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.