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.