So here I am, home alone and kids in bed by 8. Say WHAAAAT? Guys ... I took a shower and washed my hair AND my face!! But it gets better ... I got out and put lotion on ... my legs and wait for it ... MY ARMS! I know, I'm incredulous too. Fifteen minutes of self indulgent bliss! Now I'm eating expensive German chocolate my friend gave me, drinking hot cocoa, watching a show I want and blagging to you. Yep not a typo ... Blog Bragging - Blagging. #trendsetter
Which brings me to my first thought. Scary I had a thought I know! I write my blog posts out in my head multiple times over different days and different times. I went back and forth on a title for this post and ultimately, I can't remember the other choices. No seriously though, this needed to be it. I need you all to know first how much I love you and second, I'm not blogging so you send me stuff. Ooooo ... Christie gettin harsh! Yeah. Deal with it. Your absurd generosity is killin me. You are literally killing me with kindness. You are wonderful and amazing and ridiculous ... and I hope you know that even though I don't Thank everyone the same ... I cry over every message, card, text, gift, box ... All of it. I hold off using the wonderful things you gave me because I don't want them to be wasted. I agonize over sending things back, getting more thank you cards or what would be the best and most appropriate way to express gratitude that can't be expressed. At this point what do I say??!! I'm out of adjectives. I wanted to blog about this because first of all, I use too many words for Facebook and second of all I thought it might be easier for people to get updates on our girl. I NEVER once EVER thought it would result in mountains of gifts, good thoughts, and overall out of this world generosity. Seriously I just thought maybe you'll read it and pray for us or help us once or twice with the kids. So PLEASE PLEASE PLEASE PLEASE know I am not doing this for stuff. Writing is cathartic for me. An indulgence that is as rare as a 10 minute shower. I enjoy it and I feel relieved when I'm done. I am able to get so many thoughts and emotions out in my writing and that's really all I ever wanted. I hope you know that.
Second ... Our girl. Our wonderful amazing nugget. Some of you have seen some videos and pics on Facebook and for those that haven't let me fill you in a little. It seems that she is finding her groove at therapy. The last 2 weeks she has done the best she has ever done. This week we started at home therapy through an Ohio based organization called Help Me Grow (HMG). I started off not too happy with my first couple of experiences with them. Since then, several meetings, phone calls, texts and emails and I really like our "service coordinator." She is very nice and honestly seems to like Hailey. She even said (jokingly) that she wanted to stop by on her way home just to see us. Hai's HMG PT is very nice too. And I really like her plan of action for Hai. On her fist visit she laid Hailey on her back and she proceeded to roll over. Yes ... my girl at 1 year old rolled over. I was ecstatic at the time (like a crazy person) and now as I type it out and actually process that information I'm a little teary. Just like when strangers tell me things like ... "Oh she's going to be so smart!!! Just look at her!" or "It'll get easier when they play together - they'll keep each other occupied." I just want to yell ... No. She won't. It won't be easier because they won't be able to play together for awhile. Ugh. So hard. How do you tell a stranger that your kid has brain damage?! LOL you don't! You just smile, choke down a tear and say thanks! But when Hailey does things like "YAAAAA" and claps her hands when I say yay - honestly gives me not only a smile but hope. Hope that prospects that it won't affect (Affect effect? UUUUUUGGGGGHHHH!!!!! This is the only one I flippin struggle with! Okay you know what I'm gonna use the wrong one and if it drives you crazy sorry ... it bothers me too but even after I look it up I'm still not sure.) her cognitively. Although there are still aspects of this that make developing her brain more difficult. Like the fact that when I'm home, I really don't have time to sit and interact with her like I want and should. Which scares me. But then there are times when Jay and I both SWEAR she said nigh nigh when I was getting her ready for bed. Or when we were playing just the two of us and she said dog 5 times. That gives me light. And I'm not gonna lie I love it. Other pluses for her - we tried something new at PT yesterday. Hailey drove a car HAHA!! Yeah, it's every bit as funny as it sounds. She totally loved cruising and I wish we could have done it longer!! Maybe talented Daddy might have to track down a power wheels and suit that baby up for cakes! (One of Hailey's hundreds of nicknames is Hailey Cakes, cakes for short). She also tolerated prone (tummy time) WAY better than she ever has. MAY have taken some new toys and bubbles ... but we had her laughing while on her belly!! I've never seen her like that. She has also recently started getting herself up to sitting from almost flat. I was so super proud the first 70 times I watched her do it. Even Emma gets in on the excitement! HAHA Emma told me she sat up and I didn't believe her and sure enough she had! We also had pictures taken of all three girls and Hailey looked pretty good! She wasn't too "slouchy." I don't want her to be embarrassed later if she doesn't look like Hannah.
Which brings me to the emotions - all of them. I've been doing really well lately. I think you all have "cheered" me up. That and the fact that I've been able to leave my house with out my kids sometimes!! (THANK YOU!) No matter what the reason I have been doing our thing, finding my groove and getting it done. I finally got caught up on my phone calls, have my appointments scheduled and actually feel a little ahead in some areas. Sometimes (like tonight) I'm reminded of realistic reality. She has shown me things to make me optimistic, but as the neurologist said in the beginning, he's optimistically realistic. Like in the bathtub when I try to get her to stand up so I can wash her and her legs are unforgivably stiff and her feet are crossed. On a slippery surface that's like trying to make a drumstick stand on an ice cube - difficult. So, long story longer, we need to be real in the sense that we are dealing with the brain ... an AMAZINGLY magnificent complicated thing. It can do incredible things and simultaneously it's as delicate as glass. (Although Jay would argue with me that glass is actually super strong and it's too strong which is why it breaks because it has no give ... or something like that.) But it can be broken with such little effort. And like glass, the brain can't be put back together quite the same way. It can still be functional (with glue and time) and beautiful, but never quite the same. Which still haunts me. A friend of mine who is also a twin mama, and one of those twins has a chronic and fatal disease, told me once, that thoughts and emotions will sneak up on me like a ninja in the night. Which is the truth. When I started writing this a few days ago I had been doing well. Then this weekend I broke like a record. I cried in public twice. Both times to friends, but still I was an ugly ridiculous mess. Good thing these women are super nice and would never say I was as crazy as I was. Sometimes it just comes. How I am actually sometimes embarrassed in public, thinking people will think what's wrong with that baby. (Yeah I know, I'm awful. It's not something I want, it just happens) The thoughts about the day Hailey will know she's different. About the day we have to draft an IEP. About the day when SOMEONE says ... "So if you're identical, why are you messed up and she's not?" About so many things so far down the road, sometimes it's hard for me to see the here and now.
But I will tell you ... I have some days where I honestly forget. I forget she has to wear braces at night. I forget that she needs a supination strap during the day. I forget about the tape on her back or neck or arm. I forget she's on medication now (temporarily for reflux, that I don't think she has). And we just giggle and play and I stare at her absolutely breathtakingly beautiful face and she smiles. And I smile. And we are happy.
**** As always, Thank You for being so wonderful to us. The happy tears I cry always help to remind me of God's love. I have had several people tell me this blog breaks their heart. I'm sorry. There are two things I would never want - 1. Gifts, please don't feel obligated. 2. To make anyone feel bad. I have only ever wanted to be transparent, open, honest and grateful. Just to let you know where I stand, what's new with Hailey-gator and to publicly Thank each and every one of you for being so supremely awesome. ****
Which brings me to my first thought. Scary I had a thought I know! I write my blog posts out in my head multiple times over different days and different times. I went back and forth on a title for this post and ultimately, I can't remember the other choices. No seriously though, this needed to be it. I need you all to know first how much I love you and second, I'm not blogging so you send me stuff. Ooooo ... Christie gettin harsh! Yeah. Deal with it. Your absurd generosity is killin me. You are literally killing me with kindness. You are wonderful and amazing and ridiculous ... and I hope you know that even though I don't Thank everyone the same ... I cry over every message, card, text, gift, box ... All of it. I hold off using the wonderful things you gave me because I don't want them to be wasted. I agonize over sending things back, getting more thank you cards or what would be the best and most appropriate way to express gratitude that can't be expressed. At this point what do I say??!! I'm out of adjectives. I wanted to blog about this because first of all, I use too many words for Facebook and second of all I thought it might be easier for people to get updates on our girl. I NEVER once EVER thought it would result in mountains of gifts, good thoughts, and overall out of this world generosity. Seriously I just thought maybe you'll read it and pray for us or help us once or twice with the kids. So PLEASE PLEASE PLEASE PLEASE know I am not doing this for stuff. Writing is cathartic for me. An indulgence that is as rare as a 10 minute shower. I enjoy it and I feel relieved when I'm done. I am able to get so many thoughts and emotions out in my writing and that's really all I ever wanted. I hope you know that.
Second ... Our girl. Our wonderful amazing nugget. Some of you have seen some videos and pics on Facebook and for those that haven't let me fill you in a little. It seems that she is finding her groove at therapy. The last 2 weeks she has done the best she has ever done. This week we started at home therapy through an Ohio based organization called Help Me Grow (HMG). I started off not too happy with my first couple of experiences with them. Since then, several meetings, phone calls, texts and emails and I really like our "service coordinator." She is very nice and honestly seems to like Hailey. She even said (jokingly) that she wanted to stop by on her way home just to see us. Hai's HMG PT is very nice too. And I really like her plan of action for Hai. On her fist visit she laid Hailey on her back and she proceeded to roll over. Yes ... my girl at 1 year old rolled over. I was ecstatic at the time (like a crazy person) and now as I type it out and actually process that information I'm a little teary. Just like when strangers tell me things like ... "Oh she's going to be so smart!!! Just look at her!" or "It'll get easier when they play together - they'll keep each other occupied." I just want to yell ... No. She won't. It won't be easier because they won't be able to play together for awhile. Ugh. So hard. How do you tell a stranger that your kid has brain damage?! LOL you don't! You just smile, choke down a tear and say thanks! But when Hailey does things like "YAAAAA" and claps her hands when I say yay - honestly gives me not only a smile but hope. Hope that prospects that it won't affect (Affect effect? UUUUUUGGGGGHHHH!!!!! This is the only one I flippin struggle with! Okay you know what I'm gonna use the wrong one and if it drives you crazy sorry ... it bothers me too but even after I look it up I'm still not sure.) her cognitively. Although there are still aspects of this that make developing her brain more difficult. Like the fact that when I'm home, I really don't have time to sit and interact with her like I want and should. Which scares me. But then there are times when Jay and I both SWEAR she said nigh nigh when I was getting her ready for bed. Or when we were playing just the two of us and she said dog 5 times. That gives me light. And I'm not gonna lie I love it. Other pluses for her - we tried something new at PT yesterday. Hailey drove a car HAHA!! Yeah, it's every bit as funny as it sounds. She totally loved cruising and I wish we could have done it longer!! Maybe talented Daddy might have to track down a power wheels and suit that baby up for cakes! (One of Hailey's hundreds of nicknames is Hailey Cakes, cakes for short). She also tolerated prone (tummy time) WAY better than she ever has. MAY have taken some new toys and bubbles ... but we had her laughing while on her belly!! I've never seen her like that. She has also recently started getting herself up to sitting from almost flat. I was so super proud the first 70 times I watched her do it. Even Emma gets in on the excitement! HAHA Emma told me she sat up and I didn't believe her and sure enough she had! We also had pictures taken of all three girls and Hailey looked pretty good! She wasn't too "slouchy." I don't want her to be embarrassed later if she doesn't look like Hannah.
Which brings me to the emotions - all of them. I've been doing really well lately. I think you all have "cheered" me up. That and the fact that I've been able to leave my house with out my kids sometimes!! (THANK YOU!) No matter what the reason I have been doing our thing, finding my groove and getting it done. I finally got caught up on my phone calls, have my appointments scheduled and actually feel a little ahead in some areas. Sometimes (like tonight) I'm reminded of realistic reality. She has shown me things to make me optimistic, but as the neurologist said in the beginning, he's optimistically realistic. Like in the bathtub when I try to get her to stand up so I can wash her and her legs are unforgivably stiff and her feet are crossed. On a slippery surface that's like trying to make a drumstick stand on an ice cube - difficult. So, long story longer, we need to be real in the sense that we are dealing with the brain ... an AMAZINGLY magnificent complicated thing. It can do incredible things and simultaneously it's as delicate as glass. (Although Jay would argue with me that glass is actually super strong and it's too strong which is why it breaks because it has no give ... or something like that.) But it can be broken with such little effort. And like glass, the brain can't be put back together quite the same way. It can still be functional (with glue and time) and beautiful, but never quite the same. Which still haunts me. A friend of mine who is also a twin mama, and one of those twins has a chronic and fatal disease, told me once, that thoughts and emotions will sneak up on me like a ninja in the night. Which is the truth. When I started writing this a few days ago I had been doing well. Then this weekend I broke like a record. I cried in public twice. Both times to friends, but still I was an ugly ridiculous mess. Good thing these women are super nice and would never say I was as crazy as I was. Sometimes it just comes. How I am actually sometimes embarrassed in public, thinking people will think what's wrong with that baby. (Yeah I know, I'm awful. It's not something I want, it just happens) The thoughts about the day Hailey will know she's different. About the day we have to draft an IEP. About the day when SOMEONE says ... "So if you're identical, why are you messed up and she's not?" About so many things so far down the road, sometimes it's hard for me to see the here and now.
But I will tell you ... I have some days where I honestly forget. I forget she has to wear braces at night. I forget that she needs a supination strap during the day. I forget about the tape on her back or neck or arm. I forget she's on medication now (temporarily for reflux, that I don't think she has). And we just giggle and play and I stare at her absolutely breathtakingly beautiful face and she smiles. And I smile. And we are happy.
**** As always, Thank You for being so wonderful to us. The happy tears I cry always help to remind me of God's love. I have had several people tell me this blog breaks their heart. I'm sorry. There are two things I would never want - 1. Gifts, please don't feel obligated. 2. To make anyone feel bad. I have only ever wanted to be transparent, open, honest and grateful. Just to let you know where I stand, what's new with Hailey-gator and to publicly Thank each and every one of you for being so supremely awesome. ****
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