The happiest part of my day came (after an argument) when Daniel made a decicion I was very happy with. Since the summer time Daniel has been talking about his annual New Year’s Eve party with his close group of buddies. As his circumstances got more critical he has never stopped asking about his ritual evening with his friends. Then when the news of isolation came his hopes of his evening grew dim, as did his mood. He has been fairly down lately because of everything he can’t do and can’t have and has been difficult to console at times. He has been in constant communication with his friends throughout all of this but when I spoke to one of the moms about arranging for him to go and almost everything was going to work out Daniel fell apart because one friend has been recently sick. Daniel had an emotional discussion with me that lead to a huge argument and both of us in tears and in the end he was right and the discussion ended. He chose not to go because it was not worth it. He told me his friends would be there for him no matter what and one night wasn’t going to make a difference. If he gets sick because he rushed it then how would they feel and all of it wouldn’t be worth it. He said he would sacrifice anything to not end up in the hospital again. He hates it there and would miss anything good forever to not have to go back there. Well if that didn’t break my heart then the next text an hour later did a dance on it. That friends mom called to tell me he had gone to the doctor to get checked out to make sure he was good enough to play with Daniel (so to speak) clear chest, no symptoms and safe enough. Plus all his friends are willing to wear masks if that will make Daniel feel better. Hey last year when the party was here I made them all were glittery hats and beads… are masks really that much worse. Well with the efforts of all his friends Daniel made his own choice and decided he wants to go tomorrow night and celebrate (a day early) New Year Annual Boys Night. It will be his first outing. Ours too. We will take him and I will certainly be there taking pictures with his friends (whether he likes it or not) and then Rob and I will leave him in a very trusted household with his friends for a short time to reconnect. I told Rob he can take me to the food court at Target for a corndog for all I care as long as someone else is cooking it and cleaning up. This will be very scary for Daniel I am sure but I know it will take him less than a minute to fall into the comfort of his trusted friends until he feels the full warmth of their complete love and friendship after such a long time. I have a feeling the rules of bro-hugs may go out the window for one night as well.
I barely now what day it is, but I do know we are all doing great. Daniel especially. He is such a champ. He has figured out that narcotics are not our friend and it is best to take as little of them as possible. He was taking so much that the collateral damage was taking its toll and he decided it was not worth it. He cut down to almost none and is getting himself back into a much more alert state and because of this is feeling physically better as well. This has allowed more time for … nothing. He is still busy with football and video games although today he went to do a live show at Seacrest studios since last Friday they were closed for the holiday and this Friday they will be again. I think he was happy to be in the studio chatting it up again. He is so in his element when he is talking football. And me, I haven’t had time for much of anything but more cooking 3-5 fresh meals a day and keeping up with the house cleaning and medical up keep. This afternoon I left Daniel alone for the first time and went to the orthodontist with Matthew. It was nice to give him that attention for a few minutes and Daniel did just fine. While we were gone he sent us a video of him walking up and down the hall back and forth for 1 minute with the dog. With the weather being so cold but him finally being able to be mobile again we really need to figure out an indoor exercise program. It is amazing how he became so sedentary so quickly again. Long gone are our walking days already.
The happiest part of my day came (after an argument) when Daniel made a decicion I was very happy with. Since the summer time Daniel has been talking about his annual New Year’s Eve party with his close group of buddies. As his circumstances got more critical he has never stopped asking about his ritual evening with his friends. Then when the news of isolation came his hopes of his evening grew dim, as did his mood. He has been fairly down lately because of everything he can’t do and can’t have and has been difficult to console at times. He has been in constant communication with his friends throughout all of this but when I spoke to one of the moms about arranging for him to go and almost everything was going to work out Daniel fell apart because one friend has been recently sick. Daniel had an emotional discussion with me that lead to a huge argument and both of us in tears and in the end he was right and the discussion ended. He chose not to go because it was not worth it. He told me his friends would be there for him no matter what and one night wasn’t going to make a difference. If he gets sick because he rushed it then how would they feel and all of it wouldn’t be worth it. He said he would sacrifice anything to not end up in the hospital again. He hates it there and would miss anything good forever to not have to go back there. Well if that didn’t break my heart then the next text an hour later did a dance on it. That friends mom called to tell me he had gone to the doctor to get checked out to make sure he was good enough to play with Daniel (so to speak) clear chest, no symptoms and safe enough. Plus all his friends are willing to wear masks if that will make Daniel feel better. Hey last year when the party was here I made them all were glittery hats and beads… are masks really that much worse. Well with the efforts of all his friends Daniel made his own choice and decided he wants to go tomorrow night and celebrate (a day early) New Year Annual Boys Night. It will be his first outing. Ours too. We will take him and I will certainly be there taking pictures with his friends (whether he likes it or not) and then Rob and I will leave him in a very trusted household with his friends for a short time to reconnect. I told Rob he can take me to the food court at Target for a corndog for all I care as long as someone else is cooking it and cleaning up. This will be very scary for Daniel I am sure but I know it will take him less than a minute to fall into the comfort of his trusted friends until he feels the full warmth of their complete love and friendship after such a long time. I have a feeling the rules of bro-hugs may go out the window for one night as well.
2 Comments
Ilana Steinberg
12/29/2014 03:31:05 pm
Nadine, you have my utmost respect and admiration, for the attitude you have taken through all of this. Your strength, your honesty, your boundless love and devotion to your son. You have taught us all so much, throughout your difficult journey. We are thinking of all of you and wising you HEALTH and fulfillment in 2015.
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baba cookie
12/29/2014 03:56:14 pm
I want to wish Robbie. Nadine. Matthew and Daniel all the best for the new year
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