November 2006 - Posts
I keep thinking - a year ago today I was... and remembering Michael being at Rusk, the good and the bad. Kylee is right there are some amazing, caring people there, other hospitals, even some other churches could take a lesson from them.
Hi Jill - how is it going? Are there any Thanksgiving type celebrations there?
Well yesterday Michael got sick - vomited - 2 times, I hope this isn't going to be something that is a problem with the new food. I wonder if there is something we do differently or something different about the g-tube bags. Mostly I really wish he didn't have to deal with it. But, Michael takes it in stride, he had a smile on his face a few seconds after and he definitely does a better job of handling it, no more coughing for hours or days after he gets sick. On the good side, he had the best sleep he has had in a while and woke up with a smile on his face.
That sure makes the day better!!! I can come to work with a smile on my face thinking about that.
On the way to work I was listening to Chris Rice, this guy writes some good songs.
We're getting ready for Thanksgiving, I'm looking forward to it. This morning Deborah mentioned to Michael that he might be able to try some good Thanksgiving food, he smile big and let out a sound that clearly said he wants some of that.
Michael went for another trip to Columbia this week, it's always good to see everyone there and he got to show off a little bit. He got another adjustment on his Baclofen - the stuff that helps his muscles to relax - it's helping a little.
He continues to do more, little by little. As I've said again and again, we have to be patient, like the wave with his left hand - he might wave real big one day and then it is very hard for him to do that the next day. He's working on making sounds and moving air in and out of his mouth instead of his nose, that's a big one. We continue to work on his ability to communicate with others and our ability to communicate with him too.
Christine, Connie and I met with someone to help plan out Michael's transition to becoming 18, it was very good, we learned a lot. With all the good information we also got a glimpse of how well this process has gone for us. God has really taken care of us financially!! We all need to thank him for that continually. With all that Michael is getting and all that he requires in a weeks time we could all be toast financially, now and then we hear that not everyone is as fortunate as we have been. God is awesome! He and his word are where all my hope is.
Proverbs 2
The Value of Wisdom
1 My son, if you receive my words, And treasure my commands within you, 2 So that you incline your ear to wisdom, And apply your heart to understanding; 3 Yes, if you cry out for discernment, And lift up your voice for understanding, 4 If you seek her as silver, And search for her as for hidden treasures; 5 Then you will understand the fear of the LORD, And find the knowledge of God.
Michael is back with Dad now, it's nice to have him home. with me - not to say that he isn't at home with Christine.
This morning as I was leaving Deborah came running out telling me I had to come in and see him, "Michael is waving with his left hand" I went back inside and he was smiling and making sounds and she said well he stopped now but he was waving, just a little with his fingers on his left hand. So I told him - way to go - and waited a little bit. Sure enough he moved his fingers up and then moved his 3 little fingers in a wave. This is huge!! His left arm and hand seem to be coming around little by little.
Michael's sound seem to be more like words and sentences now. Maybe it's just me, but something is different. Up to now when he has made sounds or "voiced" as it's called, the sounds have been like moans, like he's just moaning with nothing more specific to it. But, recently there seems to be something he's thinking more though behind his voicing. Hopefully we'll see more of this.
(Pro 3:5-7) Trust in the LORD with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Be not wise in thine own eyes: fear the LORD, and depart from evil.
Michael is at Christine's this week. I hesitate saying anything else 
. I'm glad that he and his mom will have some time together but I do miss him.
I've been told recently that I need to be less critical and more positive. While I was in the process of grumbling to myself and out loud about that a very good friend of mine, who was totally unaware of all of this, gave me something from the Bible. He quoted to me Philippians 4:8 and 9. God gives us a list of things to think on, then a promise of peace if we do this. He's not saying that we should ignore anything negative things and be irresponsible, he is simply saying, well you can read it, Here it is...
(Phi 4:8) Finally, brethren,
whatsoever things are true,
whatsoever things are honest,
whatsoever things are just,
whatsoever things are pure,
whatsoever things are lovely,
whatsoever things are of good report;
if there be any virtue, and if there be any praise, think on these things.
THINK on THESE THINGS!!!
He goes on to say
(Phi 4:9) Those things, which ye have both learned, and received, and heard, and seen in me, do:
and the God of peace shall be with you.
That really says it all.
It is so easy to think about how bad life is, it’s easy to forget the good things. As one who claims to be a follower of Jesus Christ maybe it shouldn’t be that way, but it is for me. It’s easy to look at Michael and only think about what he is missing or about how much it takes to care for him. It doesn’t seem to come natural to look at how far he’s come. Don’t get me wrong, I trust God, I know he is here with me, with Michael and all our family. I know that he desires to be right there with you. But, it is still very easy to take on the poor me, everything sucks attitude.
A year ago today I was sitting in the back of an ambulance on my way to Columbia Missouri. I didn’t want to be there!!! Of course I didn’t want to be in the situation, I didn’t want Michael to be hurt, but taking Michael to Columbia and LEAVING him, well at that point I felt as low as I have ever felt in my life. Not only had my son lost his life and anything he had with it, but now he was being taken away from me, to someone else’s care. A year ago we had hoped that Michael could stay here in Kansas City, we hoped that he would be able to go to Mid-America Rehab. We had heard about this place called Rusk, in Columbia, but it didn’t really matter how great it was supposed to be. I think I remember talking to Christine and saying, “That’s too far away, it isn’t an option”. But, Michael needed to be farther along than he was before he could go to Mid-America Rehab, they required that he, at least, be able to track with his eyes. At that point there was no tracking with his eyes, there was no control of any body parts. A year ago Michael’s body temperature was controlled by a cooling blanket, his eyes were open but there was no confirmation that he knew anything about his world, there was no confirmation that he had any awareness. Of course I was convinced that he was aware of us, but I was continually reminded by doctors and nurses that it was unlikely. A year ago Michael weighed about 110lbs, his heart rate was between 110 and 150, his breathing rate was more than 20 times a minute. A year ago his immune system was depleted, he had one infection after another, he had a trachea sticking out of his throat, he made no sounds, he couldn’t even breath on his own. In most of this, I was okay, trusting God, a “Cheerleader” was how someone put it. But for me moving him to Columbia was, at least I thought this was more than I could handle. Something interesting and revealing happened on the way to Columbia. We were about half way there when Michael’s eyes caught mine and never left, he fixed his eyes on me and followed me. I moved my head to the right and to the left, he never took his eyes of me. He was tracking. When I saw this, I was mixed with emotion. I was thinking wow, he sees me, he’s looking for me, he’s looking to me. He’s there!!! He’s aware of what’s going on around him! But then I thought – uh, why couldn’t he do this yesterday or last week??? If he had, then he could stay in KC. A feeling of assurance came over me, of God’s presence and direction. As I look back on this year, there is little doubt that he was there with us, that he has been here with us. Columbia was not the tragedy that I thought. It didn’t take us long to see very clearly that Rusk Rehab in Columbia is a very special place and that God would use those people to help bring Michael back to us.
In the midst of all my emotion going to Rusk, I was won over pretty quickly. As they wheeled Michael into his room, his new home for the next few months, one of the nurses immediately reached down and “unplugged” the trachea, within a week, I think, the trachea was removed and he was breathing on his own. I knew he could do it!!
Michael still has a long, long way to go! But, today instead of 110lbs he is about 140, his heart beats about 60 times a minute, he breathes about 16 to 20 times a minute, his temperature and immune system are normal. Yeah he can track with his eyes J, not only that he can give you a look and he can smile. When he smiles it makes everything a little bit easier. Michael can get upset at you and let you know it. Today Michael has use of his right hand and arm and he’s just getting started with his left arm and his legs. While he was at Rusk he worked hard, everyday to regain himself. Today he is still working hard and it is very difficult, but he keeps on keeping on.
I still miss what used to be. I have a picture of him with his cousins on my desk, most of all I miss that for him. I miss that he can’t be with those that he cared for most like he used to. That is life to him. Looking at this picture you can see his contentment, right before the picture was snapped Michael reached out and wrapped his long arms around Craig, Joanna and Beth, he’s smiling, content, you can see him saying “This is good” with his eyes. Yeah I miss that for him. But as maybe you might do sometimes with things in your life, I forget how far he’s come, I forget where he was a year ago today. I must remember to celebrate what God has given me! I have a son, he is here, he is alive and with us today. I love him and I am very proud of him. I thank God for him every day.
Thank you for going with us on this journey, thanks for your prayers and support!
Thank you Lord Jesus Christ for everything!