So we got the diagnosis Tuesday ... Since then ... I have been on one wild ride.
Since Tuesday, I have been blessed with over a week of dinners - two from out of town friends - a night of babysitting, a Maso-Massage (HOLY OH MY GOSH YOU HAVE NO IDEA!!!!!!!!!!), a BEAUTIFUL angel bracelet to remind me that I have angels with me, offers for a girls night (babysitting covered), an offer for my grocery shopping to be done for me weekly, many more offers for babysitting, I was gifted a shower the other day ... I mean a literal shower - my friend who already brought me dinner, her mom gifted me the massage and the bracelet, stayed to watch my 3 (plus her 1) so I could shower (SERIOUSLY!!!!), prayers, offers for advise, THREE COFFEES!!! (Those puppies aren't cheap and you have no idea how much I love them), sentiment, empathy ... literally the list goes on and I can't even think of everything. I have been Thankful for you making me laugh out loud by myself in Target. For making me smile that big idiotic grin on the way to my mailbox. For making me flip a lid by your offers. By totally overwhelming and enveloping me in love and mercy and grace. I have been Thankful for things that take my mind off it like my independent sales. I have been Thankful for brief moments where I forget and just see Hailey for Hailey. I am Thankful for unexpected people saying I'm praying for you ... that make me feel so loved I cry. I'm thankful for some of the best sleep I've gotten in a long long time this week. I am Thankful that people actually read my ramblings and weren't offended. I'm thankful people are understanding and empathetic. I'm thankful to be encouraged instead of the encourager. For every single one of you. I'm thankful for tears and laughter. I am Thankful for many things.
Phone calls, texts, emails, Facebooks, The Love. I love you all. I love my friends. I love my family. Out of the myriad of ridiculous emotions I've felt I have never felt 2 things ... Lonely or Unloved.
This upcoming week brings a lot of uncertainty and uneasiness. Tomorrow we have an appointment with neurology to go over Hailey's results to better understand where we are. We've been flying a plane with no coordinates. Then she starts therapy. I am most excited about that because I want them to say this is doable. I want them to say we got this. I want them to be kind, patient, understanding, helpful, insightful, creative, hopeful, passionate, prepared ... I want them to be ready for a mama who isn't and help walk me through what this road will look like. Because there is a bit that I don't know if I ever made clear. (I do that a lot) This is going to be a long battle. Years. Possibly even life. There is the haunting possibility that Hailey will be in therapy for the rest of her life. We don't know yet. But as her mom, these are the things I think about. These are the things that I am trying to prepare myself for to hear on Monday. So that when I walk in and they say it's better than my worst case scenario ... Jay can say I told you so and I will cry. Not because I was wrong ... because I'm always wrong, but because I was wrong. Yeah you can read that again, I'll give you a minute. (Insert cheesy elevator music now). I will cry because it's so much better than what I was prepared for. And if not ... then I'm ready. I'm ready to cry for my baby. My gorgeous, sweet, loving, snuggly, giggly girl.
I'm preparing for a CP diagnosis. I'm preparing for, there is no hope of cell regeneration - thus making the damage permanent. I'm preparing for, intellectual defects. I'm preparing for a lifetime of hardship and struggle. I'm preparing for my worst fears. I'm preparing for war. A battle that is not just this week or next. Or next month, or 6 months. I'm preparing for the long haul. The 3-5 days a week of appointments and tests. Specialists. I am preparing. I'm preparing my heart and my mind.
My worst fears are that Hailey can't escape this. That her body can't heal. That she will struggle in school like I did. Honestly, if you pray, pray that she will not be like me. I am working and praying that my girls will not be like me. I do not want them to suffer from self worth issues, self image, self doubt, self loathing. I do not want them to suffer intellectually and in school. One thought that will always stay with me is when I asked my teacher for help and he called me stupid. I would give myself for my girls to not have to experience that. And now, that possibility is so much higher for Hailey and I cry.
I know the gut reaction for everyone is to send me articles and offers of hope. I'm still not hopeful. You know why? Because hopes can be dashed. If I am not hopeful and go in empty, then I will not be disappointed. It can't be any worse.
I also pray, that you all are not running sprints in a marathon. The love and unconditional support we have right now is paramount. It is critical and vital and I am overwhelmed in the best possible way. But I don't want everyone to run out of steam in the first mile. I don't want to be desperate 6 months from now when I still need help. It won't be as critical and it won't be as urgent ... but friends it will still be needed. IF God sees fit, IF it is His will to heal Hai, it won't be for a long time. And we will still need you. Not necessarily for dinners and coffees all the time. But for kind words, encouragement, prayers, BABYSITTING, shoulders ... I was called into battle totally unprepared and I will need reinforcements when my resources run out. Will you be there for me? Will you save a favor for then? Will you not help now, so you can later? I have so many many offers (GRATEFUL) for this week, but loves, I will need them every week ... for a long time. Do you have the stamina to run this race with me? If not ... it's okay. I'm not a marathoner either ... shoot I'm not even a sprinter. I'm a swimmer who now has to run ... uh ... yeah ... (Okay so yeah last time I said I was drowning in the ocean and now I'm saying I'm running ... Christie seriously, pick one. If I had cats I'd be a crazy cat lady.) But seriously, I will need you. I hope you will be there.
So from the bottom of my very broken heart and the depths of my shattered soul Thank You. This is a journey that can't be traveled alone and so far, I haven't been. And for someone who is afraid of the dark ... light means everything. Thanks for being light in my darkest time.
** Side notes. Since I'm a jabber box, I will do most of my big updates on this blog. I am going to try to start incorporating humor again and space the posts out so as not to bore you. Also, I will only blog when there is something to talk about. I will make some small updates on Facebook but as always, if you need anything in the mean time, please message me directly. Thank you for reading, thank you for loving and thank you for being wonderful you. **
Since Tuesday, I have been blessed with over a week of dinners - two from out of town friends - a night of babysitting, a Maso-Massage (HOLY OH MY GOSH YOU HAVE NO IDEA!!!!!!!!!!), a BEAUTIFUL angel bracelet to remind me that I have angels with me, offers for a girls night (babysitting covered), an offer for my grocery shopping to be done for me weekly, many more offers for babysitting, I was gifted a shower the other day ... I mean a literal shower - my friend who already brought me dinner, her mom gifted me the massage and the bracelet, stayed to watch my 3 (plus her 1) so I could shower (SERIOUSLY!!!!), prayers, offers for advise, THREE COFFEES!!! (Those puppies aren't cheap and you have no idea how much I love them), sentiment, empathy ... literally the list goes on and I can't even think of everything. I have been Thankful for you making me laugh out loud by myself in Target. For making me smile that big idiotic grin on the way to my mailbox. For making me flip a lid by your offers. By totally overwhelming and enveloping me in love and mercy and grace. I have been Thankful for things that take my mind off it like my independent sales. I have been Thankful for brief moments where I forget and just see Hailey for Hailey. I am Thankful for unexpected people saying I'm praying for you ... that make me feel so loved I cry. I'm thankful for some of the best sleep I've gotten in a long long time this week. I am Thankful that people actually read my ramblings and weren't offended. I'm thankful people are understanding and empathetic. I'm thankful to be encouraged instead of the encourager. For every single one of you. I'm thankful for tears and laughter. I am Thankful for many things.
Phone calls, texts, emails, Facebooks, The Love. I love you all. I love my friends. I love my family. Out of the myriad of ridiculous emotions I've felt I have never felt 2 things ... Lonely or Unloved.
This upcoming week brings a lot of uncertainty and uneasiness. Tomorrow we have an appointment with neurology to go over Hailey's results to better understand where we are. We've been flying a plane with no coordinates. Then she starts therapy. I am most excited about that because I want them to say this is doable. I want them to say we got this. I want them to be kind, patient, understanding, helpful, insightful, creative, hopeful, passionate, prepared ... I want them to be ready for a mama who isn't and help walk me through what this road will look like. Because there is a bit that I don't know if I ever made clear. (I do that a lot) This is going to be a long battle. Years. Possibly even life. There is the haunting possibility that Hailey will be in therapy for the rest of her life. We don't know yet. But as her mom, these are the things I think about. These are the things that I am trying to prepare myself for to hear on Monday. So that when I walk in and they say it's better than my worst case scenario ... Jay can say I told you so and I will cry. Not because I was wrong ... because I'm always wrong, but because I was wrong. Yeah you can read that again, I'll give you a minute. (Insert cheesy elevator music now). I will cry because it's so much better than what I was prepared for. And if not ... then I'm ready. I'm ready to cry for my baby. My gorgeous, sweet, loving, snuggly, giggly girl.
I'm preparing for a CP diagnosis. I'm preparing for, there is no hope of cell regeneration - thus making the damage permanent. I'm preparing for, intellectual defects. I'm preparing for a lifetime of hardship and struggle. I'm preparing for my worst fears. I'm preparing for war. A battle that is not just this week or next. Or next month, or 6 months. I'm preparing for the long haul. The 3-5 days a week of appointments and tests. Specialists. I am preparing. I'm preparing my heart and my mind.
My worst fears are that Hailey can't escape this. That her body can't heal. That she will struggle in school like I did. Honestly, if you pray, pray that she will not be like me. I am working and praying that my girls will not be like me. I do not want them to suffer from self worth issues, self image, self doubt, self loathing. I do not want them to suffer intellectually and in school. One thought that will always stay with me is when I asked my teacher for help and he called me stupid. I would give myself for my girls to not have to experience that. And now, that possibility is so much higher for Hailey and I cry.
I know the gut reaction for everyone is to send me articles and offers of hope. I'm still not hopeful. You know why? Because hopes can be dashed. If I am not hopeful and go in empty, then I will not be disappointed. It can't be any worse.
I also pray, that you all are not running sprints in a marathon. The love and unconditional support we have right now is paramount. It is critical and vital and I am overwhelmed in the best possible way. But I don't want everyone to run out of steam in the first mile. I don't want to be desperate 6 months from now when I still need help. It won't be as critical and it won't be as urgent ... but friends it will still be needed. IF God sees fit, IF it is His will to heal Hai, it won't be for a long time. And we will still need you. Not necessarily for dinners and coffees all the time. But for kind words, encouragement, prayers, BABYSITTING, shoulders ... I was called into battle totally unprepared and I will need reinforcements when my resources run out. Will you be there for me? Will you save a favor for then? Will you not help now, so you can later? I have so many many offers (GRATEFUL) for this week, but loves, I will need them every week ... for a long time. Do you have the stamina to run this race with me? If not ... it's okay. I'm not a marathoner either ... shoot I'm not even a sprinter. I'm a swimmer who now has to run ... uh ... yeah ... (Okay so yeah last time I said I was drowning in the ocean and now I'm saying I'm running ... Christie seriously, pick one. If I had cats I'd be a crazy cat lady.) But seriously, I will need you. I hope you will be there.
So from the bottom of my very broken heart and the depths of my shattered soul Thank You. This is a journey that can't be traveled alone and so far, I haven't been. And for someone who is afraid of the dark ... light means everything. Thanks for being light in my darkest time.
** Side notes. Since I'm a jabber box, I will do most of my big updates on this blog. I am going to try to start incorporating humor again and space the posts out so as not to bore you. Also, I will only blog when there is something to talk about. I will make some small updates on Facebook but as always, if you need anything in the mean time, please message me directly. Thank you for reading, thank you for loving and thank you for being wonderful you. **
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