tag:blogger.com,1999:blog-2160254255025948623.post1095988468378827234..comments2018-10-28T01:42:57.730-07:00Comments on Mitchell: Rocky RoadAprilhttp://www.blogger.com/profile/16238721361643243830noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-2160254255025948623.post-10081058860287465802012-05-07T19:23:02.560-07:002012-05-07T19:23:02.560-07:00Amy this is DanaKae again. Mtnhomequilter is just ...Amy this is DanaKae again. Mtnhomequilter is just my google acct name. I understand so well what you're going thru. The physical exhaustion is overwhelming, but the emotional exhaustion is just as exhausting and is often forgotten. I can't tell you how many times well meaning people have come up to me and said how they admire my strength and fortitude to endure this trial. I want so badly to just say, you know what, I have days that I don't want to even get out of bed, that I want my old life back so badly it hurts. That there are days that I just can't take it anymore & don't feel strong anymore. Or that I will scream if I have to jump thru one more hoop to make sure my child's next drs appt is covered by insurance. Unless someone has cared for my son overnight for several days, and gets a good idea of what I go thru on a daily basis, they just don't have a clue. And thankfully I have a couple good friends who love my son just as he is and will give me & my husband the break we need for an overnite date. They always wonder how I do it each day though. I've explained that what they see as abnormal is our new normal and has been for the last 7 years. Its just what we do because we agreed to be a parent to whatever child God sent us. I understand the feelings of who is this child in my house? It has taken years to come to terms with the fact that my son may never be the same child he once was. I had to grieve for the son I lost to this terrible disease they call cancer. And on the same hand I have to praise God that He didn't take him away from me, that he trusted me enough to finish the work my son is here to do. You will definately have days of never ending fighting, and days of pure bliss. Take those pictures of good days. It really does help to block out the bad. One thing we've done since the get go, was be very involved with our local cancer society. My son has gone to their kids camp for the last 7 yrs, and 4 yrs ago our daughter was able to start going to a siblings camp yearly too. the kids camp was a Godsend b/c it was a full 6 days of vacation for you as a parent. You didn't have to think about caring for that child for 6 blissful days! You could concentrate on your other kids or yourself and recharge your batteries & not feel guilty about doing it. Another thing we've been able to do is go to Family Camp. It's a retreat in the mtns for the whole family for 3 days & it's just nice to have your meals made all day and all you have to worry about is what kind of fun are we going to have today? And all of the camps are free of charge. We only pay gas to drive 2 hrs away to sun valley for the family camp. Money well spent to us! And it was helpful to be able to talk to other parents who understand the upheaval that cancer is in ones life, they understand so well even if it wasn't the same cancer as your child has. All one cancer family. As far as the amygdalas being the culprit for the outbursts, its very possible, as well as the chemo & radiation. we are in the throws of long term side effects from those awful poisons. All you can do is listen to the advice from the drs you are getting & weed thru it and decide what's best for your child. This definately takes prayer and faith, but don't discount your mother's instinct when it comes to your child. You will still know what's best for him. My prayers will always be for your family. I will always be an ear to hear and a shoulder to cry on, all you have to do is ask.mtnhomequilterhttps://www.blogger.com/profile/02006384145795867397noreply@blogger.comtag:blogger.com,1999:blog-2160254255025948623.post-62170394464661100762012-05-06T19:21:50.101-07:002012-05-06T19:21:50.101-07:00Oh Amy you're family is truly remarkable and s...Oh Amy you're family is truly remarkable and such an example to me. I can't even imagine what Mitchell must be feeling at times, perhaps he doesn't either. It is sad.<br /><br />I love his smile and that picture of him with his sister is absolutely precious!!Saimihttps://www.blogger.com/profile/09205857549533433625noreply@blogger.com