Asking for help…

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Let me tell you a little bit about my husband. He is an amazing man. He is strong. He is very smart. He is protective. He is incredibly giving and boy is he incredibly handsome!!! He loves his family and friends and they never doubt or question that love. If you know the Big He, really know him,  you know this. Some people may be thinking, “really, he seems like such a smart ass most of the times”. Well he is that too, but just below the smart-ass exterior is a big ole mush monster. This is the incredible man I know and have loved for so many years. I have watched as he has run to family/friends/neighbors at a moments notice. He is there before they even knew they needed help. He has even been known to run into a neighbor’s burning house to help put out a gas fire.  He never think twice about helping someone in need. Even now, facing his own terminal disease, he thinks of others before himself.

So why is it so difficult for him, for me, for our family to ask for help? I am not sure why this is?  But it is. While we are doing the best with what we have been dealt, sometimes it just is not enough. We are trying so hard to live and make the memories we know we will need to see us through the tough times, but we must also deal with the other consequences of this disease. For us, right now it is finding the money to get the Big He retired. Everything seems to be happening so fast and I have found myself now realizing this is something we cannot do alone. We do need help and we have had friends and family ask what they can do. At this time, we need help with getting the Big He retired. So, I have set up a giveforward page to help us with that goal. Below is a link to that page.

https://pages.giveforward.com/other/page-msf5hy/

Thank you in advance for your prayers and help during this difficult time.

All my love,

The She.

His update: Things are definitely  progressing. We picked up his wheelchair on Friday. Very difficult I have to say. I know for him, but for me as well. We know what this means, it means this disease is not slowing. We know that he will need that chair because the disease is robbing him of his ability to walk. He gets very tired very easily now. He is seeing some decline in his breathing, he cannot cough as hard as he use to. He gets short of breath by doing such simple tasks. Last night I got to watch the concern and fear in my son’s eyes as his daddy had a little choking episode. The fear we all have about this disease is overwhelming. Can I  just say, I hate this horrid disease. I hate what it is doing to the love of my life, to our family. It is so hard to wrap our mind around the fact that this disease has been around for such a long time yet there is NO cure. It is hard to wrap my mind around the fact that my handsome, strong and loving husband has this awful disease.

 

 

 

 

 

 

 

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Do you see what I see?

For months now I have found myself paying more attention to my surroundings. I am not sure that before Alpha Lima Sierra I was as observant of people and places. I think I was doing what most people do, just going through the motion of this busy life of ours. Now, this disease has caused my family to slow way down even though it may seem  we are on the go, go, go. What I mean is that we are enjoying the moment. Paying more attention to what we see and feel and just being present.

That’s what this entry is about. Being present and observing the surroundings.  Some make me sad, well honestly most of my observations do. But you know that’s okay, what is happening is a very sad thing, but it is because of the Alpha Lima Sierra we are taking a step back and being present in our life. I hate that it took this to make us enjoy our time on Earth.

One thing I find myself doing a lot is checking out my surroundings to see how   wheelchair accessible things are. In stores and restaurants I check to see if the doors are wide enough. Are tables too close together. Is there a ramp available or how about an elevator instead of stairs. In the back of my mind I know this will matter in the future…distant future I pray. It will be the difference between helping my Big He enjoy the world around him and not have to deal with limitations. My goal is to help him bust through any limitations that may present themselves. After all, we are two clever people and don’t really take no or can’t as the last word.

I also pay attention to couples. Young couples and old couples. I watch them walk across the street, grocery shop or just sit in their car together as we are parked on Mopac in rush hour traffic. That really saddens me. While I try and stay positive there is apart that looks at these scenarios and know those will be things that I will miss dearly. That is why I cherish every hand holding, every kiss, every “I love you” and every trip to the grocery store with him.

I watch how people interact with each other. How people seem so angry at things that just don’t matter in the long run or in the end. How people put off the important things for those things that again, don’t matter in the end. That angry driver, the misread facebook post or the job that takes and takes….just does not matter in the end. They are energy and time suckers.

So, do you see what I see? I hope you don’t see these things for the reasons I do, but I do hope you take a moment, take a breath and be present. Try not to get mad at your spouse for things that won’t matter tomorrow, instead of getting angry at the crazy drivers don’t reciprocate with the same. And just ignore the crazy FB post. That is a huge time sucker.

All my love,

The She

The Big He’s update: We can see the progression of this disease in his hands. Things that require fine motor skills are getting harder. He gets pretty tired when he walks so we are looking at getting a wheelchair. We continue to move toward a more cleaner diet actually trying to go gluten free. Okay, that is hard and gluten free bread just sucks! There are no real trips planned in the next few months but the big trip is right around the corner in December. We are still trying to get the Big He retired. I have an online fundraising page to help raise the money we need to buy out his retirement and will post that in the next day or so.  We ask that you continue the prayers for slow progression and that a management is developed to prolong the life of PALS (People with ALS).