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. ****

It Wasn't Supposed To Be Like This

Well it's been awhile and here we are again. As I suspect will happen from time to time I have, unlike my cyborg husband, emotions. This last week they definitely got the better of me. Try as I might I couldn't keep those wet balls in my eyes. I was a snotty, teary mess 60% of this past week. And goody for you! Now you get to hear about it ... er rather read ... whatever you know what I'm saying!

So this week we got to meet another specialist. The Physiatrist. I can't explain technically what he does, but he is essentially a pediatric specialist that focuses on movement (like kinesiology). He is a doctor and sees many kids like Hailey. So the good news ... He said "you know with kids with this condition you wonder will they walk? Won't they walk? -- Record scratch ... pause the quotes for a second ... Jay and I hadn't realized not walking was even on the table as a possibility. Last appointment with neurology was Hailey may grow up to be clumsy ... but she didn't need brain damage for that ... she could've just inherited it from me ... Sir Gimps-alot. So ... that's news. Resume quote ... -- But in her case she will walk. Now whether it's with braces? I don't know? Whether it's with a walker? I don't know. But she will walk." Okay, so trying to be grateful, I'm crying to find out my baby may not walk (remember NOTHING is certain with this damage). He also said that most often kids with this condition fall in the lower end of normal range for IQ. He is extremely confident she will fall in the normal range. Praise God for that too. It saddens me to think that the possibility of her being intellectually superior is much less likely and not probable. That's a weird pill to swallow. But we went to OT today and her therapist said "I'm glad you brought that up," as I was filling her in on our appointment, she said "she is VERY aware of what's going on around her and object permanence ..." Everyone we talk to believes that cognitively Hailey is right there. That is definitely hopeful ... but they all also say that cautiously. It's a "good sign." When I asked the Physiatrist what he meant by she may need a walker - is that a short term thing, for life? What? He said it could be for life ... he doesn't know. Youch. Yes she will walk ... I am grateful ... I am sad that it may only come with the help of a walker for the rest of her life. Again ... this is easy for you ... you just read what I tell you and say oh yay!! Good for her ... For me it's my life. My baby. Permanence. I'm happy ... but crying at the same time. Her hamstrings appear to be a little short ... which can happen with "normal babies" so it's not "telling" but he put in an order for leg braces for her too. We don't have them yet, but Hailey now needs 2 wrist/hand braces, 2 leg braces, KT tape, and another wrap for her arm that I can't think of the name of right now - but it helps to "Supinate her arm and hand." (Supinate means to turn it from palm down to palm up.) All for one baby that doesn't even weight 17 pounds yet.

PT was hard last week as her therapist was sketchy on the doctor's opinion of walking. Talk about making your heart sink. She never contradicted him and after a few moments directed her energy into saying "well ... I just get nervous when doctors put a time frame on walking." Which I never said he did. I suspect this change of direction came after wetness appeared in my eyes to help me feel better. Long story short ... I'm now more confused than ever because I keep getting told one thing only to be told another by someone else. CP (which she hasn't officially be diagnosed with, but everyone is treating her as such) is supposed to be "stagnate," which means it won't get any worse ... come to find out that when kids like Hailey try to walk the tone in their legs INCREASES (which means gets worse) and causes walking to be much harder. Which is part of the reason some kids don't walk. UGH!!!

Honestly that is one of the hardest parts about this process ... what is going on ... can anyone say anything with certainty?? NO. The answer is no. If I have questions I pretty much can't answers and if I do they aren't straightforward and are confusing. I am not an intellectually superior person. Yeah go ahead and yell at me like you all do each week that I'm too hard on myself ... that's fine. The grades my entire life would beg to differ with you. I'm not hard on myself when it's the truth. I've only ever been mediocre scholastically which is why I cry for Hailey because I don't want that struggle for her. But one of my biggest pet peeves is being confused. I hate it. So much. And this process is one big confusion after another. One doctor says this, another specialist says that and everyone says lets wait n see. Well ask my husband I'm equal parts impatient and stubborn. I want my answer and I want it now. I don't want to wait 6 months or a year or 2 years.

Now for the good stuff. Still being blessed ... You guys! How can I Thank everyone enough? I'm baffled and stunned and humbled and grateful. Every time I think we are heading into loneliness ally someone comes around and does something that proves 2 things; 1. That God is keeping His promise and 2. I know the best people in the world. Weather it's not 1 but 2 random acts of kindness in Target or a well timed text or the best card I've gotten in a few weeks. I'm not alone. I said it earlier and I get to say it again. There are 2 things I've never felt this whole time; unloved or alone. You won't let me. And for that ... that is pry the greatest gift of all. Because ... this wasn't how it was supposed to be.

First of all ... I was supposed to have all boys. I know boys, they're easy and I can do boys. I had all girls. What do you do with a girl?? Second, I was supposed to only have 1 baby this last pregnancy. As most of you know when I was pregnant I went in for my 9 week standard OB appointment and congratulatory doctor visit. The in office ultrasound did it's job and showed 1 lil bean in there. Flash forward to my 18 week gender scan ultrasound and bada-bing TWINS. IDENTICAL GIRL TWINS. Proud of  Jay for not passing out or throwing up and my beautiful sister-in-law for "calling it" when I was only 10 weeks. Yes I'm not joking she told me it could be twins ... but I guess a fellow mother of identical twin girls would know!! Holy moly ... well okay that's great! But I was supposed to deliver full term naturally and my girls were taken at 35 weeks via emergency c-section. I was supposed to exclusively breast feed and me being stupid I unknowingly ruined my milk supply and have had to supplement with formula. Everything I had planned has completely gone out the window. Everything. Which only proves to the old adage "If you want to make God laugh tell Him your plans!" Oh boy ... in my case I had God in stitches!! But my pride and my feelings have been wrecked. Despite what you think you also told me I'm entitled to my feelings and I have felt like a massive failure these past 12 months. Just because you think I'm doing a "good job" doesn't necessarily make it so. I'm keeping them alive but that's about it. I'm struggling. Greatly. And I'm doing my best ... but my best doesn't feel good enough. I feel like a failure that Hailey even HAS PVL (My kids were supposed to be normal and healthy you know), I feel guilty we had to buy expensive formula (I hate it, it's disgusting and I'm ashamed I had to give it to them), I feel like crap that my house is filthy, Emma is neglected and I forget everything. Tell me what you want, but you can't take my feelings. And I feel like a failure. Because it wasn't supposed to be like this.

At the end of the day, the very very long days, I look back and say we made it. Each day we make it. And I hope that some day my girls will tell me it was okay. That they knew I loved them. That even when I take my stress out on them (unintentionally) or don't have much time to just sit with them that they know I would give my life for them. That I would give every part of myself for them. I hope they know that I love them more than anything.

Hailey had her best day of therapy ever today. Only one huge tantrum then after that it was good steps and hard work. I've been excited to see her improve, even if it isn't as fast as apparently she is supposed to be improving. I'm thankful her therapist is human and talks to me like a hurt mom. That she thinks about what I say to her AFTER our sessions (Emma told me last week that she loves Hannah better ...) that she came up with ways for Emma to play with Hailey to help her be more involved. I'm thankful that more likely than not Hailey will walk in her life. I'm thankful for friends who haven't forgotten me and people willing to go out of their way to help. I'm thankful for a loving husband who has been more than supportive. Who is willing to do whatever it takes to help our Hailey girl without blinking an eye. Who is willing to sacrifice what he wants for what is best. For helping me when he can and for telling me he understands I'm doing my best. Even when I ruin a totally easy recipe. I'm thankful for prayers and a God who loves me despite my never ending faults. He is good.

Thanks for reading, thanks for helping, thanks for caring. It means the world. And I can't wait to tell Hailey when she's older, just how many people love her.

Bits n Pieces

We are on week 3 of therapy (Due to her OT being out and my stupidity we had to therapy last week) It's going well. Her therapist said she's doing well. It's hard. I can tell it's hard for her which then makes it hard for me. I hate hearing the therapist say that things are so hard for her that are not hard things. I hate hearing a professional tell me we need to get her moving because so much cognitive development is in movement. (Not starting an argument about who what where why how ... just stating a feeling.) I hate FEELING like I failed her because of how far behind she is. Like I should have known and been doing more to help her. (No, no one has said that to me ... again it's just how I feel) Some hard feelings for me lately. Did the hard thing and celebrated when she did a small thing. Like putting her hand down to keep herself from falling over. That, my friends, is a natural human instinct, but Hailey doesn't have it. She has to learn it. So, when she did it today, we had to celebrate. I hate that. Pry will for awhile. But I am doing it. I hate the fact that she is so slouched forward and it sounds and seems like my fault that I wasn't positioning her correctly all this time. I am so frustrated. I hate this.

I got a call the other week from the pediatrician's office to let me know they put in an order for us to see the Physiatrist. That's the word. One of my friends got it lol. Called to schedule ... January 11. Guess they're busy. But this appointment will address Hailey's spasticity or stiffness in her body. It manifests itself in different ways. I talked about it in my last blog post if you need to read more, but basically she has to concentrate so hard to do one thing that the rest of her body gets completely stiff. This can be bad as I learned yesterday because as Hailey is growing if her muscles don't stretch they won't grow. Her bones will and the muscles won't follow and could leave her hand and arm permanently limited. That. Scares. Me. I was able to hold it together in PT yesterday, but I was definitely crying on the inside. As a mom you kinda feel like you should know this. Like I should have been stretching her this whole time. Which if I'm totally honest I did try. Not how they are teaching me, but I did other things. I guess I will keep my fingers crossed I'm doing enough and it's not too late.

Another frustrating venture I'm on is Help Me Grow. I can't begin to tell you how many people have told me to contact them. Including the coordinator who met with me in the step down unit at the hospital not long after the dinks were born. (I call the twins Twinkidinks, Dinks for short) So I already knew of them and just honestly I haven't wanted to call. I had to ask specifically "help me with what? How are they a resource?" Because I couldn't understand what they were going to do for me. Well, broke down and called. If for nothing else, I hope they can help me navigate requesting funds and filling out paper work I can't find and won't pretend to understand. Hailey has a clinical diagnosis ... and yet ... they have to come out and do their OWN assessment to determine if Hailey needs help. What? Is that not the biggest waste of everyone's time and resources?? She has been diagnosed. By a doctor. A specialist. That bears no weight?? Nope. Well I was told I'd get a call back same day ... it's been around a week and nothing. Ugh ... no wonder our neurologist said they were stretched thin and may not be able to help. I had to call my original person back today (that is amazing in and of itself that I remembered) and say yeah I never got called.  So hoping this works out and turns out they are as wonderful as 500 people have told me they are. So far ... me 1 HMG 0.

The other place I struggle with is my Emma. She is so bright and funny and has so much energy. Honestly, I can't even start to tell you how much stuff I need to do in a day and trying to balance it all is awful. Emma does not get the time or attention she deserves from me. Nor the patience. I struggle every day trying to remind myself to give her time and to enjoy it. It shouldn't just be obligatory but wanted. That's hard when my house is a disaster (yes still) and my time is so limited. That and the fact that I'm averaging 3-4 hours a sleep at night.

Now for the good. Hailey is doing well. I think. I continue to see improvements. As everyone stated and I already knew, we have some days that are better than others. Sometimes she sits and plays so well, it's hard to tell. Other times she throws herself back in a fit and screams. But overall ... we're getting there. Her OT even noticed that she is already eating better! (She had to learn how to chew) She basically was showing off at OT yesterday for a new therapist that was there. I don't think the new woman believed Breann (Hailey's OT) or I that the things we said were problems were actual problems because Hailey did everything like a BOSS. But again ... still so much that needs addressed.

I turn 31 tomorrow. HAHA I'm old ... and I'm not just saying in years. I have the soul of a 98 year old. Kids today are crazy with their sayings and clothes ... I don't even know what's goin on just as long as you stay off the lawn!!! But seriously, some of my friends got together and bought me dinner at Cheesecake Factory on Monday. That's not cheap guys. I was under the impression I was going out WITH friends, not that they were taking ME out. They even bought me a drink AND Dessert!!! WHAAAAAT?! Okay then to make my ticker stop they got me GIFTS ... STOP IT! Just STOP it! AND ... cherry on top ... they went around the table and gave me words of encouragement and kindness. Things I don't fully believe to be true about myself, but they do. I cried. I cried because I've never had that before. I cried because I haven't really ever "celebrated" my Birthday since I turned 21. I've never had a dessert plate that says Happy Birthday on it with chocolate drizzle. And I have never seen such ridiculous generosity for someone like me. Whether or not you think I'm deserving is besides the point. I don't feel it and that makes me so much more in awe and grateful. From the bottom of my heart and the depths of my soul I will never forget that night and I will forever be grateful. (Did I mention my friend who put it together made me a BLOCK O CAKE?!?!?!?!?!!!!!! She MADE ME an Ohio State CAKE! #ItsNeverGettingEaten) Plus I have already gotten gifts in the mail ... I'm just ... sigh ... so overwhelmed. In the best possible way but honestly ... God loves me too much. I begged Him not to leave me, but he's pouring down blessings like Noah's comin. I expect it is to help prepare me for the dark times that lie ahead. For me to keep these things in my heart to recall when things are bad.

Thank you Lord for loving me as only You can love. Beyond words. beyond measure and certainly beyond worth. I do not deserve You or Your gifts Lord ... but that does not mean I am not forever grateful. Your mercy and grace surround me Lord and fill my heart to overflowing. I cry tears of joy and thanksgiving lately. Thank you God for keeping Your promise to never leave me. To hold me and comfort me in times of sadness. For being bigger than anything I face here. For being my firm foundation. For being the prodigal father waiting patiently with arms wide whenever I need to come running back. For loving me the same whether I mess up or do well. For being all things I need at all times. Thank you for putting people in my life who are greater than I. The smartest and greatest people in history always surrounded themselves with people smarter and better to help better themselves. You are only as good as those who surround you. And I must be pretty dang good. Amen. 

Updates are Fun

So I told you I'd try to space things out so that you don't get bogged down with blogs ... LOL. So now that I have had time to gather information, here it is ...

First of all ... I put this in God's hands months ago before the doctors, tests and diagnosis'. I've know in my heart Hailey was special needs since she was 3 months. And I cried and prayed and told her I loved her. I begged God to keep His promise to me and never leave me. BEGGED. And I think this last week was His firm slap to the face reminder I need that He is here. He is all around me just like I asked and He promised.

First of all ... every time I turn on the radio (95.5 The Fish here in Cleveland) I have heard a myriad of songs (of course none of which I can remember right now) that I have praised with for so long but now take on a whole new meaning. Songs that remind me that with God, "Nothing is impossible." And for me, that is HUGE. I know I was a debbie downer in some of my posts, but I was just trying to steal my heart. I couldn't get hurt any more and if I was blank, I couldn't be hurt. BUT ... That being said ... we had a week of ... well ... joy.

First things first. We had another appointment with Neurology last Monday. It wasn't with our original doctor ... (Insert supreme frustration that has nothing to do with anything relevant ... just really irritated about that) ... but I still liked him. He was able to give me information I could understand and re-instill some hope. It was a long appointment ... so I'm gonna give you the cliffs notes. Basically what he said was "and MRI is just a picture. It just shows us that there is something there. It doesn't tell us anything." Huh ... okay, I'm with you, continue doctor. "What we really look at is head circumference." Which makes sense given the fact that they have measured Hai's head about 8 times. He then had the resident pull up her charts and her head circumference is around or above average size for her age range. Okay what does that have to do with anything? I'll tell you! Stop getting ahead of me ... Sheesh! So he said "the brain grows, it keeps growing no matter what else is going on." Then he inferred that if it isn't, that's what they look for and there are or could be additional problems. Hailey's head is growing, which means her brain is growing. Which is good. So good. Her soft spot is still open which means there is still room for more growth. Good news. Great news. He then compared her head chart to her weight chart (which both she and Hannah are barely on the curve for weight) and said "See ... look where she is for weight and where her head is." Let me tell you since you can't see ... BIG difference. He went on to say that the we are born with too many neurons in our brains. All of us. And at a certain point, the brain says, I'm going to cut what I don't need. So our natural brain function is to prune what it doesn't need or isn't using. So in Hailey's case, we don't need to panic because her brain should (and most likely will) compensate for the damage. Other parts of her brain will take over to do what the damaged part can't. A friend of mine shared her birth story with me (which I had no idea) and told me the same thing. She had some damage but the other parts of her brain compensated and she is a totally functioning adult and mother!! Great testimony for me. Because I had no idea. The Neuro also said that this is just the short term. He said look at when we're babies, we can basically do nothing right? Then when we turn 2, look at all the things we can do! We are basically tiny humans at that point. Okay now don't get argumenty with me. Hear what he is trying to say, not that babies aren't humans, but a 2 year old can do essentially everything and a baby can't. His point, there is so much time for things to happen. When she turns 2 we will look at things and see then. For those who don't know, Hailey is 10 months, so that is a little over a year. This information gave me breath again that I can narrow my focus from what am I going to do when she's 7, to, okay let's get her stronger and go from there. We will have re-evaluations every 3 months to see where she is.

Now, I know what you're thinking ... Christie we've all been telling you one step at a time this whole time!! Why didn't you listen? And well ... the only thing I can say is I heard you ... but the brain and heart are two very separate things. My brain knew that ... but my heart couldn't get over the extreme possibility this would be our life. So now's where I say, you were right. There. Feel better? Good.

At the end of the day, he told us the best news we could have hoped for. Nothing. NOTHING is certain or guaranteed with the brain, so things can change, BUT ... at this point, chances are slim that this will affect her cognitive process. Which is what I have so needed to hear. Based on the fact that Hailey is present in situations, she's reactive, talkative, engaging, plays etc. That looks promising. Also based on what I said above, it will most likely not affect her long term. There is a real possibility she could need devises to help her walk or that she may be clumsy as she gets older ... but really ... she would probably get that from her mother anyway ... so the odds are forever NOT in her favor there ... Sorry Hai Hai!! Least you got your daddy's eyes ... She does stand a chance of being able to catch up. And this I will cling to.

Which brings me to Therapy. Whew. Had our second OT appointment today where we went over her assessment. Hailey is not bad. Her words, not mine. She is in the 16% percentile for dexterity for babies her age. Which apparently isn't the worst. So okay. But we do have a lot to do. She is already markedly sitting up better and using her right hand more. Phew!! What I've been doing for the last 3 months didn't hurt her! HA! We started using Kinesio tape today to help with her hand which I am super excited about. I LOVE that there are different "out there" options being utilized to help her. I am an ALL IN mom. If it helps, lets do it. Or heck, lets try it! We also are working on stretching her arm and hand out. The OT's goals for her are to get her weigh bearing on her arms (mostly right), take a closer look at her eating, get the right hand more utilized and a few other things. She also advised me to see a Physio ... hmmmm ... what's he called? Huh. Yeah. Got nothin. I even tried googling it ... came up empty. And don't say Physiologist because that is NOT it. It is something I've never heard of before. But he is a doctor that will look at how Hailey moves and make some recommendations on what she may or may not need. (i.e. chiropractor is not helping, she needs meds for her spasticity)  Yeah you read that right ... hardest part about today was talking about Hailey's spasticity. That means her stiffness. *Cue mommy tears* It's much harder for Hailey to do what other babies can. So much harder to sit, reach, play etc. So in order for her to concentrate on what she wants, other limbs become rigid and stiff. Like if you were to focus all your energy on staying sitting, your legs would be stiff and your arms just to focus your strength and energy on your core to keep you stable. That is my Hailey's struggle right now. Whooooo ... tearin up here. This is the hardest part of this journey, celebrating things that shouldn't need to be celebrated. Watching and hearing her cry because she is so spastic and trying but can't sit or move the way she wants. But I digress ... kinda. Her OT and PT discussed last week that her stiffness is pretty bad. And that she may need medication for it. Small heartbreak. I don't want her on medication. But if it helps, it must be done. So that is some news that I will have to carry, consider and prepare for. And yet ... another appointment. Even though you know it's coming ... it's still hard anyway. But all things considered, she did well today. I'm looking forward to PT Thursday.

On the other side of my world ... people have been beyond generous. I have been completely and totally enveloped in a world of generosity I have never known before. Let me tell you ... I really am not worthy of this level of love and giving. I have not been kind to many, I am not thoughtful, I fail my friends, I forget to call my grandmothers, I don't give like I should, I forget to volunteer ... I am a hot mess of failure. And yet there is love. So so so much love. Which have turned my tears from sadness to good heart break. My heart is broken with so much goodness. Gift cards, thoughtful gifts, cards, texts, posts, e-mails, the hugs (virtual and real), MEALS ... HOLY MEALS!, the babysitting ... I just ... what am I supposed to say to that? Thank You? That's just pompous and rude at this point! I have no words to offer that adequately reflect how I feel. Which is seriously no small task (ask my husband). I have words for everything. Even made up words. I am AWESOME at making up words. But with this level of generosity, I can't. There is nothing but tears and THE MOST heartfelt THANK YOU. I hope someday it will be almost enough. I can't wait to date my husband again. It's been a few months. Thank You for helping make that possible for us again.

So here's to another week survived. A week where I was so overwhelmed by generosity and love that I wasn't sad. There is still so much work to be done ... but we're 1 week in and we're still here.

If you want it ... you go get it Hailey cakes! ... I love you more than you will ever even be able to fathom. And I will never leave you.

So Now What

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. **

Today I am ...

Most of you know my daughter Hailey was diagnosed with Periventricular Leukomalacia (PVL). Before you Google it ... let me give you the readers digest version: it is damage to the white matter part of the brain. It happened in utero and the cause is unknown, but I did not cause it. I have to keep saying that out loud because I will forever blame myself for this and that's the only way I can handle that guilt right now. Her motor skills will be impaired. For how long or how bad we do not know. We may never know. But she will require extensive Physical and Occupational Therapy (PT and OT respectively) for an indefinite period of time. It also means that she has an increased chance of being diagnosed with Cerebral Palsy (CP).

Honestly, I'm devastated. My child is broken and there is nothing I can do to fix her. She is "special needs" and words can't begin to express how much I hate saying those words. It's like venom to me.

But people want to know how I'm doing after a life altering diagnosis because most people can't imagine. And I want to tell you. But only if you REALLY want to know. Because really I am so many things it's absurd. I'm told that's okay, and it has to be. Because I can't not be.

I'm angry. I am sad. I'm confused. I'm overwhelmed. I am loved. I am supported. I am bitter. I am hurt. But it's not about me. It's about Hailey. But she has no idea right now. No clue, the struggles that lie ahead for her. The pain. And the hard truths that we will have to face. And as her mom who loves her more than anyone could fathom, I feel those for her. I feel the things she can't right now.

I am mad that I can't struggle for her, because you honestly have no idea what I would do to take this. NO IDEA. I would give myself to take that from her. I will pray for the rest of my life to God to have Him lay this on me. It will never happen because that's not His will, but I will ask anyway.

I am sad because when people find out her diagnosis they will say things like " Awww it'll be okay" and "Awww what a sweet baby! She's so beautiful." And "Just let me know if you need anything." These are at their core wonderful things. And it's not that they aren't appreciated. But they are just sentiment. First of all, no it won't be okay. At least not today or tomorrow or next week. MAYBE one day, but that's only a maybe. Second, she IS sweet and beautiful but not because her brain is damaged. And I KNOW people will say that because they feel bad for her and not because she really is. SHE IS SO beautiful. And this makes me die inside. It literally kills me each time I hear it. I'm sobbing just writing it. And lastly, I will maybe try to remember to call you, but I need you to say: here are the days I can watch your kids so you can take Hailey to her 50 billionth appointment. I am coming over on Saturday so that you can leave your house and pretend to be a normal human for 5 seconds, is 2 or 7 better? I am taking Emma to the zoo today, have her ready at 11. What night of the week do you want dinner I'm making extra chilli? THESE are the things I need but can't ask for. Or if I do ask, I NEED SOMEONE to help. Too often I ask and am denied and guess what ... a person who STRUGGLES IMMENSELY to even take the step to ask for help, and time after time after time never gets it ... struggles even more. And then I find myself drowning because I can't do this alone and I usually am. So if you want to help, I will ask, but please follow through. If not, THAT'S OKAY!!!!!!!!!!!!!!!! That does not make you less of a person, or mean, or unhelpful, or uncaring ... I think NONE of those things. It only means you aren't able. And HELLO ... I GET THAT!

I worry that she will be bullied MORE than my other children because she will most likely not be able to do what they can. Or will be slow. I worry that this will affect her intelligence and she will struggle in school like I did. I worry that people will say "But if you're identical aren't you the same? So why are you messed up and she's not?" - I cry about that the most. People assume that since they're identical twins they are the same. And in some ways they are, but they are still two different people. And the fact that Hannah does not have PVL further suggests that it was not my fault, because had I done something to instigate this, Hannah would have most likely been affected as well. (Have to keep saying it, and no it won't help if you tell me)

I feel guilt that it could be worse. I know that. I know this is not inherently life threatening. I understand. It's not cancer, it's not CF but honestly, that doesn't make it okay. Yes those are worse. You're right and shame on me in my boohoo session. But regardless, my child is hurt and can't be fixed. Bottom line. And as each parent is entitled to feel upset that their child has XYZ ... I have to be entitled to hurt for my baby. So saying it could be worse does not make it better. (So far, no one has, and for that friends, I thank you).

I feel hopeless. I have been robbed of hope because I had hoped the MRI would be inconclusive. And everywhere I turn when I am optimistic and hopeful that MAYBE it's not so bad, maybe she still can, MAYBE maybe maybe ... so far it's all been no. So you can be hopeful and optimistic FOR ME, but I will not be right now. It's where I am. That's all I have

I am Thankful. I am Thankful for an AMAZING family. For a mom who came out just to watch Emma and Hannah while we had the MRI then volunteered to turn around and drive back when I got the diagnosis. For a dad who wouldn't stop calling until I answered and was dead set on coming out JUST to hug me. (From Toledo to Cleveland) Mind you my parents have commitments but were willing to figure it out on the fly to be with me. A husband who went to work after the MRI and only a few hours later came home after the diagnosis so that I wasn't alone.  I am Thankful for a hilarious, spunky 4 year old who keeps telling me I don't have to cry anymore. Who stops eating to run over and give me a big hug. Who makes me laugh. Who when asked will still love her sister no matter what. I'm Thankful I have an aunt who is a PT who is moving mountains to come out for Hai's first PT appointment to go with me. For my friend who dropped everything to bring me coffee today and let me sob my face off on my couch. To give me wisdom and advise. My small group who prayed over me for my family and I last night. Who allowed me to laugh with them (And sometimes at them) because I need humor. I believe it is healing and for 2 hours my soul was not crushed and my heart not shattered. I am Thankful for the people who have already stepped up to watch a 4 year old and a 10 month old so I can care for Hailey and take her where she needs to go. I am thankful for so many people praying. I am Thankful I have never felt alone and I am Thankful I have always felt loved. And that's a lot to be Thankful for.

I put this in God's hands when Hailey was 3 months old and I knew she was special needs. I tried to be hopeful ... again ... and wait and see. But I knew. And I prayed long and hard. And while my heart is not for special needs children ... I'm now in the heart of the ocean swimming with sharks and doing my best not to drown or get eaten. But when you swim with sharks, you're probably gonna get bitten. Guess it's a good thing I'm a Lifeguard. I will fend off as many attacks as I can, swim as far as I can go, and treat the wounds when they come. And pray and pray and pray and pray that if I love her enough that that will be okay. Because honestly ... that is all I have. I am not smart, I am not brave, I am NOT strong, I'm not equipped, I'm not good enough for her. I will fail her more often than I help her, but I will never leave her and I will never stop loving her. PLEASE God let that be enough. I will be the stump in The Giving Tree. And I will give her all of me. And it will probably not be enough, but I'll give it all anyway.

I am an emotional disaster. My house is a wreck, my hair is disgusting, and my mind is in chaos. And that ... is how I'm doing. If you talk to me I will cry. If you see me I will be hideous. If you come to my house it will be disgusting. But we are alive. And we are here. So that's something. And that, is how I'm doing.

Whatever Happened To The Take?

I'm sure that if you're like me and watch way too many movies, you're thinking that title has something to do with a heist. You know, "The Take" from theft. The score, the loot, the well yeah okay I think you get it. But that's actually not what I'm talking about as I know nothing about thievery. Except of course that I am a professional thief because I have seen The Italian Job AND The Thomas Crown Affair. Also all the Ocean's movies and that one with Katherine Zeta Jones and Sean Connery. #expertstatus

But back to topic. What ever happened to the take? The take I'm referring to here is the take part of the "Give & Take" in a relationship. It's the advice that all married couples give to newly wed couples - "marriage is a give and take!" Except no one ever wants to take. Why is that? Is it because take is perceived as selfish? Do we only ever want to appear as the giver of the relationship?? Do we not realize then that makes our partner only a taker. Negative connotation!

My husband is literally a super hero. Maybe you've heard of him? In previous posts perhaps. Or well, pretty much only a small handful of people I know actually read the ridiculous thoughts put to computer screen, so maybe you know him. He literally has changed the world. (Not kidding, when he was in Ecuador on a missions trip, he made soccer goals for the kids in the village/area they were in and the organization that headed the trip asked for his plans and building materials because they were/are going to use it globally ... world changed.) Most people don't realize but there is nothing he can't do - except interact with humans - but that's totally besides the point! He can do carpentry (he built our daughters crib FROM SCRATCH), electric - I stand by with a 2x4 just in case, plumbing - we won't count the time he dripped MOLTEN metal (solder - pronounced saudder) IN his mouth ... I flipped out way more than he did. He can literally fix technical problems OVER THE PHONE - what are you a magician freak?! WHO DOES THAT?! Not even tech support can do that! And don't get me started on cars, outdoor power equipment and anything else with a motor ... #mechanicalengineer. But seriously, this kid is amazing. He's also very kindhearted and doesn't want to ever leave anyone hanging if they are in need of help. My point with all of this? He's what you might call in HIGH DEMAND. Our house is kind of like a revolving door for him. He comes home to leave again to play super hero to or for someone. Which is great. Truly. But, after years of this, it gets hard.

Yep. I said it. It's hard. It's hard being the feeble Lois Lane who can't do anything with out her Hero Superman, even though he's out reversing the Earth's orbit to turn back time to stop Lex Luther from blowing up the world.

I kinda feel bad for Lois. First of all, Lois is not my most favorite woman's name - sorry. Second of all, she really isn't a character without Clark/Superman. She never seems to be able to do anything for herself and acts more as an Achilles heal for Superman because of his love for her. All the villains know to go straight for her. And that's what I am. Lois here. Hangin out watching Superman save the world only to have problems of my own that only complicate his life. That's hard to admit.When you are a significant other, you like to think you bring something meaningful to the table. Even things out, make the relationship balanced. But in our world, that's just not the case. I'm home all day, pregnant like a crazy lady, with a massive beast thing we call a dog and a 3 1/2 year old. Doin stuff, but not changing the world. Some say, right but some day maybe your kids will! And that would be incredible - still not me. That would be them and I would be proud, but not responsible.

Since I got pregnant (with Twins ... WHAT?!) I've seen a lot of t-shirts and stuff for moms and one says "I grow Twins, What's Your Super Power?" While hilarious, and almost a purchase, it's also not really true. Given the right circumstances, many women can "grow" twins. In fact, many already have. It's not really a super power. It's more like a really neat capability. Hey look at me, I'm getting 3 kids in 2 shots. Also a blessing. But keeping beings alive isn't a super power either. Anyone can do it - even my husband. He might do it weird and extremely messily, and it does not fall into his favorites folder, but he can do it. (Told ya he can do anything!)

So -  back to the topic at hand here rambler! The take. So it seems that I would need to be the giver. Giving support and encouragement for the Superhero. But while I'm not a hero, I am human. And humans have needs. Yeah ... weird ... but we totally do. One of those is taking care of ourselves. One of the things you learn if you become a Lifeguard is that you have to pay attention and focus because if something happens to you during a rescue - what good are you to the victim you're trying to save? You're not. And now there are 2 people in trouble. That's why when people are drowning there are certain techniques and maneuvers used to complete a successful rescue. Those must be applied to keep both parties safe. The same goes in life, if you don't take care of yourself, what good are you to anyone else? While child caring and rearing might not be as powerful as changing the world like my Superman, it's needed for our family to survive. Mostly due to the fact that Jay can't change the world if he's busy changing diapers. (See what I did there? With the changing thing ... whatever guys I'm funny!) On the same note, I need to do things for me sometimes in order to stay remotely sane. I'm completely crazy mind you, but to stay in the realm of reality I need something for me. Sure I have this neat little blog, but it takes energy, research and time to do. I'm usually pretty tired after writing a post and then it still must be read several dozen times and edited etc.

So if I know this is needed, I believe it - says it in the Bible - even God rested, why do I feel guilty when I ask for something for me? Why is there such a stigma with taking? It even sounds like a dirty word - TAKE. Most of the time I have to do things for myself  during the week like Starbucks and Target. (To whomever decided to put the bucks IN the Target ... SHAME ON YOU. Now I have a ridiculous fetish to both!) But at the end of the day, I need the hero to play hero at home. And yet, I feel ashamed sometimes asking for his time. The great and powerful Jay. How dare Lois take some of his extremely valuable time!!!

But you know what. I can't feel ashamed. I have to feel that as half of the relationship, sometimes I need to take. Even if it's just a little. We ALL do. We need a minute to ourselves, for ourselves. To be alone, creative, read, work (on other things), grocery shop, sleep, pray, be human. Whatever it takes for us to continue to have the stamina and strength to continue to give. If you haven't, read The Giving Tree by Shel Silverstein. (Have your box of tissues ready ladies and don't roll your eyes gents) It is a fantastic children's classic about a tree that gives and gives and gives until it can no longer give. If in the relationship, you only give and NEVER take, you will end up unhappy. And relationships aren't happy and productive if both parties aren't happy. They just aren't.

So I would like to change the connotation associated with The Take. It's more like Share. Both parties in a relationship have needs - Superhero or not - we do. If in a relationship, you NEED to have the ability to speak for yourself and remind your partner that you're there too and no matter how amazing they may be, they still need your support. And for you to support, you need for you. It doesn't get selfish until you ONLY focus on you and are constantly asking for more. It's not selfish when it's only on occasion and when truly needed.

I hope some day we can bring back The Take. I hope at some point in time we can realize that there are 2 parts to every relationship, and I don't mean give and take. There is one and the other. Both should be equal.

Sigh ... someday I won't be tied to the railroad tracks! ... Someday.

Hey Look! I Have Spare Time! ... Kinda

Hello! Yeah ... I didn't let it FULLY die. Welcome back to you too! So it's been like a year, I know get off my back! I've got some stuff goin on. So let me briefly update you and then get to why I'm picking back up.

So here's what's been happening.  My volunteering is up, my husbands extra curricular activities are at an all time high, we took a big family vacation last fall, my daughter turned 3, found out I was pregnant again (YAY!), then we found out it was TWINS (Double YAY!), trying to be the awful parent I am and make the beyond late decision to enroll said 3 year old in Pre-School (can't believe we got in), preparing for that, prepping for twins, hubby started a new position at work, trying to get another fundraiser done, run my house, not go insane, and yeah ... that about sums it up. That also does not include building relationships, being on a launch team for our new church campus that has consumed my whole summer and LOTS of family business.

WHEW! Make you exhausted?? I hope? ... No? Just me? I'm the laziest person alive? Yeah, yer pry right. Well ... that's my story and I'm stickin to it!! So what brings me back?? Well besides the fact that I think about blogging all the time. I really do. I miss writing my incoherent and rambling thoughts for friends and strangers to read, preferably aloud. But, 9 times out of 10, I'm either swamped with more pressing issues, or just trying to take a break. A genuine break. I think the decaf coffee I ordered from Starbucks today that was definitely mis-made WITH caffeine helps my productive attitude today, but this is something I just can't get off my mind lately.

The top (Unlucky) 13 things I just beyond words love about my kid. Here's where any male readers I have left leave. But seriously, stick around. Having a kid scares most men nearly to death. I'm actually really proud my husband didn't puke or pass out when we found out it was twins during the ultrasound. That was always his one stipulation of having kids, I wasn't allowed to have twins. HA! Twin girls no less. I'm not sure who's in more trouble - me (SO MUCH ESTROGEN!!!!) or my husband ... (SO VERY MUCH ESTROGEN!) We both might run away from ages 12-23. Oh look at that! I'm rambling ... But dudes, bare with me, you may learn something and realize kids are totally terrifying ... totally.

So what do I love about my kid. That she's adorable, and I get compliments everywhere we go. That she's smart, or independent, or well behaved or yadda yadda, yadda ... Same stuff ALL parents love about their kids. No. Those things are awesome, but not on this list. These are the little things. Those things every mom tells every mom to be to take time to notice. I have. And I can't stand it any more. I love my kid!

13. The hair on her legs. Super weird, I understand. But seriously, she is almost 3 1/2 and she's starting to get noticeable hair on her legs and it is DANG cute. Why? I literally have no idea. You could say hormones, but I loved it before I was even preggers. I just think about how she is getting to be such a big girl and one day she'll hate it and be embarrassed and we'll have to walk that road. But for now, it is sweet and innocent and just so stinking cute. Probably because she doesn't yet look totally like Chewbacca. (Spelled that right all by myself too by the way! No one is giving you brownie points Christie! Oooo Brownies!)

12. The way she eats. Oh my gosh! I sit and watch her eat almost every meal. Mostly because I'm with her nearly 24/7, but also because I know the Heimlich and I'm usually eating at the same time. So I sit and stare at her like the weirdo I am. I LOVE watching her little lips smoosh together and pout out when she eats. Her bottom lip pops out like she's pouting with every chomp and HAHAHA dang if it isn't adorbs!

11. Her handful of freckles. She's got about 8 or 9 little teeny tiny moles or freckles - depending on who you ask. They're all smaller than the head of a pin, and I think they are one of the cutest things I've ever seen. She has one by her eye which I think is inherited from my husband and his sister (each have a very small, cute freckle by one of their eyes) and I call it her sparkle. She also has one on the end of her nose and one on her ankle above her foot that are favorites as well. I don't know why, I will probably NEVER know why, but I think they are amazing. Probably because they are a part of her.

10. Her crazy hair. It's crazy for many reasons, 1. crazy how little of it she has for 3. B. Crazy for how out of control what little of it she has. My husband calls it "little old lady hair" - short, thin and curly. It is. We refer to it as our humometer. It lets us know if it's humid out or not by how tight the ringlets are. She never wants me to do it, doesn't like to wear headbands and will only stick with bows for about half a day. Typically she runs her hands through it wildly and she kinda looks like Albert Einstein meets Annie. When she runs they bounce and it makes me giggle almost every time. Most times I say I hate it because she looks like an unkempt, neglect case, but in reality that's how she rolls. Crazy and it works. People usually don't say "look at that hair", they say "look at those curls!" Hey ... all the power to ya kid, leave the styling for the rest of your life ... you're ... well yeah you're gonna need it.

9. The way she reads to herself. I can be anywhere in my house, and often, I can hear the sweet, tiny sound of her voice making up whatever words come to her through the book she's paging through. Sometimes the words correlate with the book, like characters, title, actions in the book, and sometimes not at all. Either way it's so stinkin adorable, I keep trying to record her, but you know, once they know you see them, it's all over. Sometimes she'll tell me to "go away." HA! Love it. Read on little reader!!

8. How she isn't like other kids. Now ... I don't ALWAYS love this about her. I'm a typical parent and worry about ... well everything. It bothered me for the first 2 years of her life that she wasn't EXACTLY like every other kid we met or had ever met. If you're not a parent yet, kid comparison is like fast food. It's the easiest thing in the world and really not good for you. EVERY parent will tell you not to do it and EVERY parent will inherently do it. We can't help ourselves but to see what other kids are doing and compare that (good or bad) with our own kid. If you say you've never compared you're either delusional or lying. Not judging! Just saying, every parent has compared at some point about some thing. My kid is a little weirdo. Sometimes it scares me but as we are getting older, I'm diggin it! Like how she doesn't play like most kids. She doesn't really pretend very much but she sure can entertain herself. (What do you think she's doing right now?! She doesn't know I snuck into the office a few minutes ago to keep writing. I'll get up when she realizes I'm gone and needs me.) She sings, she dances, she tries to climb trees. Sometimes she jumps around, sometimes she reads, sometimes she just spins or runs around. She's crazy and wild and I LOVE that she gets to be all those things. She also likes to tell random strangers completely random things about herself like - "look at my dress!" "I have a bow!" "See my purse?!" ... yeah honey, no one cares, but good for you! She's starting to get my social skills - Thank God!

7. How she's doing this arms crossed thing when she's "mad." Talk about hilarious. When she's "mad" (I put mad in quotes because she's not really mad, she's just being goofy and kinda pretending to be mad aka she thinks she's mad) she turns her back, crosses her arms across her chest and makes a Hm sound. HA! What a little diva! I usually start laughing which in turn makes her laugh - sometimes - and I either let her keep doing it or we talk it out - as much as you can with a 3 year old. I love how stubborn she is - sometimes - though. Cracks me up and reminds me of ... well me. This is gonna hurt in a few more years. Badly.

6. How it doesn't take much to make her laugh. She has been the laughiest baby/kid. Man. It doesn't take much to make her laugh or smile and I LOVE that. She thinks farts are funny, loves to be tickled, and has even told a joke! Her own joke! Wanna hear it? Yeah I know you don't but it's my blog and I'm gonna share it anyway. We were trying to learn to spell one day, and we were working on MOM. So I had those letters written on a piece of paper and one by one we rattle them off. When we get to the last M she thinks for like a second and goes P! AAAAHAHAHAHAHAHAHAHAHA!!!! She purposely spelled MOP and laughed herself silly for about 45 minutes. Glad to see that's all I am to you kid ... a MOP. She cracked herself up about that on at least 2 other occasions as well. She's hilarious and I love love love to watch her laugh and laugh with her. Laughing is our favorite!

5. Her interest. She is a little wonder bug. She got that from her dad - Thank God! I love to watch her face as she investigates something. Whether it's a bug or a leaf or a new toy. She gets her fathers furrowed brow and goes to work. AWESOME. Go investigate little explorer! Figure out your world. Man it's so cute to watch the eyes, practically see the ole wheels turnin in the noggin and then out comes the tiny finger to poke. Love it.

4. The way she looks right after sleep. I really don't know what it is; maybe it's the fact that I've had time away from her, or that she's extra lovey, but the way she waits for me after waking up is one of my favorite parts about the day. It used to be in her crib, then she got a big girl bed and got out and would knock on her door, now she opens her door and waits for me at the top of the stairs. She still has a little bit of sleep in her eyes, not ready to talk yet, whackadoo hair and a forlorn longing look for her mommy on her face. UGH! LOVE! Sometimes this moment gets me so mommy I feel like I could explode with Love for her. We always hug, I usually tell her I love her and post potty (priorities) I ask how her sleep was. Some days I get a snuggle and some days I don't, but I always get a happy girl with hugs n kisses.

3. The way her breath smells after sleep. Oh my it's stinky. Everyone's breath is stinky after sleep. Hers is no exception. But there is just something about it. It's a sweet stinky. If I get post sleep snuggles I usually try to lean in close when she talks to get a whiff. Again, why? No idea. Really. I can try to say that it's the result of rest, or her, or I have no clue. All I know is I love it. Weird, crazy, yep, but can't be helped. Hers smells different and better than my husbands and definitely doesn't make me wanna throw up - so that could be part of it too. There's really no way to tell.

2. Her face. Yeah all parents think their kids are cute, I know. But I LOVE her face. Not that I think she is the "cutest" kid on the face of the planet, but just looking at her face. I love her cheeks and eyes, her teeny little nose. How soft her skin is. I could probably stare at her face up close for hours. Yes I need more date nights out, so sue me! But seriously, I just absolutely love everything about her face. There isn't one specific thing I like or makes her pretty ... it's everything. I like to rub her cheeks gently, when she lets me, and  pull her bangs off her forehead and just kiss her. Love.

1. When she tells me "Love you too Mommy." This is one every parent will tell you is the best. Because it is. No way around it. When you hear your child tell you they love you - forced or not - it is euphoria. I honestly have no idea why people do drugs. Have a kid, work hard to raise them, love, care for and protect them, and listen to them tell you they love you. High as a kite. Best feeling ever. Makes those moments when you want to leave them on the side of the road worth it. Those days when you can't stay out drinking or go where ever you want whenever you want. Wear a bathing suit the same way (for some of us - those of you freak moms who you can't tell you were ever pregnant and you get to walk around in a bikini ... good for you but you stink. That is all.) - all worth it. It is one of the things that keeps my world spinning. Keeps me motivated to do and be better. To have more patience with her, to try to teach her more, to just keep her wanting to tell me she loves me. Mostly because I know there will come a day when I hear "I hate you!" more than "I love you" so maybe I'm just stockpiling, but either way, it's the highlight of each day.

My button isn't perfect and I won't try to shove in your face all that she can do that maybe your kid can't - mostly because that drives me nuts. I brag about her, but in moderation and I try to use humility and humor when I do it. As a parent you can't help but be proud of milestones and big moments, at any age. You don't have to try to make your child (or make them OUT to be) the single greatest kid to ever walk the earth. (That spot has already been filled and no one can surpass the son of God ... sorry ... really not even worth trying to surpass him) But it goes with out saying, even if you don't believe in God, it's still impossible to tell if your kid is actually the greatest ever - so why do we try? Love your kid for the freaky little weirdo they are. Love that they always want to ride in the shopping cart you don't want them to ride in. Love that they ask for something to eat then refuse to eat it. (WHY?! You told me Peanut Butter ... EAT IT!) Love that they tell strangers the most random things that the strangers pry won't understand because they don't speak "the lingo." Love that little thing you got shadowing you! And come up with your own list of all the things you love about them. Above and beyond the obvious. All our kids are smart, all our kids are independent, all our kids are perfect (or hellions) etc ... but what about their eyes? That one tooth that came in funky? The nape of their neck? They way their toes wiggle just a little when they sleep? What about those little things ... we'll probably forget all that one day, but I hope I never do. It's one of the reasons I couldn't stop myself from blogging it.

I'm sorry if this post wasn't for you, but I'm not sorry that I take the time to notice and love the little things. I hope that if not now, some day when you have a little person in your life (in ANY capacity) you take the time for the little things ... like hairy legs and pouty lips.