look who is cutting all by himself (thanks to special adaptive scissors)
and can now color with one hand (using his wrist band which we use for holding eating utensils too)
YAHOOOO!!!
Now, for my ramblings:
Recently, I've had several conversations on multiple occasions with various friends about this post, Labeling. I need to make a disclaimer:
In no way, have any of you ever offended me with words you may have used about Will. And, I don't even know many of the few of you who read my blog! That post was in no way intended to make anyone feel guilty about words they may have used to describe Will. It was simply my way of explaining my random, rambling thoughts on my own journey to figure out ways to describe him for those situations when, unfortunately, I do need to have a "label." Sometimes I just have these long-winded thoughts (hard to believe, isn't it?) & I need to get them out - in fact, I have a piece of paper next to my bed which I apparently scribbled some notes on one night about this very topic. I have so struggled with figuring out which category Will fits into (or doesn't) & I just wanted to explain my struggle - give you a glimpse into my struggle & my world. I get that you too may struggle in finding a concise way to describe Will - I have urged you to share his story & his victories & the miracle that he is - to give God glory in that story - but I haven't offered you a concise "term" to use in describing Will. And I most definitely don't expect you to have it figured out when I don't! So, please, know that that post was written in an effort to explain my own struggle with knowing the right term/label to use. There are also many terms I used casually prior to being Will's mom & I never even considered how they may sound to someone who actually was or knew personally a handicapped/disabled/mentally ill/etc person. God has worked on my heart these last 2 years to change my vocabulary - to be more sensitive with my words. I hope that He is using Will's story to build a sensitivity in you too. But my post on labeling was about my personal struggle - not about yours or terms any of you may have used or not used around me! :)
On another note, I have realized in talking to my friends that I think it must be really hard to be my friend! I have a double standard with my friends & for that, I apologize. I also have no idea how to change it! I expect my friends to see Will as a miracle - to be amazed at every step he takes or toy he grabs or smile he smiles. Because those are miracles. On the other hand, I expect you to treat him normally. I expect my friends to recognize that aspects of our life are difficult & yet also to treat us like normal. How in the world do you walk that line? I apologize- I realize that I do this to you & I have no idea how to reconcile those opposing concepts.
Today, I nearly had an anxiety attack in front of Will - which I don't think I've ever done. As I left Bible study, I checked my messages & heard one from his surgery coordinator in Dallas. Poor Will - he & mommy both cried for an hour. When I asked him why he was crying, he said, "Because Mommy is crying." I've been so overwhelmed lately & am rather stressed out - booking travel, thinking about Christmas, living life, etc.
Will's surgery is currently scheduled for the morning of Dec. 22. This is absolutely not how I want to spend Christmas week. This was to be our first Christmas at home as a little family. I want to look at Christmas lights, take gifts to friends, bake cookies & cook yummy holiday food. I do not want to feed my toddler pediasure for a week instead of sugary goodness. I do not want to spend 6 hours each way driving with my toddler in holiday traffic. I do not want to fear spending Christmas Eve or even Christmas in the hospital. (We shouldn't have to but if a more emergency surgery came up, it might push ours back or if Will develops an infection or doesn't recover well, it is certainly a possibility.) Last year, I felt it on my heart that Will & I should visit a local hospital's pediatric wing on Christmas Eve with goodies for the kids- I hated that they were there on Christmas. Now I keep thinking, "oh crap" (sorry - but that is the word I keep thinking!) - what if God laid that on my heart last year so that I would have more sympathy for them & this year I get to have empathy. What if that was His way of preparing me for a hospital Christmas???
I feel like God has hurt my feelings. I know that I shouldn't make plans anymore- if anything, I should have learned by now that I am never in control. But I had a fantasy about what Christmas would be like & it does not include surgery for my little boy. Sometimes I just get so tired of our "normal." I get tired of my plans & fantasies for what my family will be like getting tossed out the window. I get tired of feeling so out of control. I get tired of feeling so conflicted- trying not be child centered & yet feeling very child centered- & feeling like I make our extended families centered around Will & his therapy/prosthetics/doctors/surgery appointments. I can't figure out how to reconcile all of that. I thought today that I desperately needed to talk/cry to a friend but I get sick of feeling like I am constantly unloading on my friends- you all have heavy issues going on in your lives too. I feel like a need to calendar my friends so that I don't always unload on the same one. God made me relational & I am so thankful & dependent on my friends but I don't want to constantly burden them with my burdens. Especially when I know this is not life or death - the surgery is more complicated due to Will's narrow/difficult airway but it's not like it is an emergency or even on a major organ. Truly, it's my fantasy of what a "normal" Christmas might be like that I am grieving the loss of today. I'm upset with God for changing my plans. Goodness, that looks silly in black & white & makes me feel petty. So, for that I apologize. But, today, this is how I'm feeling. Thanks for letting me unload of all of you!
and can now color with one hand (using his wrist band which we use for holding eating utensils too)
YAHOOOO!!!
Now, for my ramblings:
Recently, I've had several conversations on multiple occasions with various friends about this post, Labeling. I need to make a disclaimer:
In no way, have any of you ever offended me with words you may have used about Will. And, I don't even know many of the few of you who read my blog! That post was in no way intended to make anyone feel guilty about words they may have used to describe Will. It was simply my way of explaining my random, rambling thoughts on my own journey to figure out ways to describe him for those situations when, unfortunately, I do need to have a "label." Sometimes I just have these long-winded thoughts (hard to believe, isn't it?) & I need to get them out - in fact, I have a piece of paper next to my bed which I apparently scribbled some notes on one night about this very topic. I have so struggled with figuring out which category Will fits into (or doesn't) & I just wanted to explain my struggle - give you a glimpse into my struggle & my world. I get that you too may struggle in finding a concise way to describe Will - I have urged you to share his story & his victories & the miracle that he is - to give God glory in that story - but I haven't offered you a concise "term" to use in describing Will. And I most definitely don't expect you to have it figured out when I don't! So, please, know that that post was written in an effort to explain my own struggle with knowing the right term/label to use. There are also many terms I used casually prior to being Will's mom & I never even considered how they may sound to someone who actually was or knew personally a handicapped/disabled/mentally ill/etc person. God has worked on my heart these last 2 years to change my vocabulary - to be more sensitive with my words. I hope that He is using Will's story to build a sensitivity in you too. But my post on labeling was about my personal struggle - not about yours or terms any of you may have used or not used around me! :)
On another note, I have realized in talking to my friends that I think it must be really hard to be my friend! I have a double standard with my friends & for that, I apologize. I also have no idea how to change it! I expect my friends to see Will as a miracle - to be amazed at every step he takes or toy he grabs or smile he smiles. Because those are miracles. On the other hand, I expect you to treat him normally. I expect my friends to recognize that aspects of our life are difficult & yet also to treat us like normal. How in the world do you walk that line? I apologize- I realize that I do this to you & I have no idea how to reconcile those opposing concepts.
Today, I nearly had an anxiety attack in front of Will - which I don't think I've ever done. As I left Bible study, I checked my messages & heard one from his surgery coordinator in Dallas. Poor Will - he & mommy both cried for an hour. When I asked him why he was crying, he said, "Because Mommy is crying." I've been so overwhelmed lately & am rather stressed out - booking travel, thinking about Christmas, living life, etc.
Will's surgery is currently scheduled for the morning of Dec. 22. This is absolutely not how I want to spend Christmas week. This was to be our first Christmas at home as a little family. I want to look at Christmas lights, take gifts to friends, bake cookies & cook yummy holiday food. I do not want to feed my toddler pediasure for a week instead of sugary goodness. I do not want to spend 6 hours each way driving with my toddler in holiday traffic. I do not want to fear spending Christmas Eve or even Christmas in the hospital. (We shouldn't have to but if a more emergency surgery came up, it might push ours back or if Will develops an infection or doesn't recover well, it is certainly a possibility.) Last year, I felt it on my heart that Will & I should visit a local hospital's pediatric wing on Christmas Eve with goodies for the kids- I hated that they were there on Christmas. Now I keep thinking, "oh crap" (sorry - but that is the word I keep thinking!) - what if God laid that on my heart last year so that I would have more sympathy for them & this year I get to have empathy. What if that was His way of preparing me for a hospital Christmas???
I feel like God has hurt my feelings. I know that I shouldn't make plans anymore- if anything, I should have learned by now that I am never in control. But I had a fantasy about what Christmas would be like & it does not include surgery for my little boy. Sometimes I just get so tired of our "normal." I get tired of my plans & fantasies for what my family will be like getting tossed out the window. I get tired of feeling so out of control. I get tired of feeling so conflicted- trying not be child centered & yet feeling very child centered- & feeling like I make our extended families centered around Will & his therapy/prosthetics/doctors/surgery appointments. I can't figure out how to reconcile all of that. I thought today that I desperately needed to talk/cry to a friend but I get sick of feeling like I am constantly unloading on my friends- you all have heavy issues going on in your lives too. I feel like a need to calendar my friends so that I don't always unload on the same one. God made me relational & I am so thankful & dependent on my friends but I don't want to constantly burden them with my burdens. Especially when I know this is not life or death - the surgery is more complicated due to Will's narrow/difficult airway but it's not like it is an emergency or even on a major organ. Truly, it's my fantasy of what a "normal" Christmas might be like that I am grieving the loss of today. I'm upset with God for changing my plans. Goodness, that looks silly in black & white & makes me feel petty. So, for that I apologize. But, today, this is how I'm feeling. Thanks for letting me unload of all of you!
1 thoughts:
That would be super hard for sure! Thanks for sharing your heart.
Post a Comment