I have talked to Chris’ dietician on the phone today and Chris is officially off any nutritional help via his PEG tube. It means Chris is 100% on oral food. I have forgotten to say so far that for whatever reason Chris stopped drinking fluids orally couple of months ago, he used to be good at drinking through a straw but now he simply refuses to. Last time I was there and tried to feed him liquids, he just shakes his head and refuses to suck. It means his water intake via PEG will increase.
Gabriel had an amazing time at Disney this past weekend, it was tiring but so much fun – at least for him. I do not understand adults who enjoy going to Disney as it certainly would not be by choice of vacation if it was not for the pure joy of seeing my son so happy and excited.
I know I have written less and less and I know so many people – friends or otherwise – follow the blog. I do not want this to be one of those blogs that go mute one day by lack of things to be said. I want everyone to know what is going on… Things are changing inside me as I come to a stage of accepting Chris’ condition. It is so sad but somehow I am not the fighter I used to be…
This has been a very painful year for me emotionally – to the point of feeling physically sick constantly. A pain in my throat, stomach, chest so often… I have done some difficult things in the last months. First I have donated and given away many of Chris clothes/ shoes. Secondly I have disconnected his mobile phone in which his voice was recorded on his voice message. It was a combination of practical need for space and being rationale about costs (I was paying monthly for a phone which was not being used). I cried so much over these decisions.
I have also come across an email Chris sent me before we came to London. I was smoking a lot and he wrote me an email about health. This is a bit of what he wrote me (2005 before our coming to London):
“… how can you go to bikram yoga everyday where you detoxify and sweat etc., and then smoke cigarettes. It's seems very contradictory. Sweating out the impurities, and then filling your body back up again. And I know you're looking good on the outside, but this smoking thing is taking it's toll on the inside where it's not visible. And if you want to eventually have more children it's really something you should think about. Your age plus the fact that you're smoking again adds significant risk to birth. I just want to have healthy children and see there parents healthy also. I think health is the most important thing in life. You can have all the money in the world, but if you're miserable or diseased or physically disabled - then how can you enjoy it. I very excited about the possibly of starting another chapter in life with you. i love you!! Chris”
I am crying as I read this. I was physically sick for days over this email. I am sad beyond words at what has come to be of Chris’ life… and hurt and guilt-stricken at not being able to continue my fight and advocacy for him because I am so tired and overwhelmed…
I am focusing a lot of my energy on finding answers on a spiritual level to be able to heal. It is hard when you are an analytical practical logical non-religious being as I am. I do not believe in an omnipotent G_d that blesses some and punishes others. YET I know there is a purpose on Chris’ journey which is beyond my comprehension and I need to believe that there is more than just random unfair chance on his fate. I am working on finding answers for this now more than ever.
No, I have no interest in meeting anyone or want to "move on" with my life. I am just tired and overwhelmed, and sometimes I just want to have my own time. I was always transparent (and too open) in my postings. Since Chris injury, my husband and soul mate Chris was and has been the only love in my life, in my heart, in my thoughts, in my physical time. I know we lived something unique that will never be replicable. I miss him every day still and I can not wait to be with him again someday…
I know Chris would understand and want Gabriel and I to be happy. Gabriel also loves his daddy so much but he simply does not want to get out to the hospital either any longer …
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High emotions
Comments
Re: High emotions
by
Annemarie Frank
on Fri 29 Aug 2008 06:04 AM BST | Profile | Permanent Link
Koo,
There are numerous people who follow this blog - friends of yours/Chris', direct siblings/parents/cousins of Chris', those who have a loved one who similarly suffers from a brain injury, and even "random" people who learned of Chris' situation one way or another. There is no "normal" cookie cutter way of responding to your situation. No one can possibly understand fully what you are going through - each situation is different. No one is judging you - and if they are, you should just ignore it as it's wasted negative energy. What's important now is for you to find balance in your life & to keep healthy physically and mentally as best possible - as Chris suggested in his loving note to you. You do have an intense personality (right?!) which is now coupled with a "ton of weight" on your shoulders both emotionally and physically. Last time I saw you in June, I worried about your stomach/heart pains and your lack of ability to sleep. Take your time in understanding what works best for you, Chris and Gabriel in terms of plans. Seek solace in those you trust and savor time with people, places and experiences that bring you peace and tranquility within the context of your life. You are admired and no one can judge. Take your time and acknowledge and own the feelings you have now as they are valid. I/we support you but want you to be healthy. It's not fair what happened to Chris & I pray for him continually. I also pray that you continually build the capacity to deal w/ this unfair situation of what happened to Chris - in the way that works best for you all things considered. I support you & love you as so many of us do. I just felt the need to comment publicly as I feel you expect others who read this blog have certain expectations of you. Let that go....there's no recipe for this situation which I know must be so very hard for an analytical person as yourself (it takes one to know one...wink, wink!). Love you, Annemarie xo Re: High emotions
by
sharron
on Sat 30 Aug 2008 04:30 AM BST | Profile | Permanent Link
Hi Koo,
You poor thing. The conflicting feelings you must have as you struggle day to day to find strength to cope with the loss of Chris as you once knew him. Turning that cell phone off must have been absolutely heart breaking. I can never totally understand what you are going through, and I know that there is nothing that anyone can say that can really make this easier for you. Nevertheless, I feel compelled to remind you that you have support from all those who love you as well as those who tune in on this blog for even a glimpse of your life with Chris--as it was then, and as it is now. I only knew Chris in High School, and so I can't speak to the man that he became, but I truly believe based on the way you so beautifull described him, that Chris, loves you and would ultimately want you to be happy. From all you say about Chris, I can only imagine that it would cause him the same physical pain you are experiencing, to know that you are hurting in this way. I am sure that his heart would beam with pride knowing that you have gone to hell and back as his advocate. And I believe that he would want you to be the best mother you could be to Gabriel--even if that means cutting back on your time at the hospital to accomplish that goal. Chris would want you to take the break that you previously felt too guilty to take for yourself, so that you could find peace in this "new life." Perhaps you would be doing Chris the greatest honor by remembering how he loved you and what he would want for you. Remember that Chris would want you to forgive yourself for reclaiming your own life, and finally coming to terms with the tragedy which has befallen you. If there was some way to suspend your pain, be it through a higher power, or a whirlwind vacation, or some other indulgence, do it, Koo. Let yourself heal in whatever way you can. As hard as it may be to accept, just because Chris may not be able to fully heal, doesn't mean that you can't. Your life will never be the same without him, but Chris would want you to go on being the same, strong, determined, beautiful woman he fell in love with. My thoughts and prayers are always with you, Sharron Re: High emotions
Hi Koo!
I know this sounds terribly UNoriginal of me to say, but I just wanted to comment that I agree 110% with what Annemarie and Sharron said. They wrote the type of things I would have written (well, aside from the parts about knowing Chris, since obviously I've never met him). At any rate, these two ladies made nothing but excellent points and observation, so I will simply, and humbly, second them. :) You are an amazing wife and mother, and you deserve all good things in life. Remember to take care of YOU, along with taking care of Chris and Gabriel. Your faithful reader and occasional commentor, Shari in California P.S. My mom and I are caregivers for my dad, who is 85 years old and has advanced COPD, plus the early stages of dementia. He certainly does not need the type of care Chris does, but I can still empathize with what it feels like, in general, to take care of an ill and/or disabled loved one. :( Re: High emotions
by
Kristine Abrams
on Thu 04 Sep 2008 02:30 AM BST | Profile | Permanent Link
Koo,
I went to HS with Chris also and so I too only know of him then. I feel so priveledged to have been a reader of this blog. You have poured your heart and soul into Chris and his care, and you have bled your emotions onto this blog. I always have been very impressed with how you were able to share, I mean REALLY share on this blog, which many whom you dont even know read on a daily basis. I wish that I can say that I would be the same person you were if I were in your situation, but I don't know if I could. Your life has been so difficult and you have worked sooo hard keeping the peices together. I am sorry that you are truelly hurting so much and I hope that you can find a better place for your mind, heart and soul, so Gabriel can see his mom REALLY happy and without worry. I am so happy for you and Gabriel that you have always made a blatant effort to spend the special time with Gabriel and amongst all of the "noise" in your life you really made it a point to try to sheild Gabriel from it as often as possible. I wish you only the best in your future and I hope you will not feel the pressure of those that disagree. You are really a dedicated, caring person. I support you in any way possible and I am thinking about you and your family always. -Kristine |
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