inspiring HOPE
HOPE, by definition according to Webster's Dictionary, is:
- A feeling of expectation and desire for a certain thing to happen
- A person or thing that may help or save someone
- Grounds for believing that something good may happen
- Want something to happen or be the case
- Intend if possible to do something
Over the last 2 months, HOPE has made an appearance through conversations, meetings, reminders of the past and thoughts about the future. HOPE is a part of our everyday life. HOPE comes in all shapes, all forms. HOPE may look one way to you but another way to someone else; even within the same family; or even within the same situation. What may seem rational to one; may seem irrational to another. HOPE changes depending on the situation. HOPE can look one way today but a different way tomorrow. HOPE? What does it mean to you? What does it look like?
Nine years ago, Thanksgiving week, November 21 - 27, 2010 - the four of us, Brian, Becca, Ian and I, we were picked up by a limo and whisked away to the airport. We were heading to Walt Disney World and Universal Studios in Orlando, Florida, to meet SPIDERMAN for Ian's Make-a-Wish Trip. We had no idea what to expect or what was in store for us. Ian's, wish granters, filled us in and made all the plans. Nothing had been left to chance, if we wanted, we got. All we had to do -- pack and wait for the adventure to begin. Then I had no idea - HOPE. Putting one foot in front of the other, taking it day by day, living in the thick of things as many, including, Brian, Becca, Ian and I, just trying to figure it all out. What was it, well then I would have told you it was whatever was the underlying reason of Ian's symptoms. Over the years and today, I will tell you it was HOPE.
Every year as Thanksgiving week, comes; I am brought back to the memories of November 2010. Not just because of the 100's of photos we took but also because of the memories in my heart and mind. For Ian, while he had started to show disease progression, it was the right time for to go, he was at his "healthiest", well healthiest considering. VRK1; Pontocerebellar Hypoplasia (PCH1A) - those letters had no meaning to us then. So...without knowing the journey which laid ahead of us; we left for our stay at GIVE KIDS THE WORLD (GKTW) - Where Happiness Inspires HOPE, we made memories, we were "normal", we didn't get stared at; where we could just be.
GKTW Village (an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families) was born because of one little girl, Henri Landwirth, a Holocaust Survivor, and Disney World. According to their website, their goal, quite simply, is to provide everything these deserving families need to make their trip the vacation of a lifetime. For us, not just Becca and Ian, but for Brian and I, it truly was a vacation of a lifetime. Seeing the photos and remembering the smiles on the twins faces....what it meant to all of us. For that, I am thankful and grateful. We had hope. Hope for...well hope. Hope comes in all shapes and sizes at different times and different situations.
Nine years ago, Thanksgiving week, November 21 - 27, 2010 - the four of us, Brian, Becca, Ian and I, we were picked up by a limo and whisked away to the airport. We were heading to Walt Disney World and Universal Studios in Orlando, Florida, to meet SPIDERMAN for Ian's Make-a-Wish Trip. We had no idea what to expect or what was in store for us. Ian's, wish granters, filled us in and made all the plans. Nothing had been left to chance, if we wanted, we got. All we had to do -- pack and wait for the adventure to begin. Then I had no idea - HOPE. Putting one foot in front of the other, taking it day by day, living in the thick of things as many, including, Brian, Becca, Ian and I, just trying to figure it all out. What was it, well then I would have told you it was whatever was the underlying reason of Ian's symptoms. Over the years and today, I will tell you it was HOPE.
Every year as Thanksgiving week, comes; I am brought back to the memories of November 2010. Not just because of the 100's of photos we took but also because of the memories in my heart and mind. For Ian, while he had started to show disease progression, it was the right time for to go, he was at his "healthiest", well healthiest considering. VRK1; Pontocerebellar Hypoplasia (PCH1A) - those letters had no meaning to us then. So...without knowing the journey which laid ahead of us; we left for our stay at GIVE KIDS THE WORLD (GKTW) - Where Happiness Inspires HOPE, we made memories, we were "normal", we didn't get stared at; where we could just be.
GKTW Village (an 84-acre, nonprofit resort in Central Florida that provides weeklong, cost-free vacations to children with critical illnesses and their families) was born because of one little girl, Henri Landwirth, a Holocaust Survivor, and Disney World. According to their website, their goal, quite simply, is to provide everything these deserving families need to make their trip the vacation of a lifetime. For us, not just Becca and Ian, but for Brian and I, it truly was a vacation of a lifetime. Seeing the photos and remembering the smiles on the twins faces....what it meant to all of us. For that, I am thankful and grateful. We had hope. Hope for...well hope. Hope comes in all shapes and sizes at different times and different situations.
One of the secrets of being successful is to follow through with a good idea. A lot of people have good ideas, but instead of acting upon them, they talk about them and don't do anything. You have to have enough faith in yourself to believe in your ideas and to act upon them. If you fail, so what? It is much better to fail than not to try at all. In fact, I'd much rather do something, than talk about doing it. ~~Henri Landwirth
HOPE happens when someone sees something, decides that it is desirable, realizes that they may not get it, but believes that there is still a chance of getting it. HOPE is often a long-lasting emotion. HOPE is not a single thing. It can range from virtual certainty (positive, the best) to utter desperation (negative, the worst). It can range from one extreme to the other and everything in between, for each situation. It can be for something in the immediate future or it can be for something far off. "You can raise a person's HOPE, dash it on the rocks of uncertainty, raise it out of the waters and toss it around until the other person will grasp at whatever straw you throw at them."
Can HOPE really be simple? Having HOPE can be simple, it is the follow through that can be difficult. It may be out of your control to have your HOPE come to fruition. What about society, does it dictate what HOPE should look like for each person, each family, each set of circumstances, each, well just each? Who gets to say what your HOPE looks like?
YOU DO.
The actual hope that people feel does not necessarily match the real probability of success. Every parent hopes for their children to live their best life possible. Yet, you don't have control of all that goes into your child's best life possible. What we HOPED for Ian's best life possible changed more times than I can count, well actually, what we HOPED for Becca's best life possible changed more times than I can count. What we didn't have control over was that PCH1A came into our lives. What we didn't and don't have control over is the current prognosis for children with any type of PCH. As current years turn into the future years, we have HOPE that others who possess different skills than us, will change HOPE into reality. What we do have control over and HOPE is how and what we do with what we don't have control over.
Some days all we hoped for was a good day. Hope for Ian and Becca to be happy. To open the door to our home and see the sparkle in Ian's eyes. To open the door to our home and see Becca smiling and laughing. To have our community support all of us, even when we didn't know what we needed, even when we didn't realize it was HOPE. Looking back, I can say we always did and do have HOPE, even without realizing what we did and do HOPE for. Even when we cannot change the ultimate outcome, we can almost always find ways to improve the journey. There is always HOPE.
You never know until they are gone just how many lives they've touched. Even those you'd never expected for them to touch. There is not a day which goes by that I don't wish for my family to physically be complete. That will never be, my family will always be complete in my heart. After living through our journey...I do my best to HOPE. Hiding behind my past is never going to get me anywhere in life. Worrying constantly. Have courage. Finding a way to move forward, move past the fear? Despite all the obstacles we've overcome and the hole that lies in Becca, Brian and my heart, it's about still living life without fear. Brave, hopeful. HOPE helps you to not become someone who isn't truly living, but just going through the motions, never experiencing anything just breathing. We may not always be successful with this and sometimes it is one step forward, two steps back, but we will keep moving forward. I do know the 13 physical years, Brian and I had with Becca and Ian are what have made us who and what we are.
Constantly changing...HOPE does. We always have HOPE, even when we don't realize we do. HOPE is simple. HOPE is complex. HOPE is powerful. Just HOPE standing all on its own. HOPE is ALWAYS HOPE,
Can HOPE really be simple? Having HOPE can be simple, it is the follow through that can be difficult. It may be out of your control to have your HOPE come to fruition. What about society, does it dictate what HOPE should look like for each person, each family, each set of circumstances, each, well just each? Who gets to say what your HOPE looks like?
YOU DO.
The actual hope that people feel does not necessarily match the real probability of success. Every parent hopes for their children to live their best life possible. Yet, you don't have control of all that goes into your child's best life possible. What we HOPED for Ian's best life possible changed more times than I can count, well actually, what we HOPED for Becca's best life possible changed more times than I can count. What we didn't have control over was that PCH1A came into our lives. What we didn't and don't have control over is the current prognosis for children with any type of PCH. As current years turn into the future years, we have HOPE that others who possess different skills than us, will change HOPE into reality. What we do have control over and HOPE is how and what we do with what we don't have control over.
Some days all we hoped for was a good day. Hope for Ian and Becca to be happy. To open the door to our home and see the sparkle in Ian's eyes. To open the door to our home and see Becca smiling and laughing. To have our community support all of us, even when we didn't know what we needed, even when we didn't realize it was HOPE. Looking back, I can say we always did and do have HOPE, even without realizing what we did and do HOPE for. Even when we cannot change the ultimate outcome, we can almost always find ways to improve the journey. There is always HOPE.You never know until they are gone just how many lives they've touched. Even those you'd never expected for them to touch. There is not a day which goes by that I don't wish for my family to physically be complete. That will never be, my family will always be complete in my heart. After living through our journey...I do my best to HOPE. Hiding behind my past is never going to get me anywhere in life. Worrying constantly. Have courage. Finding a way to move forward, move past the fear? Despite all the obstacles we've overcome and the hole that lies in Becca, Brian and my heart, it's about still living life without fear. Brave, hopeful. HOPE helps you to not become someone who isn't truly living, but just going through the motions, never experiencing anything just breathing. We may not always be successful with this and sometimes it is one step forward, two steps back, but we will keep moving forward. I do know the 13 physical years, Brian and I had with Becca and Ian are what have made us who and what we are.
Constantly changing...HOPE does. We always have HOPE, even when we don't realize we do. HOPE is simple. HOPE is complex. HOPE is powerful. Just HOPE standing all on its own. HOPE is ALWAYS HOPE,
Comments
Post a Comment