Recently, a friend of mine on face book posted this verse. Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. I stared at the verse for a long time reading it over and over. I wasn't sure why I was so drawn to the verse but the word weary kept jumping out at me. I decided to look up what weary means; it means feeling or showing tiredness, especially as a result of excessive exertion or lack of sleep. To be come tired or wearied by a situation, tired, wearisome, tiresome, exhausted, fatigued. It hit me right in gut. I have been struggling lately and just couldn't find the right word to describe how I was feeling until that word Weary was right in front of me. It was like a light bulb was turned on and I said to myself, yes, that is exactly it! Weary. What a great word to describe how I feel right now.
Weariness is more than just feeling tired. I am reminded daily of how different our lives are from what you would consider the "normal" and have become weary in wishing or hoping that just one thing would be easy. I am weary from wanting things to be different and that my son would find a place were he would feel excepted . I am weary from lack of sleep, being woke up numerous times a night to help Ryan turn over in bed. I am weary watching my mom continue her fight against cancer. I am weary as I watch other people in my life fight sickness. I am weary of seeing so many people I love struggle.
These feelings are not new, I have been on this roller coaster before and know that it will pass and I will be okay with it all but for now I can not give you wonderful words on how I have overcome these recent feelings. I am not to that point yet. So what to do in the midst of all this? I continue on and try as the verse says not to give up. I am holding onto this promise found in Psalms 27:13, I am confident (hope) of this; I WILL(expect) see the goodness (answer) of the Lord in the land of the living! Wait, take heart and Wait on the Lord. HOPE, EXPECT, ANSWER,WAIT!
Sunday, September 23, 2012
Monday, September 3, 2012
A Teachers Mind
I am not a teacher nor do I have the gift of teaching but for many reasons ( I will share more detail in that later), I am feeling God pull me to home-school Ryan for this coming school year . It is not a surprise to me, I have been fighting and ignoring this feeling for sometime now. I have finally surrendered, knowing this is what God wants me to do.
Over the years my boys have had many different teachers. I can tell you from experience that there are those who just do the job, and then there are those who have a passion, a gift for teaching.
My friend Laura has the gift of teaching. I just wanted to share a little in-sight into the mind of a teacher through a phone conversation I had with her recently. We were talking about my decision to home school Ryan. I was saying how unprepared I felt and she was giving me encouragement. We talked about how Ryan and I just recently went to Northwest Trek that Ryan loved to watch the bald eagles. She said homeschooling Ryan is as easy as taking that interest and turning it into a learning experience. I said, your right I can have him look it up on the internet! So much for my great teaching ideas. So here is where the great teaching mind comes in; She said Yes, that is a start but go even further. I then heard excitement in her voice as she began to speak. She said you can easily do a unit study on the Eagle bringing in science, geology, history, art, and even English into the lesson. By this time she was really excited, I could just imagine her face lighting up as she continued to give specific details on how to do it all. I listened and then started to chuckle. Yes, she has the gift of teaching and it was fun to hear all the ideas she had that I would have never thought of. It is funny how she took that one small thing and turn it into so much more, that's the mind of a gifted teacher!
While I am not a teacher, nor to I feel equipped to do this job I do know that for now I will become what Ryan needs. As the saying goes, "God doesn't call the equipped, he equips the called". I am holding onto that truth and thankful that there are a few of those passionate, gifted teachers in my life that I can hopefully call upon when I need help!
Friday, July 27, 2012
Just a "little" blessing ?
I would rather not say who this is but a person in my family has really been having a hard time, going through some difficult struggles.
Last night it seemed like it all came down at once and they were really upset. I had a hard time sleeping last night wishing there was something I could do. This morning I woke up and prayed asking God to please allow something positive to happen to this person today, just something little , something that would encourage them and be a blessing.
As the day went on I prayed this prayer again knowing this person was having such a hard time and my heart hurt for them.
After dinner we got the mail and in the mailbox was a card addressed to this person. As they opened it and started to read it tears came to their eyes. It was a card sent from a friend and in the card was written an actual blessing, the words were short but seemed to be just what they needed at this point in their life. I got tears in my eyes and said to this person, " I just prayed this morning that God would bring a small blessing in your life today, God answered that prayer even before I prayed it". The timing couldn't have been more perfect. Thank you God for answering our prayers sometimes even before we pray them. Thank you for this person who felt lead to write this card. How many times do we get a "feeling" that we are supposed to call someone, send a card , go over and talk with someone, give a hug, and feel funny wondering why and what will they think, but when we do we find out that it was just what that person needed. Today I encourage you if you feel lead to reach out to someone please follow through . You never know if what you say or do is just what that person needed . YOU just might be who God uses to answer a prayer!
Last night it seemed like it all came down at once and they were really upset. I had a hard time sleeping last night wishing there was something I could do. This morning I woke up and prayed asking God to please allow something positive to happen to this person today, just something little , something that would encourage them and be a blessing.
As the day went on I prayed this prayer again knowing this person was having such a hard time and my heart hurt for them.
After dinner we got the mail and in the mailbox was a card addressed to this person. As they opened it and started to read it tears came to their eyes. It was a card sent from a friend and in the card was written an actual blessing, the words were short but seemed to be just what they needed at this point in their life. I got tears in my eyes and said to this person, " I just prayed this morning that God would bring a small blessing in your life today, God answered that prayer even before I prayed it". The timing couldn't have been more perfect. Thank you God for answering our prayers sometimes even before we pray them. Thank you for this person who felt lead to write this card. How many times do we get a "feeling" that we are supposed to call someone, send a card , go over and talk with someone, give a hug, and feel funny wondering why and what will they think, but when we do we find out that it was just what that person needed. Today I encourage you if you feel lead to reach out to someone please follow through . You never know if what you say or do is just what that person needed . YOU just might be who God uses to answer a prayer!
Tuesday, July 24, 2012
Acceptance is does NOT mean you give up.
I just feel like i have to say this, Acceptance does not mean you give up !
For some reason we think that if we accept the difficulties in our lives that we are giving up.
I have been there. Many times, with Ryan . With each loss we have had to face with Duchennes, I have to work through it and get to a place to accept that this is our new normal. It is not easy, I have to work through the fear and feeling guilty that by accepting means giving up hope. That can't be farther from the truth. Anxiety takes a lot of energy, acceptance lowers anxiety , brings much needed peace , and allows you to have the strength to do what is needed to do to get through it.
Over the past 6 years I have also watched my mom go through this with her cancer. I know she doesn't like what is going on, she misses what she used to be able to do, she struggles with tomorrow. I think she feels like if she accepts that things are different than she has given up hope that she will ever be able to do those things again. Once she is able to surrender to the fact that this is what her life is for now that is when the anxiety goes down, and she has more energy to get through the day.
When you are dealing with a difficult thing , you go through a process, part of that is accepting.To get to the place of acceptance is saying, Okay this is the way it is, I may not like it , I can't change it but I except it. What causes so much anxiety is NOT doing this. You can't change what has already happened, you have no control over what might happen, you can't change things by wishing things were different , so surrender all that to God. When you do this your circumstance may not change but accepting this is your life for now, you will be at peace.
I have been there. Many times, with Ryan . With each loss we have had to face with Duchennes, I have to work through it and get to a place to accept that this is our new normal. It is not easy, I have to work through the fear and feeling guilty that by accepting means giving up hope. That can't be farther from the truth. Anxiety takes a lot of energy, acceptance lowers anxiety , brings much needed peace , and allows you to have the strength to do what is needed to do to get through it.
Over the past 6 years I have also watched my mom go through this with her cancer. I know she doesn't like what is going on, she misses what she used to be able to do, she struggles with tomorrow. I think she feels like if she accepts that things are different than she has given up hope that she will ever be able to do those things again. Once she is able to surrender to the fact that this is what her life is for now that is when the anxiety goes down, and she has more energy to get through the day.
When you are dealing with a difficult thing , you go through a process, part of that is accepting.To get to the place of acceptance is saying, Okay this is the way it is, I may not like it , I can't change it but I except it. What causes so much anxiety is NOT doing this. You can't change what has already happened, you have no control over what might happen, you can't change things by wishing things were different , so surrender all that to God. When you do this your circumstance may not change but accepting this is your life for now, you will be at peace.
Sunday, July 15, 2012
Just trying to be helpful!
Jake usually mows the grass but since he is gone and Jeff has been busy working on the Mega ramp (see it in the background of the picture!) I decided I would step in and be the hero. I will mow the grass! It has been a few years since I mowed the lawn but hey it doesn't take a rocket scientist right?
I put on my hat, sunglasses work gloves , ear buds in my ears and got to work. Within a few minutes I realized that it had been along time since I had mowed the lawn. Wow, when did this yard get so big and has this lawn mower always been this heavy to push?
I was plotting along when I ran over Jake's soccer net. Of course this stopped the lawn mower dead in its tracks. Like a little kid I sheepishly went over to Jeff and told him what I did. He looked at the lawn mower and it was a mess. He had to take it into the garage to fix it. It took him over 30 minutes to get the mess cleaned up. He fixed it and once again I started mowing.
Back and forth , back and forth , then I hit something again stopping the lawn mower. I am like, what the heck, I looked down and it was a black plastic tube. I thought, I wonder what that could be? I backed the mower and up and restarted it, thankfully this time it started back up. I proceeded on, happily pushing the mower , enjoying my music when a few minutes later Jeff walked up to me with the black plastic tube in his hand. I smiled , I said what was that for? It was part of the venting for our septic system, oops! Sorry ! I did finally get the lawn mowed after having to restart it about 20 times at least half of those times I had to have Jeff help me since the auto starter was not working.
Having had this experience I have decided a few things. 1) Having a big yard is overrated. 2) We have way too much junk to have to mow around . 3) I am way too old to be pushing a lawn mower. 4) I think Jeff needs to buy a riding mower and finally 5) I bet Jeff won't take me up on my offer to "help" mow the lawn again!
When was a time that your offer to "help" turned into be something more than "help" ?
I put on my hat, sunglasses work gloves , ear buds in my ears and got to work. Within a few minutes I realized that it had been along time since I had mowed the lawn. Wow, when did this yard get so big and has this lawn mower always been this heavy to push?
I was plotting along when I ran over Jake's soccer net. Of course this stopped the lawn mower dead in its tracks. Like a little kid I sheepishly went over to Jeff and told him what I did. He looked at the lawn mower and it was a mess. He had to take it into the garage to fix it. It took him over 30 minutes to get the mess cleaned up. He fixed it and once again I started mowing.
Back and forth , back and forth , then I hit something again stopping the lawn mower. I am like, what the heck, I looked down and it was a black plastic tube. I thought, I wonder what that could be? I backed the mower and up and restarted it, thankfully this time it started back up. I proceeded on, happily pushing the mower , enjoying my music when a few minutes later Jeff walked up to me with the black plastic tube in his hand. I smiled , I said what was that for? It was part of the venting for our septic system, oops! Sorry ! I did finally get the lawn mowed after having to restart it about 20 times at least half of those times I had to have Jeff help me since the auto starter was not working.
Having had this experience I have decided a few things. 1) Having a big yard is overrated. 2) We have way too much junk to have to mow around . 3) I am way too old to be pushing a lawn mower. 4) I think Jeff needs to buy a riding mower and finally 5) I bet Jeff won't take me up on my offer to "help" mow the lawn again!
When was a time that your offer to "help" turned into be something more than "help" ?
Friday, July 13, 2012
My surprisingly respectful son.
Jake has been gone on his mission trip for a week. It is so quiet around here. Jake is my energizer bunny, he keeps going and going and going. He loves to debate (argue) , and he can wear me down but it is funny how the things that seem to drive me the craziest with my kids is what I miss the most when they are gone. Jake has a way adding much needed life to our house. He is a senior in high school this year, I don't even want to think about how much I am going to miss him when he goes to college! Okay, we do have one year left!
Near the end of this school year Jake had to present his portfolio. It is supposed to be a year long project, of course in Jake style he spent the 2 days prior to this presentation doing his year long portfolio. Much to my amazement he had it done on time. He had to present this in front of his school adviser and us.
That morning Jake and I had our usual argument and were running late to get to the school. Once we arrived we walked into the counselors office, Jake shook her hand and then introduced me to her. He then proceeded to come around the table and pulled out my chair for me to sit down. He started off his presentation , it was about 20 minutes long, I sat there in amazement, as he gave a wonderfully prepared, intelligent, detailed, witty, humorous presentation. Stopping occasionally to politely answer questions that he adviser asked. I know I must have had my mouth hanging open in surprise, wondering who in the world is this polite, respectful child ? Who is he , and what did he do with Jake? After it was over , we were walking back to the van I complemented him on a job well done, and how I was impressed with how respectful he was to this adviser. Of course it wasn't long before the old Jake was back arguing with his mom again! It was nice to see this side of Jake, we don't get to see it very often. It is a relief to this mom to known that he does have it in him, that he can be respectful when he wants to be.
Near the end of this school year Jake had to present his portfolio. It is supposed to be a year long project, of course in Jake style he spent the 2 days prior to this presentation doing his year long portfolio. Much to my amazement he had it done on time. He had to present this in front of his school adviser and us.
Sunday, July 8, 2012
Ryan's Maiden Voyage with the Mega Ramp!
This is a great day in the McKenzie's house! Ryan is able to come upstairs once again!
Something so little as a set of steps, causing so much problems. Ryan has not been able to go upstairs in our home, independently for over 4 years! 4 years since he has been able to walk upstairs. Once he was no longer able to walk we used a stair lift to get him upstairs and then transferred him to a manual chair. Since his back surgery over 1 1/2 years ago, he has not been able to use the stair lift which means he hasn't been upstairs in 1 1/2 years! Now that I think about it, this the first time his power chair has been upstairs!
I am SO excited I can't even begin to tell you how happy it makes this moms heart to see my boy in my kitchen again! He had to check everything out, Jake's messy bedroom and of course the refrigerator! The little things, being able to see whats in the refrigerator! He was all smiles!
I wanted to share this happy moment so here is a video of Ryan doing a test run of his Mega ramp. Keep in mind it isn't done yet, still a lot of work to be done, but it is done enough that Ryan was able to give it a try! He made it upstairs and we were able to have dinner around our dining room table as a family!!! I just can't even begin to tell you what that means to all of us!!!!!
So thankful that God gave Jeff the talents and gifted him in such a way to be able to do this. Thank you Grandpa chuck as well for being the apprentice ( clean up man ). Thanks to Jake as well for being the assistant to the apprentice!
Something so little as a set of steps, causing so much problems. Ryan has not been able to go upstairs in our home, independently for over 4 years! 4 years since he has been able to walk upstairs. Once he was no longer able to walk we used a stair lift to get him upstairs and then transferred him to a manual chair. Since his back surgery over 1 1/2 years ago, he has not been able to use the stair lift which means he hasn't been upstairs in 1 1/2 years! Now that I think about it, this the first time his power chair has been upstairs!
I am SO excited I can't even begin to tell you how happy it makes this moms heart to see my boy in my kitchen again! He had to check everything out, Jake's messy bedroom and of course the refrigerator! The little things, being able to see whats in the refrigerator! He was all smiles!
I wanted to share this happy moment so here is a video of Ryan doing a test run of his Mega ramp. Keep in mind it isn't done yet, still a lot of work to be done, but it is done enough that Ryan was able to give it a try! He made it upstairs and we were able to have dinner around our dining room table as a family!!! I just can't even begin to tell you what that means to all of us!!!!!
So thankful that God gave Jeff the talents and gifted him in such a way to be able to do this. Thank you Grandpa chuck as well for being the apprentice ( clean up man ). Thanks to Jake as well for being the assistant to the apprentice!
Thursday, June 28, 2012
Whats the delay?
Whats the delay? We had it all planned and this isn't the way it was supposed to be.
My mom was scheduled to start on a very long day of chemo. They admitted her the night before so they could start this process early in the morning.
Well delay happened. Due to some communication issues my mom didn't get started on her treatment until very late in the afternoon. It was a longer process then normal because she had a negative reaction to this medicine before and they were being extremely cautious with her to help keep that from happening again.
They started off with an extremely diluted amount of chemo then over the course of 8 hours they would slowly increase it until finally it would be at around 90% strength.
We were all a little nervous and knew that if she was going to have a reaction it would probably be with the last round . My moms night nurse came on around 7:30 p.m, by the time he got there they were only on the 2nd of 4 bags of chemo. He came in, checked everything out then went back to get caught up on all her medicines ect. As the evening went on I noticed he was different then all the other nurses my mom had. Aside from being very quiet, gentle and kind, he was very attentive to my mom and he was very organized and was prepared for anything. I felt a calm that I had not felt all day thankful that he was the one to be on duty during that last bag of chemo.
At around 9:30 p.m. they started the last bag, thankfully it all went smoothly. All through the night as we were trying to sleep he would come quietly come in to the room to check on my mom, add more medications and then finally her final drip, a unit of blood.
As mom and I woke up early that morning we talked a little of the previous day, my mom was relieved to have it behind her and yet still a little frustrated that the process took so long and was delayed so long. We then talked a little about our night nurse, We both agreed that he was by far the most efficient of all the nurses she had during her 2 day stay. He came in, took the time to make sure he understood her situation and took the time to explain everything he was doing. He organized medications so he knew exactly where everything was in case he needed it in a hurry. I told my mom that I thought God must have delayed her chemo so that she would get him for the final process. God wanted that nurse to be on guard, to watch over my mom during that final chemo ! God trusted him to take good care of mom, and for that we could see the positive of the delay and the frustration of the day before turned into thankfulness.
I know we have all said or heard the saying "everything happens for a reason", while I believe this to be true, there are many times that we don't ever know the reason why things don't go as planned. This was one time that I am thankful that God let us see the reason for the delay!
What about you, Any situations that you were able to look back on and have that "ah-ha" moment of understanding of why that happened the way it did?
I have to add a PS to this post.
My mom cracks me up. This morning when they brought my mom her breakfast tray she lifted the lid on it, picked up the waffle and said this is gross. She then proceeded to through half of it in the trash because she didn't want to hurt their feelings that she didn't eat it! Then she said, oh I am sorry am I being difficult! I had to laugh, first of all NO she wasn't being difficult but after all she has gone through over the past 6 years, and what she had gone through within the last 48 hours, I think she MORE then earned the right to be a little difficult don't you? My mom! Always worried she is going to hurt someones feelings!
My mom was scheduled to start on a very long day of chemo. They admitted her the night before so they could start this process early in the morning.
Well delay happened. Due to some communication issues my mom didn't get started on her treatment until very late in the afternoon. It was a longer process then normal because she had a negative reaction to this medicine before and they were being extremely cautious with her to help keep that from happening again.
They started off with an extremely diluted amount of chemo then over the course of 8 hours they would slowly increase it until finally it would be at around 90% strength.
We were all a little nervous and knew that if she was going to have a reaction it would probably be with the last round . My moms night nurse came on around 7:30 p.m, by the time he got there they were only on the 2nd of 4 bags of chemo. He came in, checked everything out then went back to get caught up on all her medicines ect. As the evening went on I noticed he was different then all the other nurses my mom had. Aside from being very quiet, gentle and kind, he was very attentive to my mom and he was very organized and was prepared for anything. I felt a calm that I had not felt all day thankful that he was the one to be on duty during that last bag of chemo.
At around 9:30 p.m. they started the last bag, thankfully it all went smoothly. All through the night as we were trying to sleep he would come quietly come in to the room to check on my mom, add more medications and then finally her final drip, a unit of blood.
As mom and I woke up early that morning we talked a little of the previous day, my mom was relieved to have it behind her and yet still a little frustrated that the process took so long and was delayed so long. We then talked a little about our night nurse, We both agreed that he was by far the most efficient of all the nurses she had during her 2 day stay. He came in, took the time to make sure he understood her situation and took the time to explain everything he was doing. He organized medications so he knew exactly where everything was in case he needed it in a hurry. I told my mom that I thought God must have delayed her chemo so that she would get him for the final process. God wanted that nurse to be on guard, to watch over my mom during that final chemo ! God trusted him to take good care of mom, and for that we could see the positive of the delay and the frustration of the day before turned into thankfulness.
I know we have all said or heard the saying "everything happens for a reason", while I believe this to be true, there are many times that we don't ever know the reason why things don't go as planned. This was one time that I am thankful that God let us see the reason for the delay!
What about you, Any situations that you were able to look back on and have that "ah-ha" moment of understanding of why that happened the way it did?
I have to add a PS to this post.
My mom cracks me up. This morning when they brought my mom her breakfast tray she lifted the lid on it, picked up the waffle and said this is gross. She then proceeded to through half of it in the trash because she didn't want to hurt their feelings that she didn't eat it! Then she said, oh I am sorry am I being difficult! I had to laugh, first of all NO she wasn't being difficult but after all she has gone through over the past 6 years, and what she had gone through within the last 48 hours, I think she MORE then earned the right to be a little difficult don't you? My mom! Always worried she is going to hurt someones feelings!
Thursday, June 21, 2012
Newsflash, Jeff and I don't think alike!
I am re-posting this from last year, in honor of Jeff on fathers day. God knew even before Ryan was born that he would need a unique father. One who was creative, could problem solve and come up with unique solutions. A father who at times, would be able to set aside emotion to be able to make hard decisions. I know God gifted and created Jeff in such a way. He created Jeff to be the perfect father for such a difficult situation, not only Ryan but for all four of our boys. I know I don't say it near enough but Thank you Jeff for everything you do, everyday for us!
The following is a re-post from last Fathers day;
News Flash!! My husband and I don't think alike! I know that is a shocking revelation! We have been married for 28 yrs and I still am figuring this out.
This was once again brought to my attention when a few days ago the question on my morning radio station was " What is love and how do you see people living out love for those around them". That got me thinking about those in my life, my husband came to my mind.
Over the past 10 years, since Ryan was diagnosed with Duchennes , Jeff and I rarely talk about the disease and what it means. It is the ever present "elephant" in the room. We know it is there but it is hard to talk with someone who is as close to the situation as you are. Yet I would try to get him to open up, of course without success. I would become frustrated and angry assuming he just didn't care. I thought he was just ignoring it, baring his head in the sand. Well God recently opened my eyes to see Jeff in a different way. While I deal with the tears and most of the everyday care taking of Ryan, God brought to my mind a few unique ways in which my husband is showing his love for our son;
-Flew to California to drive back an affordable wheelchair accessible van that he found online.
-Completely gutted and remodeled our basement to put in a wheelchair accessible bathroom.
-Built Ryan a wheelchair friendly garden box.
-When Ryan had spinal fusion surgery, Jeff sat beside him day and night , very rarely leaving the room.
- Made little blocks that we can take with us to restaurants to put under the table legs to make the table high enough so Ryan's wheelchair can fit under it.
-Welded together and made a type of homemade lift so that Ryan could get in and out of our backyard pool.
- Spent hours, days pouring over deck books, writing up plans and re-writing plans for a new wheelchair ramp/deck to build so Ryan can once again come upstairs, something he hasn't been able to do in over a year.
These are just a few of the things he has done that I just took for granted and as I said recently God showed me THIS is how my husband deals with the disease. He is a fixer and while he can't fix Ryan , take away or stop the progression of the disease, this IS something he CAN do. It is HIS way of showing love to Ryan. Different from mine, as I said we don't think alike, and that's okay!
The following is a re-post from last Fathers day;
News Flash!! My husband and I don't think alike! I know that is a shocking revelation! We have been married for 28 yrs and I still am figuring this out.
This was once again brought to my attention when a few days ago the question on my morning radio station was " What is love and how do you see people living out love for those around them". That got me thinking about those in my life, my husband came to my mind.
Over the past 10 years, since Ryan was diagnosed with Duchennes , Jeff and I rarely talk about the disease and what it means. It is the ever present "elephant" in the room. We know it is there but it is hard to talk with someone who is as close to the situation as you are. Yet I would try to get him to open up, of course without success. I would become frustrated and angry assuming he just didn't care. I thought he was just ignoring it, baring his head in the sand. Well God recently opened my eyes to see Jeff in a different way. While I deal with the tears and most of the everyday care taking of Ryan, God brought to my mind a few unique ways in which my husband is showing his love for our son;
-Flew to California to drive back an affordable wheelchair accessible van that he found online.
-Completely gutted and remodeled our basement to put in a wheelchair accessible bathroom.
-Built Ryan a wheelchair friendly garden box.
-When Ryan had spinal fusion surgery, Jeff sat beside him day and night , very rarely leaving the room.
- Made little blocks that we can take with us to restaurants to put under the table legs to make the table high enough so Ryan's wheelchair can fit under it.
-Welded together and made a type of homemade lift so that Ryan could get in and out of our backyard pool.
- Spent hours, days pouring over deck books, writing up plans and re-writing plans for a new wheelchair ramp/deck to build so Ryan can once again come upstairs, something he hasn't been able to do in over a year.
These are just a few of the things he has done that I just took for granted and as I said recently God showed me THIS is how my husband deals with the disease. He is a fixer and while he can't fix Ryan , take away or stop the progression of the disease, this IS something he CAN do. It is HIS way of showing love to Ryan. Different from mine, as I said we don't think alike, and that's okay!
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| jeff building a flower box for ryan |
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| Taking apart the old deck |
Thursday, June 14, 2012
My simple little mission.
My mission, whether or not I want it, to get modifications done to Ryans wheelchair. Starting time frame of this mission, Oct, 2011.
Sounds easy right? It all started in October of 2011. Ryan was getting bigger so he needed modifications done to wheelchair so that he could sit correctly in it. We made an appointment with his physical therapist and had the vendor from the local equipment place come. Appointment was quick, got everything down on paper that he needed . They would write the letters of justification, stating why Ryan needed these changes to his chair, contact his doctor for a prescription, and do all the paperwork. I was so happy that it was being done for us and I didn't have to do anything. It would all come together, right?
December 2011, no phone calls yet. I knew insurance companies aren't fast about anything so figured I would give it till January 2012. January came then February. To be honest with you I didn't want to mess with it and was hoping that it would all come through without me having to intervene.
March of 2012 I decided I better figure out what was going on. It does take a while but not usually this long. So i called the Vendor. They had no idea what I was talking about. They had never received any information for any of this! Someone... somewhere, messed up! We had to start the process over. So back to the PT, wrote everything up again and I was reassured it would get done.
April went by, then May, still no information. I was getting rather frustrated at this point so I called the vendor . They had the approval from the insurance for everything but 2 items that were denied, the seat back and the hardware that was needed to put on Ryan's new leg rest! I asked " why was I not notified of this?" Plus how can the insurance deny the hardware needed for the leg rest and Ryan's seat?!? More letters written, approvals needed, letters of justification, doctors notes, quotes for the items etc.
End of May, I made the phone call again. She said "yes, we got the parts in , the shop will call you to set up an appointment after they double check to be sure everything is there." " Finally !", I thought! Well of course I was wrong, 3 weeks go by and no phone call. I called today, middle of June. The girl I talked to said we have it all except 1 part that we are waiting for Ryan's doctor to write a prescription , she said she sent the fax to the doctor last week. Ryan's doctor is usually pretty fast about getting these things in so I asked about the doctor. She said the doctors name and it wasn't even Ryan's doctor. They sent it to the wrong doctor! OKAY , I am in tears at this point. I call her boss, I tell him everything that is going on and finally at 8:00pm tonight he calls me back. Even though we are waiting for the one item they are going to get everything else put on his chair next week. Finally after 8 months of waiting do I dare believe that my simple little mission is finally over?
Sounds easy right? It all started in October of 2011. Ryan was getting bigger so he needed modifications done to wheelchair so that he could sit correctly in it. We made an appointment with his physical therapist and had the vendor from the local equipment place come. Appointment was quick, got everything down on paper that he needed . They would write the letters of justification, stating why Ryan needed these changes to his chair, contact his doctor for a prescription, and do all the paperwork. I was so happy that it was being done for us and I didn't have to do anything. It would all come together, right?
December 2011, no phone calls yet. I knew insurance companies aren't fast about anything so figured I would give it till January 2012. January came then February. To be honest with you I didn't want to mess with it and was hoping that it would all come through without me having to intervene.
March of 2012 I decided I better figure out what was going on. It does take a while but not usually this long. So i called the Vendor. They had no idea what I was talking about. They had never received any information for any of this! Someone... somewhere, messed up! We had to start the process over. So back to the PT, wrote everything up again and I was reassured it would get done.
April went by, then May, still no information. I was getting rather frustrated at this point so I called the vendor . They had the approval from the insurance for everything but 2 items that were denied, the seat back and the hardware that was needed to put on Ryan's new leg rest! I asked " why was I not notified of this?" Plus how can the insurance deny the hardware needed for the leg rest and Ryan's seat?!? More letters written, approvals needed, letters of justification, doctors notes, quotes for the items etc.
End of May, I made the phone call again. She said "yes, we got the parts in , the shop will call you to set up an appointment after they double check to be sure everything is there." " Finally !", I thought! Well of course I was wrong, 3 weeks go by and no phone call. I called today, middle of June. The girl I talked to said we have it all except 1 part that we are waiting for Ryan's doctor to write a prescription , she said she sent the fax to the doctor last week. Ryan's doctor is usually pretty fast about getting these things in so I asked about the doctor. She said the doctors name and it wasn't even Ryan's doctor. They sent it to the wrong doctor! OKAY , I am in tears at this point. I call her boss, I tell him everything that is going on and finally at 8:00pm tonight he calls me back. Even though we are waiting for the one item they are going to get everything else put on his chair next week. Finally after 8 months of waiting do I dare believe that my simple little mission is finally over?
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