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. **