(I don't claim to be an English teacher or a writer, so please forgive my overuse of a period, my run on sentences and my incorrect punctuation.)
A mom shares her frustration: “I’m exhausted, overwhelmed, and wiped out. My friends try to help but they just don’t understand. When I talk about my child’s illness, it makes them uncomfortable. Then I feel bad for burdening them. I feel so alone." Adapted from an article by Lisa C. Greene
I read this article recently and couldn't help but relate to what this woman said. For a good while now, I haven't needed to talk about it. I haven't let it consume our daily lives. Not because I try not to, but because it really just hasn't been an issue. I say that happily. Norah so far, just truly hasn't been affected by her disability. When I say she does things normally, I mean it. Actually better than any of us would have anticipated. I watch her shuffle a soccer ball like nobody's business, shoe lift or no shoe lift. She is quite remarkably the fastest climber I know or have seen. She actually climbed the dishwasher the other day to get to her fish tank. Yes, climbed it like a miniature Spiderman. I find it pretty amazing that she has this unique physical impairment, yet our family has said it many times, "This is her skill. Her gift. She's going to be athletic." Now she's not even two...things can change, I know that. With most things she just right where she needs to be, but physically, the girl is talented. She's just so coordinated. Can you even comprehend what this means to a PFFD parent? It's like a child who can't read becoming a writer someday. It's just refreshing, beautiful and downright awesome. I say this not to boast about her. It's extremely humbling actually. I watch these kids do seriously incredible things everyday. I watch videos of children using their "new leg" for the first time, dancing, using a mobility board to get around while in a spica cast, climbing a tree with a prosthetic foot or a 4 inch shoe lift....it's just remarkable. Norah is remarkable. I tear up as I re-read that sentence and check for a spelling error. :) I tear up because it's here. How did I let so much time pass without any preparation? You fool.
I have intentionally avoided support groups, facebook pages, researching and any preparations regarding Norah's condition and future treatment. It is extremely easy to r.s.v.p. to the biggest pity party you've ever been to if you allow yourself and if you allow it to consume you. This being the "Nikki Howes Pity Party" or (insert your name here). I told myself this over and over to a fault almost. I soon started to realize sometime around March that her surgery was this year. Now that it is June, the realization has come by storm that we visit Paley in just a few weeks to talk about final details for surgery and then sometime after her 2nd birthday in September, it's here. So I thought, "Wow, maybe there is a reason all these parents are researching carseats and discussing details 1-2 years in advance." I honestly thought it was a bit excessive and part of me even thought it was slightly dramatic. (I apologize) But here we are, insert foot in mouth and mind. :) I'm trying to put all the pieces of this puzzle together now. I've learned that this comes in cycles, seasons even. It doesn't mean I never coped. It just means that I put it into a file in my brain, left it there and will now take it out and process it. I can't help but feel a bit foolish though for waiting until June to begin thinking about this.
Damn you Netflix!
With that said, I'm a mess. Just a big, sloppy, ranting, emotional mess. Not all the time. I'm not going to tip over, don't worry. I am fully capable of experiencing joy and choose it quite often in fact. :) There were TONS of times over the past year where it literally never crossed my mind. She would wear her shoes each day and it still didn't cross my mind. Lately though, we're encountering the things we knew would eventually occur. Her toes get little blisters, now that she is communicating, I hear "Owwww" alot while she points to her foot, she's beginning to protest when I reach for her brace and lifted shoes over her "regular" ones, she screams bloody murder when her feet are sweaty and she can't take her own socks off and all that girly drama that goes with a PFFD diagnosis. :) Because she has tiptoed so well over the last year, I've allowed it. She's close to not being able to do that anymore and its uncomfortable for her after a while anyway so we wear our shoes more frequently. This has prompted me to be more aware, ask more questions and make more phone calls. I think about this everyday now, multiple times per day. I HATE IT. I am not sure what to prepare for, what to ask, what to start working on...Pinterest surprisingly enough had about 4 pins relating to this. Can you believe that?! I have not even begun to process the lengthening. Honestly, I don't want to. I have zero interest in thinking about that. Right now I'm taking the "hip file" out and processing that one. How the heck do you operate on a leg that is the length of my forearm? It's just so tiny. I don't even want to know. It's like pregnancy all over again, except there isn't a book about it everywhere you turn. How do you be a good Mom and prepare and be a warrior for your kid but block out the emotional baggage that doing that brings? How will I teach her to accept it, love herself and quite frankly get over it because this is how it is, if I'm crying everytime I have to call BlueCross. I had a dream the other night that Norah was older and didn't want to go outside. She came to me and said "Mommy, I am not going anywhere because everybody stares at me." She also had a 4 FOOT lift with a fixator on her leg..kind of funny how dreams are crazy like that. Anyway, I proceeded to put on mismatched shoes. A bright pink sneaker and a brown cowboy boot and said, "Let's go. Nobody is going to look at you because they will be looking at me." She smiled and I woke up crying. I guess you can be a champion for your baby and just find a closet after they go to bed? Atleast that's my plan.
It's that time again. Shoes. UGGGGGHHHH, Shoes. I have to say, the PFFD Facebook page came through for me because after nearly 3 weeks of just trying to get ONE question answered by not only Blue Cross but Hangar Prosthetics also, I got an answer from several parents. More than several in fact. YOU GUYS ROCK. I also lucked out and walked into Payless WITH a toddler in tow and found 2 pairs of shoes on sale in less than 10 minutes. That never happens. Thanks to all our fellow PFFD friends and family and local friends and family, I did find several Shoe Cobblers (yes honey, I said it) nearby that are much less expensive. It is incredible how generous people have been, handing down shoes and offering ideas, information and support. Norah's currently sporting her 2nd cousin Zoey's old shoes, that have become a favorite so it just goes to show how one
person's "old" is another person's "new". They actually look brand new. (Thanks Lindz)
As I finish this post, I keep going back to what I said about procrastinating and feeling like a fool for just now preparing for something so big in our lives. I realize, I have prepared. I have prepared in a way that will get us through this whole thing like warriors. I have prepared spiritually. If you aren't a believer, it's okay, keep reading anyway. You owe it to Norah. :) Since Norah's birth, we found our church "home", River Run Christian Church, I found a Women's Bible Study group that has taken my heart to an entirely new level and my faith and love for the Lord has never been stronger. Truly. I had never really read the Bible before her. I studied scriptures here and there and prayed often and tried to be Christ-like but He is so much a part of my day, all day, everyday that dealing with this whole thing is entirely different. It's easier. I can be a mess right now and can cry at times during the day when I let my mind wander and know that it's alright. There is a scripture for EVERYTHING. They are all over our house. Post-its everywhere helping me and guiding me through my life. The Bible is seriously cool..I mean it's a handbook for your life. We read handbooks on fixing things around our home, why not our lives? I have let a lot of things go that pull me from my relationship with God and sought out things that draw me nearer. All of this prepares me for her treatment. It prepares me and strengthens me for the pain. There is no time for drama, no time for wasted emotions because it takes from Norah. Rich and I are stronger than ever because we have to be. Hard times bring us closer now. We need each other and lean on each other because we are weak. We seek out God because we are weak. And He is just equipping us, equipping our marriage and our family for a task that goes beyond our control. I can write everything I wrote, every complaint, every annoyance, every bit of thanks knowing where it all leads. My faith doesn't mean I'm happy and joyful all the time. I'm human. It just means that I know I am weak and need guidance. I know when I am worrying, sad, anxious, overwhelmed, or tempted by what I WANT to feel about this pain, that I have a place to go. A place to go that tells me what is right. And right now, it's telling me to go get my girl and squeeze her tight because she's awake from her nap. :)
I am preparing a list of things to accomplish before the Fall. If you have any ideas or suggestions, please feel free to email me or comment or facebook message me. I have recently begun researching mobility boards for spica casts, activity tables for her to use while immobile, carseats, strollers and things like that, so if you have any advice on those things also I would really appreciate it!
I read this article recently and couldn't help but relate to what this woman said. For a good while now, I haven't needed to talk about it. I haven't let it consume our daily lives. Not because I try not to, but because it really just hasn't been an issue. I say that happily. Norah so far, just truly hasn't been affected by her disability. When I say she does things normally, I mean it. Actually better than any of us would have anticipated. I watch her shuffle a soccer ball like nobody's business, shoe lift or no shoe lift. She is quite remarkably the fastest climber I know or have seen. She actually climbed the dishwasher the other day to get to her fish tank. Yes, climbed it like a miniature Spiderman. I find it pretty amazing that she has this unique physical impairment, yet our family has said it many times, "This is her skill. Her gift. She's going to be athletic." Now she's not even two...things can change, I know that. With most things she just right where she needs to be, but physically, the girl is talented. She's just so coordinated. Can you even comprehend what this means to a PFFD parent? It's like a child who can't read becoming a writer someday. It's just refreshing, beautiful and downright awesome. I say this not to boast about her. It's extremely humbling actually. I watch these kids do seriously incredible things everyday. I watch videos of children using their "new leg" for the first time, dancing, using a mobility board to get around while in a spica cast, climbing a tree with a prosthetic foot or a 4 inch shoe lift....it's just remarkable. Norah is remarkable. I tear up as I re-read that sentence and check for a spelling error. :) I tear up because it's here. How did I let so much time pass without any preparation? You fool.
I have intentionally avoided support groups, facebook pages, researching and any preparations regarding Norah's condition and future treatment. It is extremely easy to r.s.v.p. to the biggest pity party you've ever been to if you allow yourself and if you allow it to consume you. This being the "Nikki Howes Pity Party" or (insert your name here). I told myself this over and over to a fault almost. I soon started to realize sometime around March that her surgery was this year. Now that it is June, the realization has come by storm that we visit Paley in just a few weeks to talk about final details for surgery and then sometime after her 2nd birthday in September, it's here. So I thought, "Wow, maybe there is a reason all these parents are researching carseats and discussing details 1-2 years in advance." I honestly thought it was a bit excessive and part of me even thought it was slightly dramatic. (I apologize) But here we are, insert foot in mouth and mind. :) I'm trying to put all the pieces of this puzzle together now. I've learned that this comes in cycles, seasons even. It doesn't mean I never coped. It just means that I put it into a file in my brain, left it there and will now take it out and process it. I can't help but feel a bit foolish though for waiting until June to begin thinking about this.
Damn you Netflix!
With that said, I'm a mess. Just a big, sloppy, ranting, emotional mess. Not all the time. I'm not going to tip over, don't worry. I am fully capable of experiencing joy and choose it quite often in fact. :) There were TONS of times over the past year where it literally never crossed my mind. She would wear her shoes each day and it still didn't cross my mind. Lately though, we're encountering the things we knew would eventually occur. Her toes get little blisters, now that she is communicating, I hear "Owwww" alot while she points to her foot, she's beginning to protest when I reach for her brace and lifted shoes over her "regular" ones, she screams bloody murder when her feet are sweaty and she can't take her own socks off and all that girly drama that goes with a PFFD diagnosis. :) Because she has tiptoed so well over the last year, I've allowed it. She's close to not being able to do that anymore and its uncomfortable for her after a while anyway so we wear our shoes more frequently. This has prompted me to be more aware, ask more questions and make more phone calls. I think about this everyday now, multiple times per day. I HATE IT. I am not sure what to prepare for, what to ask, what to start working on...Pinterest surprisingly enough had about 4 pins relating to this. Can you believe that?! I have not even begun to process the lengthening. Honestly, I don't want to. I have zero interest in thinking about that. Right now I'm taking the "hip file" out and processing that one. How the heck do you operate on a leg that is the length of my forearm? It's just so tiny. I don't even want to know. It's like pregnancy all over again, except there isn't a book about it everywhere you turn. How do you be a good Mom and prepare and be a warrior for your kid but block out the emotional baggage that doing that brings? How will I teach her to accept it, love herself and quite frankly get over it because this is how it is, if I'm crying everytime I have to call BlueCross. I had a dream the other night that Norah was older and didn't want to go outside. She came to me and said "Mommy, I am not going anywhere because everybody stares at me." She also had a 4 FOOT lift with a fixator on her leg..kind of funny how dreams are crazy like that. Anyway, I proceeded to put on mismatched shoes. A bright pink sneaker and a brown cowboy boot and said, "Let's go. Nobody is going to look at you because they will be looking at me." She smiled and I woke up crying. I guess you can be a champion for your baby and just find a closet after they go to bed? Atleast that's my plan.
It's that time again. Shoes. UGGGGGHHHH, Shoes. I have to say, the PFFD Facebook page came through for me because after nearly 3 weeks of just trying to get ONE question answered by not only Blue Cross but Hangar Prosthetics also, I got an answer from several parents. More than several in fact. YOU GUYS ROCK. I also lucked out and walked into Payless WITH a toddler in tow and found 2 pairs of shoes on sale in less than 10 minutes. That never happens. Thanks to all our fellow PFFD friends and family and local friends and family, I did find several Shoe Cobblers (yes honey, I said it) nearby that are much less expensive. It is incredible how generous people have been, handing down shoes and offering ideas, information and support. Norah's currently sporting her 2nd cousin Zoey's old shoes, that have become a favorite so it just goes to show how one
person's "old" is another person's "new". They actually look brand new. (Thanks Lindz)
As I finish this post, I keep going back to what I said about procrastinating and feeling like a fool for just now preparing for something so big in our lives. I realize, I have prepared. I have prepared in a way that will get us through this whole thing like warriors. I have prepared spiritually. If you aren't a believer, it's okay, keep reading anyway. You owe it to Norah. :) Since Norah's birth, we found our church "home", River Run Christian Church, I found a Women's Bible Study group that has taken my heart to an entirely new level and my faith and love for the Lord has never been stronger. Truly. I had never really read the Bible before her. I studied scriptures here and there and prayed often and tried to be Christ-like but He is so much a part of my day, all day, everyday that dealing with this whole thing is entirely different. It's easier. I can be a mess right now and can cry at times during the day when I let my mind wander and know that it's alright. There is a scripture for EVERYTHING. They are all over our house. Post-its everywhere helping me and guiding me through my life. The Bible is seriously cool..I mean it's a handbook for your life. We read handbooks on fixing things around our home, why not our lives? I have let a lot of things go that pull me from my relationship with God and sought out things that draw me nearer. All of this prepares me for her treatment. It prepares me and strengthens me for the pain. There is no time for drama, no time for wasted emotions because it takes from Norah. Rich and I are stronger than ever because we have to be. Hard times bring us closer now. We need each other and lean on each other because we are weak. We seek out God because we are weak. And He is just equipping us, equipping our marriage and our family for a task that goes beyond our control. I can write everything I wrote, every complaint, every annoyance, every bit of thanks knowing where it all leads. My faith doesn't mean I'm happy and joyful all the time. I'm human. It just means that I know I am weak and need guidance. I know when I am worrying, sad, anxious, overwhelmed, or tempted by what I WANT to feel about this pain, that I have a place to go. A place to go that tells me what is right. And right now, it's telling me to go get my girl and squeeze her tight because she's awake from her nap. :)
 |
| Smart gal :) |
As always, thank you to our family and friends, PFFD families and friends and all your kids for inspiring us. It's your videos, blogs and posts that help get us through.
Blessings,
Nikki
