and there is nothing you can do. Usually the medication helps. This time it didn't that much. I couldn't give him anymore medication after the first dose. The feeling of not being able to take his pain away was horrible. I have been there before but this was bad. He is such a trooper when he is in pain. I just new based on how he normally reacts that this was very bad. He is nice and sweet even when in pain. I hope he can carry that with him through his life.

Every time we go through things with Jack it makes me think and learn a lot. It makes me learn a lot about life in general and my son. Jack got up this morning and it was a new day. He wasn't being upset about last night.He wasnt angry because he lost a lot of sleep. He doesn't ask why me? It made me think that as adults sometimes we are ridicules. We cant forgive. We stay angry and bitter. We hurt others. We turn are back on each other. We cant look at ourselves and blame others. We let things fester. We don't always trust in the lord like we should. We don't trust each other. Most people I know, once hurt we cant forgive, understand, or start over.

Jack made me think. He woke up today and yesterday was behind him. No anger, bitterness, sadness, nothing! He was tremoring and weak but his spirit was strong. He loves me regardless of the fact I cant take his pain away. He trusts me even though I fail him. He forgives me even though I cant fix everything. He believes in me when know one else does.

If you are ever blessed enough to spend a good amount of time with Jack you will get to know his spirit. There are some people that Jack just loves and has bonded with. Last night he asked about these people. Why I wondered to myself. Thinking about them brought comfort and strength.Most of these people probably don't even know how much they mean to Jack. When in pain he found comfort in thinking of them.

Jack is definitely in a down turn. There is no cure and no prognosis for this disease. Every day is a struggle for Jack. When I really stop and think of how this child deals with his life it makes me see how ridicules a lot of us adults can be. Life is so short. Forgive, let anger and bitterness go. Change unhealthy relationships. Don't just throw them away. In time you can make them healthy and different. Anything is worth fixing. Jack has shown me that is so many ways. Everything we do in some way or another effects are children. We don't even realize that most of the time. Hold tight and fight for those you care about. When life seems so bad think of all your blessings. Most of all fight for what you believe in or you will fall for anything.

My son is my inspiration. I have changed a lot in the past year. I have changed dramatically in this last month. My children are my main priority. W e all say that as parents but do so many things that don't always impact them in the best ways. Love your children. Listen to what they have to say. Learn from them, pray for them, and hold them tight.

I pray with age Jack can keep this same attitude and fighting spirit that he has. It seems to me that as adults we loose some very important parts of us at times. We let hurts and life's trials get us down. We need to have the victory in Christ Jesus!

Please keep Jack in your prayers. He is my little trooper. He is an inspiration.

Jack is not doing that well at this time. He had a 24 hour stomach bug. This can be very dangerous for Jack. We are suppose to take him right to the hospital for hydration when this occurs. I waited longer then I should have but didn't want to put Jack through that unless totally necessary. Thank God Jack did OK. He is a little week and pail but doing much better.

We went to see Jacks specialist here a few weeks ago. Jack is having some of his issues heighten at this time. Due to his unusual weight gain and constant appetite and craving for water, they are having us test his sugar. They don't think he diabetic necessarily but that his sugar could be off due to his disease. We have been testing him for a few weeks now. He is having high levels here and there. We are to monitor him till his next appointment and they will go from there. Jack is doing well with the multiple daily finger pricks. They messed with his medications and is now on 4 liquids a day, 5 pills, and 2 inhalers and his nebulizer if needed. Jack as always is a trooper and does well taking his medication. He does get sick of it when it interrupts things he is doing. He has to take some of these medications three times a day. Jack has been complaining of leg pain a lot lately and his tremors and fatigue are up.

Jack is very excited about Christmas. He loves snow and gets very happy when he sees it on the ground. He cant wait till there is enough to go play in. He is also very excited to show people his new book. He doesn't get it but got to see one of the love for Jack cookbooks. The cookbook came out very nice . We appreciate Michelle so much for heading this up and putting it together. We are very thankful to those of you who are purchasing them and or trying to sell them. They can be ordered from Jacks website, www.loveforjackmclean.com . You can also contact Michelle peters. You can find her contact information on the website as well.

Thanks to everyone who has been praying for Jack and are family. This has been a very hard year for us. We pray 2009 will be better. We just have to trust in God and keep moving forward.