I Second That Emotion

Aren't emotions wild? They have such a wide range from unpleasant emotions to the very best feeling in the world. Anger, fear, embarrassment, frustration, worry, exhilaration, empathy, joy, excitement, happiness ... I think I covered a majority of the available emotions under the "feeling" section of your Facebook status. As tedious as they feel at times, I still can't help but think that emotions are a vital part of the human experience.

The last year has been what one might call a "slip n slide" of emotions. I have honestly felt all of the above, often on the same day. Aren't I lucky. I was just telling my husband tonight on our way home from a trip to Toledo that I care deeply. About everything. In a world where we are forebode to care what others think, I do. I do care if you think I'm annoying, absurd, obnoxious, pretentious, rude, negative, nasty, unethical, unworthy, ungrateful or anything else. I care. I care about my family. I care about my friends. I care about strangers and stray dogs. It's something I can remember from a very early time. I used to feel bad for toys ... before Toy Story made us realize that toys really do come to life and love us right back. I once went around my neighborhood with my best friend performing funeral services for various dead animals because we felt so bad for them. I'm completely full of feeling.

One of the battles I think that many women can relate to is the feeling of not being enough. There is at least one other woman in our life that has this going on but manages to still do that, while handling this and still being able to enjoy that. We see her and think, why isn't that me? What am I doing with and in my life that makes me not her? Enter in extreme doses of doubt and any feelings of self loathing and you got yourself a good ole case of comparison syndrome. A totally made up diagnosis where women feel uncharacteristically compelled to compare and ultimately judge ourselves based on others. I feel that a lot of negative peer talk is rooted in feelings of inadequacy. We are jealous of what we see and do not have therefor if we degrade we will inevitably use humor to diffuse said feelings and ultimately make ourselves think we don't care. But we do. I do.

Recently I have discovered that I often feel embarrassed about Hailey. In a world where we are to celebrate differences, but abnormal is weird. How does one have "identical" twins in which one is "normal" and one is not? It's not that I don't love her ... You obviously know that. It's just that I hate explaining to people why she isn't walking. It's embarrassing. When perfect strangers assume that she and Hannah are the very best of friends and laugh and frolic together, I actually get embarrassed to say she's special needs. Why do I get embarrassed? Oh boy you tell me. It's taken me some time to even admit to myself that that's what I was feeling, let alone be able to even fathom why. But here's my theory ... (because I'm just full of em!) I'm embarrassed because I'm frustrated I don't have answers. I can't explain why. Or that it's okay.

Rewind. Now we all know based on knowing me and previous blog posts that I'm not the brightest star in the sky. I won't pretend to be more intelligent than I am. I try. I always have. But I struggle with scholastics. Which is why I believe I have a deep rooted desire to know things. If I have questions, I get exceedingly frustrated if I can't or don't get answers. Or when things don't make sense. That is one BIG reason why I struggle with Hailey's diagnosis. There are no answers. Not one. And there never will be. *Blank Stare* I know very little about what is happening in her body and every professional that you will speak too has the same reply to every question asked: "There are too many variables." Is she mild enough? Did we intervene early enough? Do I work with her enough at home? Will she need medication? How will she respond? And on and on and on and on. These are questions that are literally impossible to answer, but must be answered in order to provide any insight into her future whatsoever. This is not an area where I strive.

A few things to know about me, since I opened that door. There are a lot of things I do well. I enjoy public speaking. I have very little fear of speaking and or making a fool of myself in front of others. I could literally write and entire post about all the preposterous things I've done predominately after 6th grade to bring humor to others. I wanted to be the funny one in the group. I enjoyed and still do making people laugh. It puts people at ease. Makes them feel better, even if it's just for a moment. And studies by science have proven that laughter significantly improves your health. It can lower blood pressure and releases endorphins and dopamine that light up the pleasure centers of the brain. A lot of truth is said in adage! Laughter usually is the very best medicine we can give ourselves. I love my kids. No one can love my kids the way I do. I care greatly for and about others, even though I never have mastered showing it. I'd like to think that I have a big heart and feel that even when unexpressed I am very compassionate. I'm also passionate nearly to a fault. I have deep rooted opinions and often am not afraid to express them!

On the flip side there are things that I struggle with. One of them is opening up on a deep level to perfect strangers in person. It's one thing to write crazy thoughts and feelings behind a keyboard and a screen. It's another thing to sit and tell someone your soul face to face without even knowing their last name. I've been asked on several occasions if I have sought a support group and this is the reason I have not and may not. It's a level of open that I'm not sure I'll ever be ready to face. Especially since it is one I would have to pursue by myself. Which brings me to my next ungift, doing things successfully alone. Everyone wants to think they are Super Hero level and some are but many aren't. It's very difficult to do a lot masterfully single-handedly. (What is that? Single handedly. All one word? Two words? Hyphen? What?) I need help. I'm not good at asking for it, although improvements have been made in this area, but I need it. I don't like not knowing. You can ask my husband, I hate surprises. I actually do want to know the end of that movie! Because I guarantee that what you describe and how I picture it in my head will be entirely different than reality. And if your spoiler is the kid dies in the end ... I don't want to see it anyway and you just saved me 2 hours of my life. Win-Win. I'm also not timely. I have taken procrastination and gone pro with it. I put things off til the very last second or sometimes never get around to it at all. Like cleaning my basement, organizing kids stuff, or writing several hundred Thank Yous owed. (OY!)

Which is why I get embarrassed. I'm imperfect and unknowing. So far I have only encountered one "Why?" in the wild and it was from a child so I could simply and easily answer with only a slight eye misting. The day an adult asks me what happened, I may run to the nearest hole and hide. Maybe forever, I don't really know. Because I don't know. I don't know how it happened and I don't know why it happened. It just did. I recently talked to a long time friend of mine who is a very practical and pragmatic MD. I'm so proud of her. You have no idea how hard she has worked the majority of her life to become a doctor to help people. It amazes me. But anyway, I was asking questions hoping that she could give me some outside perspective maybe a little more objectively. She ultimately told me that I need to come to grips with the fact that I will most likely never know. And that she hoped I could come to peace with it. I truthfully told her I don't think I ever will be at peace. Oh looky there ... another unknown! HA! But it is an unsettling feeling - unknown. Mystery. Clueless. It's a dark place I often find my mind wandering down. The slippery slope of what-if worry. But I do hope and think that someday I can accept it. There is a difference to me between not caring and accepting. You can accept something you don't like, but you can't not care about something you do care about. Okay maybe that sounded better in my head. (Feel free to cringe deeply about my double negative there too grammar police!) But I'm leaving it because it is the truth. I will never feel peace about Hailey having CP - I don't think. It sucks. But I hope that at some point I can accept it and proceed with fervor instead of tears. I'm not there yet, still have a couple more boxes of tissues to plow through and maybe a few more blog posts, but I think I can reach acceptance. Someday.

The last thing you may not know about me is I'm not a "good girl" and what I mean by that is I don't or haven't done all the things girly girls do. When I picked out my wedding dress it was; "Yeah I love this one, I'm getting it." Not "This is it!! This is the ONE!" I  wasn't nervous on my wedding day ... I was Monica Gellar all the way ... "I'M GETTING MARRIED TODAY!" I don't Pinterest. Like, do not have Pinterest. At all. No account. It's just not who I am. BUT. I did know I was pregnant before I took the test both times. I did know Hailey was special needs at 3 months old. How? I have absolutely no idea. But I did. (Kinda like how I knew LeBron was coming back to Cleveland when he donated all that money to Ohio State. #Ploy) And with that, I know that I will never know God's plan for this while on earth. YUCK. Hate saying that as much as I hate saying Cerebral Palsy. Bleh. I don't get to know gosh darn it! Which is like, globally unfair! Totally ... Okay Christie no one else has seen Clueless in the last 10 years, they will not get that reference you sleep deprived ding dong. I told that to someone this weekend and they said "well you don't know that." But I do. I'll find out His plan when and if I make it to Heaven, but not while I'm here. It stinks, but I hope that at some point I can accept that too. I know there is a plan for this, I just don't ever get to have the privilege of being on that memo. Don't think I'm being a negative Nancy either. It's not negative if that's the way it is.

Finally the best part. Well, besides the end of this post. Two weeks ago Hailey's Help Me Grow (Ohio based at home therapy resource) administered a Batelle test for Hailey for reevaluation. It's a standard test which demonstrates various skills and or abilities that assess need for intervention. Hope you can stick with me here, it's a lot of numbers, but it's REALLY good. The test has 5 areas: Adaptive skills, Personal/Social skills, Cognitive skills, Communication skills (Which they divide into Receptive and Expressive communication) and Motor skills (Also divided into Fine and Gross motor skills). In the first 3 categories you need a 77 or lower to show a need for intervention. The last 2 (Communication and Motor) you need a 5 or lower. Hailey will continue therapy based solely on her diagnosis, but the test is mandatory. I asked her PT how her scores were based on average kids and here are the results; Adaptive Hailey scored a 95 (37th percentile, but her PT said that is a bit skewed think of it more between 25-75% so close to average), Pers/Soc 118, Cognitive 113 - both around the 80th percentile. She's vastly above average in cognition! WHAT?! Receptive Comm was a 12 (75th percentile), Expressive was a 14 (91st percentile) Hailey can tell us what and how she feels ... hmmmm wonder where she gets that?! Fine motor was a 13 (84th percentile) and Gross motor was a 1 (Less than 1%). This is due to the fact that she cannot pull to stand independently, crawl, walk, stand etc. So I was neither surprised nor upset about the last one. So what does all that mean? Well ... it means that if it weren't for her diagnosis, Hailey would only show a need for intervention in 1 area. It means that except for 2 areas (one with exception) she is WELL above average. It means Hailey is smart. It means she's not incapable. It means my girl is AWESOME. And that emotion right there, that's one they haven't named yet. I sincerely hope that this is a road we can stay on. Because that doesn't embarrass me. I wouldn't be embarrassed to tell people that with CP Hailey is brilliant. With damage to her brain, she's smart. So so smart and I have the test scores to prove it! I think that should be a bumper sticker.

When the day is done, while I'm not winning awards, or moving mountains, or saving the world like so many people I know in my life, I'd like to think I'm doing the very best I can with what I've got. I am damaged and I am flawed and I fail and sometimes I even stand tall. But I try. I still try. When I don't want to, when I don't like to, when I know it will end in failure, I try. Because it's all I can do. I was dealt two wild cards. Twins. And special needs. Woah mama. Not planned and unprepared. I'm doing what I can and caring all the way. Because if I didn't care, I wouldn't try. And if I didn't try I would never get to move forward. Trudge ahead. However slow and sloppy it may be. I have many dark days. On those days, I'm still trying, it's just not as successful. Failure and I are on a first name basis. But yet I have not given up. And I'd kinda like to give myself a tiny little pat on the back. For all my pity parties and self doubt, for my constant comparison trap, for my incessant feelings of inadequacy that I fight like hell against every day, I'd like to think that trying my best isn't so bad. My life isn't ideal. Not how I'd like it to be or how I envisioned, but still here we are. Trying. And it may not be enough, but maybe it is.

Love you so much.

Overwhelmed

"I know you can be overwhelmed and you can be underwhelmed, but can you ever just be whelmed?"

Classic quote from Mean Girls. Yes, I got out of bed at 12:30 am to quote Mean Girls. No, not really. I was in bed doing what I do best, blogging in my head. I haven't done it in awhile, but trust me, I've made plenty of posts in my head. Now if only Google or Apple or whomever can give me the technology to publish my brain posts ... we'd be all set! Well you'd be screwed, but I'd be happy!

Lately things have just become overwhelming. A few months ago we lost Brutus. He had been dealing with some depression issues and eating objects as a way to lash out. He ate a felt scarf approximately 6 feet in length and there was nothing that could be done, we had to put him down. As bad as he had been, I still cry sometimes. He was a sweet dog and had the cutest face and I do miss him. While at the vet, my mom had called and left me a voicemail to call her back as soon as I got home. I did. She informed me that if I wanted to say goodbye to my grandmother I better get back to Toledo right quick. I did. The day after I returned to home for Hailey's therapy, my grandmother passed away. So Saturday we put Brutus down, Wednesday my grandmother went home. Hard times.

So many other things have happened since that period. Jay made the decision to go on another mission trip to Ecuador to see our sponsor child and help with relief efforts from a recent earthquake that did significant damage to a church our church helped plant. Say that 10 times fast. He has gone once before and it is hard. I worry about him being in a third world country. I worry about the multiple flights and questionable modes of transportation he has to use to get to the certain area of Ecuador. What if he doesn't come back? I mean easy for you to say he'll be fine, but these are the things that plague me. All while trying to be supportive of the fact that he is going to help others. It is a good and right and noble thing and it sucks like crazy for me. You'd think you would be unapologetically proud and excited that your spouse is doing these things. But really I feel scared, isolated and very much alone. I do my best, I know it needs to be done, but it hurts in the mean time.

But here's what's really taking over my brain lately. And what I want you most to know. The ridiculous and heavy burden of being overwhelmed. As parents we would do anything for our children and last week I told God after laying Hailey down for a nap that if He would guarantee her to be healed right now I would die for that. If she were right now healed, I'm ready - take me. This sucks. Sure of course there are good moments, times, days, heck even weeks! We celebrate victories, milestones, achievements - but all the while it still sucks. It doesn't ever stop sucking. To quote the great Homer Simpson - "It's the suckiest suck that ever sucked." Can I just tell you I cry all the time. Like at least once a week. Why? Get over it. Seriously what is wrong with me? My mom gets mad at me because she says Hailey is going to get a complex that she makes me sad. Which is the exact opposite of truth. If you know her you know that Hailey has the single greatest belly laugh of all time. That's not even bias it's fact. She makes me smile daily. The reason I cry is because I HATE THIS. I hate CP I hate the struggle I hate the therapy, appointments, equipment. Here is a list of all the items I currently have that are recommended for use either daily, weekly or as often as possible:

• Spio (Spee-Oh) vest, which she wears daily
• We just got AFO's (Ankle/Foot Orthosis) Monday that she needs to wear all day every day
• Long sleeve Spio shirt
• Spio long pants
• Knee immobilizers
• Bamboo splints for her elbows - not made out of real bamboo that is the name of the company that makes them
• KT or Kensiotape for scapula, shoulder and arm - also abdomen
• Soft split for elbow
• Wrist and hand guards that she used to have to wear at night, but I stopped awhile ago and recently got the okay for.
• Supinator strap for arm
• Koban tape - basically self adhesive wrap that is used as part of her therapy
• Crawl trainer
• Gait trainer
• And frozen car

Yeah, I'm supposed to use most of that stuff every day. With more on the way. Plus now she has glasses. Did I forget to mention that Hailey is farsighted with astigmastism? Oh seriously how can you not laugh out loud right now?! And I'm not to feel guilty because it is impossible for me to get all she needs done done. Impossible. If I get on the floor to work with her I have Emma there making everyone laugh or scream, Hannah non stop crawling all over me ... It's a nightmare. But I get left with the sinking feeling that if I don't try harder, her outcome may be delayed because of it. It might take her years longer to get out of her braces, she may have to use a walker for life because I couldn't find the extra 30 minutes she needs. The pressure for me is astronomical.

Sure of course we muddle through with plenty of trips to Target and Starbucks for people to marvel at my ability to leave the house with more than one super cute child and for me to forget for one second that this is so awful sometimes I can't breathe. Sometimes I lie in bed and sob uncontrollably. I try to be happy, I try to be funny, I do my best to relish and celebrate the wins ... but if I'm honest with you - which I only ever am ... every day stinks. It is hard, it is overwhelming and often feels unbearable.

Hai is so smart.Which of course I love. Her vocabulary is outstanding (Bubbles, Mommy, Daddy, Ouch, Uh uh, No, Ow among others I forget - and she can sign all done, more and please.) She knows what's going on. She knows that she isn't supposed to be like this. She sees what Emma and Hannah do and gets so frustrated she can't. When I'm making dinner and the girls are running around Hailey is just crying the entire time wanting me to pick her up so she is not left on the floor alone. All day my baby sits because I'm trying to do it all and I can't. I do incorporate things here and there for fleeting moments. But sometimes I have to just let her be and it is the worst.

My dad was one of the officials at the first Special Olympics - always thought that was pretty neat. And he often says when he sees special needs people - Such Joy!! And so many of them do exhibit immense amounts of envious joy. I wish I could be as happy as my distant cousin Sara is. Her joy is so abundant I can almost feel it through the phone when she calls me from Tennessee. But what he doesn't get to see is every Tuesday and Thursday at outpatient therapy, the screams of agony and frustration. Not just from Hailey but from dozens of kids. Working so hard and struggling so greatly. Do you have any idea what it feels like to be sitting in front of your baby that is crying so hard you think she's going to throw up and have to wait for the therapist to tell you it's okay to pick them up? Do you know what that does to not only your heart but your mind?

As a swim lesson instructor I know bonds and trust need to be established. Boarders, boundaries etc. But it is excruciating nevertheless. Don't get me wrong it's not that I'm forbidden. It's not some prison camp where they torture her. But limits must be pushed. Many children do things in anger that they don't normally do. Not my stubborn Hailey. And so I sit and I listen to her scream at the top of her lungs at something she refuses to do as tears pour down her face and I wait until I can comfort her. And then I cry because this is her life. Special Needs. Forever. Stamped, labeled, always her.

I am getting so tired of seeing videos on Facebook that I once awwwwwed and adored. Children with CP taking their first steps at their High School graduation, running the bases at t-ball or doing a triathalon. You'd think it would bring me joy and hope and all those feel good things. But it doesn't. It makes me angry. This is it. That's my kid now. Awwww poor thing. Awwww good for her! Awwww how sweet. You don't say those things if they were normal kids doing those things. I shudder at the fact that for the rest of her life people will inadvertantly and totally with the best intentions look at her as something to feel sorry for. That every day things that are really hard for her, is something to suddenly be heartwarming. And to be honest, I know I'm mean and cold and callus - I know, but I just don't want my kid to be that neat little special needs kid. Good for her. I want her to be Hailey with nothing. Just normal beautiful, sweet Hailey who hates to snuggle.

So many babies are being born all around me. And anyone who knows me knows I LOVE babies ... but they are are fine and normal and healthy. I know 3 families who have special needs kids in them. Three. Which makes me wonder just where I went wrong. What did I do to make us different. Why are so many people able to have perfect and healthy babies and I'm over here blogging at midnight because I don't know what else to do with the weight.

And so I cathartically pour out my emotions in the hopes that now that I've gone through a whole box of tissues and aired my grievances I may be able to sleep. I do apologize that this isn't what most people want to hear. That this isn't the good stuff, the exciting things. But this blog for me, is much more than just telling you what Hai is doing. For me it's letting you know what's going on. And right now, this is what's going on. This road has been so long already, and I have a lifetime to go.

That being said, I know most of you read this to know how she's doing which is well. She is making progress often. Always more to do, but overall, she is my gorgeous little bespectacled giggle girl.

Thanks for your continued thoughts and prayers. I love you so much sometimes I can't take it. You are thoughtful, you are kind, you are generous, you are caring, you are giving and most of all ... You care about my girl. I just can't even begin to tell you how thankful for that I am. Thank you for loving my love. Thank You.

Kindness Killed The Christie

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. ****