I have always believed in fate. I am an everything happens for a reason kind of girl. However, although I believe that we cannot control our destiny; I do believe that we can decide what we do with what happens to us, and this can directly affect the outcome. Have you ever heard the quote “never let fear decide your fate?” Well, I truly think that we should not allow fear to dictate the outcome of our fate.
I received a text from my mother saying she works with someone who knows a lady whose husband passed of ALS, it explained that they had a power wheelchair that she wanted to give to someone who needed it and would we be interested. First, I will say that ALS is so strange in that it almost becomes normal to talk about death in the present tense. It is difficult to explain, but we are preparing for the timeline we have been given, but our hearts are telling us Bert will beat those odds and be the one who is the exception to the rule, or maybe just maybe something, a treatment or a cure will be found in time…the normalcy of death and being proactive is I guess coping and also preparing for the “just in case.” Anyway, we think it makes life easier to ease into the stages of ALS before they slap us in the face. So, this offer sounded good to me. I was a little nervous to bring it up to Bert, but I texted him and he said sure call the lady.
I got the number from my mom, procrastinated for a few days and then finally made the phone call. A very nice woman answered the phone; I introduced myself and explained why I was calling, although she knew already. I told her I was very sorry for her loss and we talked about her husband and their story of ALS. That’s the other thing about this disease, when you meet someone else who has or had ALS in their lives it seems there is an immediate connection, they automatically understand exactly what is happening and there is no awkwardness to the meeting. Her husband sounded like an amazing man, who was as determined and upbeat as Bert, he seemed like someone who lived his life with purpose and to the fullest. We decided on a date and time that she would deliver the wheelchair.
On Sunday, I was a little nervous for the afternoon to arrive; I wasn’t sure how it would go, how she or her children would feel, how we would feel. I told Sophia and Alex earlier in the week that a lady would be coming and bringing a wheelchair for dad, I told them not to be scared, that it would be ok, we would be getting ready for when dad needs to use one. I explained that the family who was bringing the wheelchair lost their husband/dad to ALS and they wanted to help us by giving it to us for dad to use. Sunday afternoon arrived and the doorbell rang, Sophia ran to answer it and I heard her happily greeting the family at the door and inviting them in. I came to the door first and met them, a soft spoken very kind woman and her beautiful grown but young children. Bert came in behind me and we all made our introductions, I made Alex come upstairs from his xbox and say hi, then we talked about how her husband was diagnosed, we talked about clinic and the wheelchair, until finally I invited them to sit down and visit…as I am writing now I am feeling guilty because I didn’t even offer them anything to eat or drink! The woman’s son showed Bert and me pictures of his dad a handsome man who looked happy, they explained that he had a wonderful sense of humor and Bert and I said he seemed like someone we would have gotten along with great. Sophia sat on the floor beside Bert listening intently and looking at the pictures too, the woman explained to Sophia that the tube in her husband’s nose was called a bipap and it helped him to breathe. We explained that maybe dad might need that at some point, and the family said it was comfortable for him and he was able to talk and eat with it so she should not be afraid of things like that. I think it was nice for Sophia to meet other people who have knowledge of ALS and hear from them not to be afraid.
The wheelchair tutorial: after our visit we ventured out to the garage where I had made space for Bert’s new ride and we learned how to drive the wheelchair as well as all the gadgets that came with it. The chair is awesome, I mean if you have to have a power chair…it is a shiny red sporty chair, with two head rests to choose from and multiple different supports and leg rests, it has two different ways to control the chair and two batteries, an oxygen holder, even a mount for a bipap or ventilator, it has a very comfy cushion too and a cup holder for your cappuccino or in Bert’s case a beerJ I wasn’t a half bad driver, I needed to keep it on power mode 1 (that was the mode with the icon of a turtle) but I am sure I can get the hang of it and Bert will be good I am sure of that. The young man said if you’re good at video games you won’t have a problem, so Sophia and Alex will be fine. Sophia took it all in…Alex wasn’t into more than saying Hi. After, the driving lesson we thanked this wonderful family who we made a connection with through this awful disease. Bert and I told them we felt good about the wheelchair because it was coming from a person and his family who was positive, determined and lived life to the fullest, it was a chair that had a good vibe that held hope and we felt like an angel was watching over us. In some way it is comforting to know this man even if it be through some pictures and the stories from his children, to know that his family is “ok” and he is in heaven made receiving this chair special. We are so very grateful for the fate that brought us together on Sunday afternoon.
Some may say why are you not cursing this disease, why are you grateful, this terrible illness takes and takes…yes it does, it takes, it messes things up, it sucks, but we are all given a life, a path; and whether you believe in a God, in fate, or in nothing at all you still have the choice to make the best of this life and to believe that ALS will not take the most important of things, your determination, your attitude, your love. Bert and I will always find the positive, we will find it for ourselves, and especially for Sophia and for Alex, and fate may have brought us here, but we will not let fear determine the outcome.
On Monday as we were driving to soccer practice we happened to be talking about the new chair, Sophia was her usual positive self, saying dad it looks really “young” you know not like an elderly person’s chair, it would make you so much faster! I asked Alex what he thought and he said well I am in the middle…we all agreed its ok to be in the middle not everyone adjusts at the same pace. We will work together as a team like we always do and we will find our positive.
You will never untangle the circumstances that brought you to this moment. Embrace your….fate.
xoxo Jennifer
I received a text from my mother saying she works with someone who knows a lady whose husband passed of ALS, it explained that they had a power wheelchair that she wanted to give to someone who needed it and would we be interested. First, I will say that ALS is so strange in that it almost becomes normal to talk about death in the present tense. It is difficult to explain, but we are preparing for the timeline we have been given, but our hearts are telling us Bert will beat those odds and be the one who is the exception to the rule, or maybe just maybe something, a treatment or a cure will be found in time…the normalcy of death and being proactive is I guess coping and also preparing for the “just in case.” Anyway, we think it makes life easier to ease into the stages of ALS before they slap us in the face. So, this offer sounded good to me. I was a little nervous to bring it up to Bert, but I texted him and he said sure call the lady.
I got the number from my mom, procrastinated for a few days and then finally made the phone call. A very nice woman answered the phone; I introduced myself and explained why I was calling, although she knew already. I told her I was very sorry for her loss and we talked about her husband and their story of ALS. That’s the other thing about this disease, when you meet someone else who has or had ALS in their lives it seems there is an immediate connection, they automatically understand exactly what is happening and there is no awkwardness to the meeting. Her husband sounded like an amazing man, who was as determined and upbeat as Bert, he seemed like someone who lived his life with purpose and to the fullest. We decided on a date and time that she would deliver the wheelchair.
On Sunday, I was a little nervous for the afternoon to arrive; I wasn’t sure how it would go, how she or her children would feel, how we would feel. I told Sophia and Alex earlier in the week that a lady would be coming and bringing a wheelchair for dad, I told them not to be scared, that it would be ok, we would be getting ready for when dad needs to use one. I explained that the family who was bringing the wheelchair lost their husband/dad to ALS and they wanted to help us by giving it to us for dad to use. Sunday afternoon arrived and the doorbell rang, Sophia ran to answer it and I heard her happily greeting the family at the door and inviting them in. I came to the door first and met them, a soft spoken very kind woman and her beautiful grown but young children. Bert came in behind me and we all made our introductions, I made Alex come upstairs from his xbox and say hi, then we talked about how her husband was diagnosed, we talked about clinic and the wheelchair, until finally I invited them to sit down and visit…as I am writing now I am feeling guilty because I didn’t even offer them anything to eat or drink! The woman’s son showed Bert and me pictures of his dad a handsome man who looked happy, they explained that he had a wonderful sense of humor and Bert and I said he seemed like someone we would have gotten along with great. Sophia sat on the floor beside Bert listening intently and looking at the pictures too, the woman explained to Sophia that the tube in her husband’s nose was called a bipap and it helped him to breathe. We explained that maybe dad might need that at some point, and the family said it was comfortable for him and he was able to talk and eat with it so she should not be afraid of things like that. I think it was nice for Sophia to meet other people who have knowledge of ALS and hear from them not to be afraid.
The wheelchair tutorial: after our visit we ventured out to the garage where I had made space for Bert’s new ride and we learned how to drive the wheelchair as well as all the gadgets that came with it. The chair is awesome, I mean if you have to have a power chair…it is a shiny red sporty chair, with two head rests to choose from and multiple different supports and leg rests, it has two different ways to control the chair and two batteries, an oxygen holder, even a mount for a bipap or ventilator, it has a very comfy cushion too and a cup holder for your cappuccino or in Bert’s case a beerJ I wasn’t a half bad driver, I needed to keep it on power mode 1 (that was the mode with the icon of a turtle) but I am sure I can get the hang of it and Bert will be good I am sure of that. The young man said if you’re good at video games you won’t have a problem, so Sophia and Alex will be fine. Sophia took it all in…Alex wasn’t into more than saying Hi. After, the driving lesson we thanked this wonderful family who we made a connection with through this awful disease. Bert and I told them we felt good about the wheelchair because it was coming from a person and his family who was positive, determined and lived life to the fullest, it was a chair that had a good vibe that held hope and we felt like an angel was watching over us. In some way it is comforting to know this man even if it be through some pictures and the stories from his children, to know that his family is “ok” and he is in heaven made receiving this chair special. We are so very grateful for the fate that brought us together on Sunday afternoon.
Some may say why are you not cursing this disease, why are you grateful, this terrible illness takes and takes…yes it does, it takes, it messes things up, it sucks, but we are all given a life, a path; and whether you believe in a God, in fate, or in nothing at all you still have the choice to make the best of this life and to believe that ALS will not take the most important of things, your determination, your attitude, your love. Bert and I will always find the positive, we will find it for ourselves, and especially for Sophia and for Alex, and fate may have brought us here, but we will not let fear determine the outcome.
On Monday as we were driving to soccer practice we happened to be talking about the new chair, Sophia was her usual positive self, saying dad it looks really “young” you know not like an elderly person’s chair, it would make you so much faster! I asked Alex what he thought and he said well I am in the middle…we all agreed its ok to be in the middle not everyone adjusts at the same pace. We will work together as a team like we always do and we will find our positive.
You will never untangle the circumstances that brought you to this moment. Embrace your….fate.
xoxo Jennifer
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