I'm still on my quest to find equipment for Noah. Unfortunately, I feel like I'm just stuck in the mud with my options and resources. We want to go to the Village Inn and eat out like other people get to do, but we can't because Noah doesn't have seating, I can't afford to buy him the Seat 2 Go out of pocket and I can't get help through Medicaid, and can't find any organizations that can help me. I want to get him adaptive spoons that have velcro straps to go over his hands to work on self feeding, can't get those either. I have to give the borrowed cuddlebug back in a few days, and there is no one out there able to help me purchase another $3,000-$4,000 mobility chair for him. I want to get Noah a Dukki Pediatric Commode Chair, and was told that Medicaid will not approve it because Noah has a shower chair and they consider them one in the same. I found Noah on the floor this morning, yet Medicaid won't allow him a Sleep Safe Bed. Finding foundations for help is like finding a needle in a hay stack. Sometimes I feel like I could do internet searches until the cows come home and still come up empty handed. I lack the time, resources and the ability to network efficiently to hold fundraisers. You watch your circle of friends and family dwindle as they realize that Noah's condition is not temporary and that our lives will be permanently and forever altered. I simply feel stranded. I have a child with needs and can't move forward obtaining any of it.
The only highlight is Noah qualified for an adaptive tricycle, and we are hoping that he'll be able to get the AmTryke-9xs soon. Noah of course does not have the ability to ride a bike on his own so his little hands and feet have strap on gadgets while we push him from the back. We are hoping though it will be therapeutic for him. His TAOS arrive next week. I am curious to see how that works differently from his gait trainer. I hear though I should expect him to flop over in it since he doesn't have trunk and head control. So I am really not sure how comfortable that will be for him if he drapes over it. But the orthotist thought it would be beneficial for him, so we'll see.
I was talking with a special needs dad the other day that has two teenage children that have I believe a neuromuscular disorder, I don't believe either one can self feed, I know they cannot reposition themselves, both are in power wheelchairs, and at least one is on a pulse ox while sleeping. He reminds me so much of Chris, this devoted dad and husband. I have such admiration and respect for them. Dads that would do literally anything for their special needs children. This dad sleeps on the floor next to his children at night so he can turn them, and be alert for their oxygen monitoring needs. His cell phone goes off not because someone is calling him but because he set the alarm to remind him of medication his children need. No one could ever comprehend how much love and devotion parents like us put into our children. We give up literally our lives for them. Not one thing is ever about us anymore. Yet you'll never hear us complain, we carry this heavy load and responsibility on our shoulders while attempting to project to the world we will be okay - even if we are crying on the inside, not because we've lost a normal life, but because we cannot fix our children. We are the walking wounded.
It grows increasingly difficult to listen to parents who brag about their children reading at four months old, being a "genius," bumper stickers that gloat and advertise that their child is the smartest, most talented human being to ever walk the face of the earth. They have no sense of what I would give to have my child just say one word to me, even if he could never read or never write, or if he could walk five unassisted steps, if he was even able to wrap his arms around me and hug me. I go through everyday feeling shattered and broken, I try to glue my heart together long enough to be the best mom I can be. I cling to wishes that with each new sunrise that Noah will do something remarkable that will inspire me to grow roots of new hope. The cycle is endless and I feel as if my soul is at unrest because I am always searching and trying to find ways to make Noah's life easier and better.
Luke's milestones are coming so fast, so beautifully and effortlessly, yet I haven't been able to record them because I almost feel guilty that I couldn't record them for Noah, I hold these dates in my mind. His first smile, his first laugh, his first rollover. They aren't written but simply etched in my heart. It seems unfair that one can do things that the other cannot. I feel that they both should be completely equal. I try to buy them both toys at the same time, even knowing that Noah cannot likely play with his, I already anticipate such guilt when I can offer Luke a piece of solid food, but can't for Noah. Luke somehow looks at me with these most patient loving eyes, reassuring me daily that we're all in this together. He allows his big brother to inadvertently swing his arm in the wrong direction, hitting him, or to unintentionally kick him. He already understands, as if God whispers to him you will be the most remarkable little brother to a very challenged older brother.
"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
The only highlight is Noah qualified for an adaptive tricycle, and we are hoping that he'll be able to get the AmTryke-9xs soon. Noah of course does not have the ability to ride a bike on his own so his little hands and feet have strap on gadgets while we push him from the back. We are hoping though it will be therapeutic for him. His TAOS arrive next week. I am curious to see how that works differently from his gait trainer. I hear though I should expect him to flop over in it since he doesn't have trunk and head control. So I am really not sure how comfortable that will be for him if he drapes over it. But the orthotist thought it would be beneficial for him, so we'll see.
I was talking with a special needs dad the other day that has two teenage children that have I believe a neuromuscular disorder, I don't believe either one can self feed, I know they cannot reposition themselves, both are in power wheelchairs, and at least one is on a pulse ox while sleeping. He reminds me so much of Chris, this devoted dad and husband. I have such admiration and respect for them. Dads that would do literally anything for their special needs children. This dad sleeps on the floor next to his children at night so he can turn them, and be alert for their oxygen monitoring needs. His cell phone goes off not because someone is calling him but because he set the alarm to remind him of medication his children need. No one could ever comprehend how much love and devotion parents like us put into our children. We give up literally our lives for them. Not one thing is ever about us anymore. Yet you'll never hear us complain, we carry this heavy load and responsibility on our shoulders while attempting to project to the world we will be okay - even if we are crying on the inside, not because we've lost a normal life, but because we cannot fix our children. We are the walking wounded.
It grows increasingly difficult to listen to parents who brag about their children reading at four months old, being a "genius," bumper stickers that gloat and advertise that their child is the smartest, most talented human being to ever walk the face of the earth. They have no sense of what I would give to have my child just say one word to me, even if he could never read or never write, or if he could walk five unassisted steps, if he was even able to wrap his arms around me and hug me. I go through everyday feeling shattered and broken, I try to glue my heart together long enough to be the best mom I can be. I cling to wishes that with each new sunrise that Noah will do something remarkable that will inspire me to grow roots of new hope. The cycle is endless and I feel as if my soul is at unrest because I am always searching and trying to find ways to make Noah's life easier and better.
Luke's milestones are coming so fast, so beautifully and effortlessly, yet I haven't been able to record them because I almost feel guilty that I couldn't record them for Noah, I hold these dates in my mind. His first smile, his first laugh, his first rollover. They aren't written but simply etched in my heart. It seems unfair that one can do things that the other cannot. I feel that they both should be completely equal. I try to buy them both toys at the same time, even knowing that Noah cannot likely play with his, I already anticipate such guilt when I can offer Luke a piece of solid food, but can't for Noah. Luke somehow looks at me with these most patient loving eyes, reassuring me daily that we're all in this together. He allows his big brother to inadvertently swing his arm in the wrong direction, hitting him, or to unintentionally kick him. He already understands, as if God whispers to him you will be the most remarkable little brother to a very challenged older brother.
"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.