Ron Smith Is it me or is it IVIG? I think I can see a change in Connor's moods and he is actually looking forward to OT and PT and his appetite has reduced. Maybe there is light at the end of the tunnel about getting out of the hospital.
Connor seems to improve in front of Ron's eyes for the last two days and we are wondering if the IVIG would show us glimpses of improvements this soon? Connor did well again in both his Therapies and the best part is that his appetite seems to recline a bit which is a good thing if you know how much he has gained lately :)
I am calling today's Blog 'Reflection' because I am going to try to put into words were our minds are at this point.
There is no question we are all tired and exhausted but we never wavered on our one common goal as a family ... to focus completely on the well being of both of our boys!
I know for a fact due to some feedback about our blog that you sense my postings to get more depressing or darker. It is amazing how I don't realize it right away myself but I do write what is on my mind and heart and I guess it is changing...
Connor and Alexander, including Ron and I, had a sad week due to Hope's passing and I am amazed on the strong faith and believe in God that Hope's Mom wrote about each and every night in her blog.
Growing up I was raised a Lutheran and I went through all the steps that came with it, from being Baptized as a Baby of 3 months, having Religion classes in school from pre-school to High School and followed by my Confirmation at 14. I got married to Ron in front of a pastor and we had both Connor and Alexander Baptized at the same Church I was raised in in Germany.
Now I know this is not new news but when you are faced with something life changing and it is not for the better you will question 'why' at some point. When you see children in pain you ask 'why' even more so. I have to say I try to hold on to God and I know I wrote about him placing Angels along our journey and I still think he is! ... BUT this is where I am on a cross road now ....
In the following passage I am challenging you to open your mind and to join in and send us your thoughts on the matter.....
I am kind of thinking right now that if your child is faced with a terminal disease (and I am NOT just about writing about Connor), it would almost seem beneficial if you were an Atheist. After all then it would be easy to rationalize that life is just tough and bad thinks happen to good people, children in that matter, and that it is just up to us to try and deal with it. After all bad things happen everywhere and you just have to turn on the news to find proof.
However if you believe in God and feel like God is there with us all along and you believe miracles are happening, then I need to ask you for an explanation as to why is one child more deserving of a miracle and go into remission for cancer or even JDM then another? and why is one child more deserving to live then another? Are we all such sinners that pain has to be handed out in such a broad range?
I know you might say this is just life and that life is not always fair ... and this is exactly were I am leading to. If you are a believer then how can this be happening? how can God not be powerful enough to change things? If God is here with us on earth and he guides us and walks with us but does not change our paths, then I have to question if he is not more like a parent, someone that loves us unconditionally but is not perfect by any means ... and if I question him from being perfect, Am I truly believing in him as I should?
After all of this if you like to see some humor in what happened today then keep reading :)
Last night I went to bed with the best intentions to going to Church so Alexander and I could see some people that have been very kind to us in the past weeks. I got up this morning with all the intention, still, to go to Church. I did not back away from it until 30 min before it was time to go. By then I felt I was not mentally in the right place to enter a Church and I did not feel like smiling and talking to people about how hopeful I was and that all would be fine. I was still prepared to to go because of Alexander, so I told him to get ready but he surprised me by saying he wanted to stay home and play Lego. So right here in front of me was my easy way out and I am not to ashamed to say I took it.
The irony comes that right when Church was done we had a visitor in the form of Mrs. Naomi Morgan. Now I have mentioned the Morgan's before and how much we love and care about them. Naomi came in bearing a Note and Book that reads 'WHY DOESN'T GOD ACT MORE LIKE GOD' by David Blast. Now most of you might not know that Mr. Sandy Morgan is actually Rev. Sandy Morgan. So after taking to Mrs. Morgan for a while it turned out that for once I might be of some help since they got a new phone and had some questions on how to work it. So I followed her home to help with the phone but most importantly get to visit with Rev. Morgan for a while as well. So who better then a Reverent to talk to and be faced with when my mission for today is questioning God? My visit was wonderful and I feel bad, for I am not an easy child of God when it comes down to it right now. I do however promise to read the book!
Can you see now how ironic this was today when I have been writing from the get go on how God is placing angels in my path? and today when I was going to battle against him he placed one of his strongest warriors in my way? I wish I could say I am back on the path that those who believe like to see me on but I am not there at this point in time.
However .... Thank you Naomi and Sandy for being so precious to sit there and listen to my doubts ...... You are true Angels and there is no doubt in my mind about this one :)
There are a few phrases I have to warn you will not be a comfort to us or any family we met on our journey. Please try to see how you would feel when you lost a child and someone would tell you 'God needed her as an Angel more then you did' or 'God has a bigger plan'. There is no comfort to any parents that God would need your child more then you and what the heck means there is a bigger picture? Such easy sayings when you are not traveling that road. I have yet to see a parent that will stand at the grave and say ' I am so glad God took her from me now because I know good will come from this'
I do not want to offend ... you have known from the start that I will always write from my heart......
I am off now to play some promised Star Wars Lego Wii wit my youngest. He has been wonderful today, sweet, attentive and playful :)
Hugs,
R A C A
Wow, no doubt Anke you are dealing with some major stuff. I would love to be someone you can ask questions about God. I most likely won't know the whole answer, but maybe we can talk about it together. I'm praying for y'all lots. Y'all are such an awesome family and parents.
ReplyDeletePlanks and slivers are so deceiving.The reason for Anke to start this Blog was for her to explain what we as a family are going thru and what our future includes. This includes her venting her anger and frustration and sharing her happiness and high points. NOT for every one who has ever opened up a bible to tell us she has the answers. If I remember right, :"We ALL are sinners" so until you walk on water please keep your help to yourself. This is about our son.
ReplyDeleteI don't know where to start, I have been reading your blogs, since the beginning. I am the mom of a 24 year old son, that has had JDM since he was 4years old. I usually don't say anything, but today you hit a nerve. My son was diagnosed 20 years ago by Dr. Pachman, and we were at CMH for about 6 weeks in the beginning. I understand your frustration, because I have been exactly where you are. Dr. Pachman used to call my son here challenge case (that was a long time ago and before she was so popular and she didn't know as much about JDM as she does now). My sister once told me that god gave my son this horrible disease to make me a stronger person, I don't believe that, I think you already have to be a strong person and have a good support system behind you (and it sounds like you do). My Dad (who I just lost a year ago)told me in the beginning when I was feeling down that there is always someone that is worse off than my son (which you already know from experience). We also met so many great people while in the hospital. My daughter who was only 1 at the time of my son's diagnoses put everything into perspective the other day when she had to write a paper in school the other day, she said her brother was her hero and that there were things that she wouldn't have had the same experiences in life if it weren't for watching him go through this. You go ahead and believe anything you want to or have any feelings you have and don't worry about what anybody else thinks, they're not walking in your shoes. So if you feel like venting-vent.
ReplyDeleteTHANK YOU TO A JDM MOM FOR UNDERSTANDING. YOU HAVE BEEN THERE, YOU HAVE WALKED A MILE IN OUR SHOES, AND WE APPRECIATE ANY AND ALL COMMENTS YOU HAVE, OR ANY GUIDANCE YOU FEEL TO SHARE.
ReplyDeleteI have to say when I started this blog I never thought about where it might lead and there was a point when I realized how many are reading it and that some of the things I wrote would not be in tune with everyone. However I made a promise to myself to write exactly what my feelings are each day and there will be positive and funny happenings and there will be sad, frustrating and angry postings as well.
ReplyDeleteI am writing the blog as I am trying to live my life. I am not out to offend or hurt but to be true to myself and stand by what I always say about myself: 'What you see is what you get', in this case what you read.
So THANK YOU to all of you and everyone for showing an interest and posting your thoughts and support here, on FB or by e-mail.
We never asked to 'join' the club of JDM Families but now that we have we found the most caring and kind people. So Thank You JDM Mom, Stenzel Family, Miller Family and those families we met that are fighting or fought cancer, Family DiClementi & Fuller Family. You hearts are huge and I am truthful when I say I wish you were not in this club as well. All our children are beautiful and maybe even superior in character because of their disease ..... Love to all of you! Anke