Friday, October 18, 2013
Friday, October 11, 2013
Lions and Tigers and Shoe Lifts....Oh My.
Recap: The last time I wrote was in June when Norah met Dr. Paley for the 1st time. Since that appointment, she has achieved all of the things he said she would. She's standing, cruising, crawling and taking steps just like any other kid. He instructed us to wait for a cruiser and then begin the shoe lift process.
I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.
Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.
We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"
And then I cried. Alot.
So we waited.
Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.
With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.
1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.
or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."
See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.
So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.
But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.
So you see? How can I complain about her condition when I have all of that? You tell me.
If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!
I am happy to say the reason I haven't written is because there hasn't been much to say. Alot of parents and families encouraged us to just enjoy her before all the treatments and hoopla began and that's exactly what we've done. Knowing we can't do a whole lot at this point, it really wasn't necessary to focus on it, nor was it worth the stress. I heard a country song recently and in the lyrics he said, "It might be off my chest, but it's sure not off my mind." Or something like that. Anyway, that stuck with me.
Rich and I both have begun to notice her discrepancy increasing. We were warned of this. She is nearing the point of where her tip-toeing won't be possible because her foot will just hang in the air. I've noticed she actually already does this when her toes are tired. It also puts quite a bit of pressure on the hip to limp around and tip toe. So after a wonderful few months of "forgetting" about it, we've recently decided it was time for her shoe lift. It's obvious it is holding her back from walking now and obviously we want her to be able to walk so that's the plan.
We thought it was time months ago and had her fitted for her brace only to realize there isn't a single shoe company (atleast to my knowledge) that makes hard-soled shoes smaller then a Size 4....atleast the kind that we need for her. Let me tell you, shopping for shoes for her was BRUTAL. Everywhere I went they looked at me like I had two heads when I said I needed a sneaker in a Size 2 or 3. "She's not ready for a sneaker, here's our non-walkers"......DUH. I must have heard that in EVERY shoe store I went to. But a non-walker soft-soled shoe cannot support a shoe lift, nor hold an ankle brace. "You could buy both?" Negative lady. She doesn't know what these things cost so I wasn't going to rant and rave to her. "One pair", I told her. "She gets one pair." Thus, the need for a sturdy, traditional sneaker that would last until the next shoe lift. So it was basically pointless, soft-soled sneakers that fit her, or giant Size 4 sneakers that were too big for her. I found a pair of dark brown boys shoes at one point that I was pretty close to buying and a pair of Spiderman kicks, but it just made me sad so back on the shelf they went. If this girl wasn't going to wear flipflops and maryjanes like the rest of em', she was going to have really pretty sneakers. I eventually gave up and told my husband, "We're waiting for her feet to grow because I can't deal with this anymore!"
And then I cried. Alot.
So we waited.
Over the last week, we've discussed the shoe lift alot and the best way to go about it. During that time, I've found myself feeling a little like I used to feel. Just short and irritable. We've had such an easy time recently and quite honestly I pushed it so far out of my mind that I just forgot what it felt like to worry about it. By this time next year, Norah will be in a Spica cast recovering from her 1st hip surgery and will have had her lift and brace on almost a year. I seriously can't wrap my head around that. I'm waiting to be pinched. She will be just 2 years old. But I have to keep telling myself, it's a gift. Her doctor, the surgery, all of it....without it, she won't walk.
With that said, there are so many different parts to this situation that I find difficult. However, the one I find myself struggling with the most recently is how I am supposed to feel about it. There are 2 routes you can go.
1: "I'm mad, sad and all of the above because this isn't normal. Kids shouldn't have to go through this. She rocks and is such a good kid and doesn't deserve it. She's just a baby, my baby." And insert sobbing here.
or 2: "This is nothing. Stop complaining because she's alive and healthy and will walk. Some kids never have the chance, some people are on their deathbeds, so shut up."
See how stressful that can be? It's as if I can't seem to find a balance between acknowledging it and allowing grief, yet also showing gratitude and appreciation for how wonderful our life is. I'm honestly not sure what is acceptable or appropriate.
So I'll be honest. I NEED TO CRY. Some people don't. But I do. I can hold myself together for a pretty long time. I'm pretty proud of that actually. But I have to admit, buying shoes for this little girl....I had to fight the tears. It all is becoming so real.
But I will be the first to tell you, and I constantly tell my husband, how blessed we are. The fact that we have a physically disabled daughter that is perfectly healthy and a Mom who stays home with her is enough. It's more than enough. My husband is home for dinner, walks in with a smile and is healthy. I am healthy. We love each other. Alot. We love our daughter, we love our families and they love us. We have people fighting to babysit her, to be around her and love her. We have wonderful neighbors and live in an amazing community. We have an undeniable amount of support around us.
So you see? How can I complain about her condition when I have all of that? You tell me.
If you are not already aware, we have created a fundraiser for The Paley Foundation. You can visit www.fishingforthekids.com for more information. This will be a really exciting event and you can bet on Rich as he fishes for the Bassmaster Classic win!
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