Noah's little "Miracle Garden" is doing wonderfully. Every sprout is up and thriving. It really is a special little garden and it is so wonderful to watch it grow. Sometimes it is hard to find the excitement in each day, knowing that Noah cannot catch a grasshopper to show me, he cannot play in a sandbox, or splash in a wadding pool. I don't get to experience any of those things with him. I wish I did. I try to find things to fill that void and occupy that space in my heart that craves such things, like watching a simple garden with the hope that it grows. Yet I still feel so robbed of all the things Noah and I should be able to do together. I'll put Luke in an outfit once worn by Noah, and think this is what he should have looked like, moved like, and sounded like. It feels so unfair that Luke can do these things and Noah cannot. Having a other child that is capable of all physical abilities in no way lessens the pain and loss that you feel.
I feel Chris losing some of his unwavering hopes that Noah will walk and talk. I see him trying to accept things, I hear the worry in his voice - the fear as he tells me Noah must never be institutionalized or put in a group home after we die. It is especially difficult for me as I always lean on Chris for his optimism about Noah, and to see him starting to worry about Noah's future makes it harder for me. We both are starting to detach ourselves from the love we have for this home. Deep down we know time is limited for carrying Noah's growing body up the stairs, and we realize he may not be capable of getting up them on his own. It brings constant uncertainty to our lives. We cannot plan our future in anyway as we do not know what tomorrow will bring us.
Noah seems restless these days, the weather is warmer, and we should be outside doing things, but Noah has no swing set, no outdoor activities. He's getting heavier for me by the day. His long legs dangling as I struggle to carry him. All he has is a therapy mat to lay on to watch the sky and clouds above him. He gets board easily, causing him to have mini tantrums. I feel his frustration, being locked in a body that doesn't work, unable to communicate to me his needs.
I dream of healing, I would the gift of someone or something to repair him. I find myself often searching for hope in all the wrong places. Internet searches for children that are doing better, therapies or equipment that are bringing successes, stem cell therapy clinical trials, the list could be endless. But I am learning hope isn't on the computer, it isn't on a google search, it's not found in someone else's blog or website. If anything you could quite conceivably make your aching heart worse by trying to find it in all those places. I have to find hope by looking at Noah. At his small fragile little body, by looking into his eyes and telling him he can do this, that he himself has to want this for his life as I can't do it for him. He himself is the hope.
"Hope never abandons you; you abandon it."
George Weinberg
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
I feel Chris losing some of his unwavering hopes that Noah will walk and talk. I see him trying to accept things, I hear the worry in his voice - the fear as he tells me Noah must never be institutionalized or put in a group home after we die. It is especially difficult for me as I always lean on Chris for his optimism about Noah, and to see him starting to worry about Noah's future makes it harder for me. We both are starting to detach ourselves from the love we have for this home. Deep down we know time is limited for carrying Noah's growing body up the stairs, and we realize he may not be capable of getting up them on his own. It brings constant uncertainty to our lives. We cannot plan our future in anyway as we do not know what tomorrow will bring us.
Noah seems restless these days, the weather is warmer, and we should be outside doing things, but Noah has no swing set, no outdoor activities. He's getting heavier for me by the day. His long legs dangling as I struggle to carry him. All he has is a therapy mat to lay on to watch the sky and clouds above him. He gets board easily, causing him to have mini tantrums. I feel his frustration, being locked in a body that doesn't work, unable to communicate to me his needs.
I dream of healing, I would the gift of someone or something to repair him. I find myself often searching for hope in all the wrong places. Internet searches for children that are doing better, therapies or equipment that are bringing successes, stem cell therapy clinical trials, the list could be endless. But I am learning hope isn't on the computer, it isn't on a google search, it's not found in someone else's blog or website. If anything you could quite conceivably make your aching heart worse by trying to find it in all those places. I have to find hope by looking at Noah. At his small fragile little body, by looking into his eyes and telling him he can do this, that he himself has to want this for his life as I can't do it for him. He himself is the hope.
"Hope never abandons you; you abandon it."
George Weinberg
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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