Overwhelmed

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kindness Killed The Christie

So here I am, home alone and kids in bed by 8.  Say WHAAAAT? Guys ... I took a shower and washed my hair AND my face!! But it gets better ... I got out and put lotion on ... my legs and wait for it ... MY ARMS! I know, I'm incredulous too. Fifteen minutes of self indulgent bliss! Now I'm eating expensive German chocolate my friend gave me, drinking hot cocoa, watching a show I want and blagging to you. Yep not a typo ... Blog Bragging - Blagging. #trendsetter

Which brings me to my first thought. Scary I had a thought I know! I write my blog posts out in my head multiple times over different days and different times. I went back and forth on a title for this post and ultimately, I can't remember the other choices. No seriously though, this needed to be it. I need you all to know first how much I love you and second, I'm not blogging so you send me stuff. Ooooo ... Christie gettin harsh! Yeah. Deal with it. Your absurd generosity is killin me. You are literally killing me with kindness. You are wonderful and amazing and ridiculous ... and I hope you know that even though I don't Thank everyone the same ... I cry over every message, card, text, gift, box ... All of it. I hold off using the wonderful things you gave me because I don't want them to be wasted. I agonize over sending things back, getting more thank you cards or what would be the best and most appropriate way to express gratitude that can't be expressed. At this point what do I say??!! I'm out of adjectives. I wanted to blog about this because first of all, I use too many words for Facebook and second of all I thought it might be easier for people to get updates on our girl. I NEVER once EVER thought it would result in mountains of gifts, good thoughts, and overall out of this world generosity. Seriously I just thought maybe you'll read it and pray for us or help us once or twice with the kids. So PLEASE PLEASE PLEASE PLEASE know I am not doing this for stuff. Writing is cathartic for me. An indulgence that is as rare as a 10 minute shower. I enjoy it and I feel relieved when I'm done. I am able to get so many thoughts and emotions out in my writing and that's really all I ever wanted. I hope you know that.

Second ... Our girl. Our wonderful amazing nugget. Some of you have seen some videos and pics on Facebook and for those that haven't let me fill you in a little. It seems that she is finding her groove at therapy. The last 2 weeks she has done the best she has ever done. This week we started at home therapy through an Ohio based organization called Help Me Grow (HMG). I started off not too happy with my first couple of experiences with them. Since then, several meetings, phone calls, texts and emails and I really like our "service coordinator." She is very nice and honestly seems to like Hailey. She even said (jokingly) that she wanted to stop by on her way home just to see us. Hai's HMG PT is very nice too. And I really like her plan of action for Hai. On her fist visit she laid Hailey on her back and she proceeded to roll over. Yes ... my girl at 1 year old rolled over. I was ecstatic at the time (like a crazy person) and now as I type it out and actually process that information I'm a little teary. Just like when strangers tell me things like ... "Oh she's going to be so smart!!! Just look at her!" or "It'll get easier when they play together - they'll keep each other occupied." I just want to yell ... No. She won't. It won't be easier because they won't be able to play together for awhile. Ugh. So hard. How do you tell a stranger that your kid has brain damage?! LOL you don't! You just smile, choke down a tear and say thanks! But when Hailey does things like "YAAAAA" and claps her hands when I say yay - honestly gives me not only a smile but hope.  Hope that prospects that it won't affect (Affect effect? UUUUUUGGGGGHHHH!!!!! This is the only one I flippin struggle with! Okay you know what I'm gonna use the wrong one and if it drives you crazy sorry ... it bothers me too but even after I look it up I'm still not sure.) her cognitively. Although there are still aspects of this that make developing her brain more difficult. Like the fact that when I'm home, I really don't have time to sit and interact with her like I want and should. Which scares me. But then there are times when Jay and I both SWEAR she said nigh nigh when I was getting her ready for bed. Or when we were playing just the two of us and she said dog 5 times. That gives me light. And I'm not gonna lie I love it. Other pluses for her - we tried something new at PT yesterday. Hailey drove a car HAHA!! Yeah, it's every bit as funny as it sounds. She totally loved cruising and I wish we could have done it longer!! Maybe talented Daddy might have to track down a power wheels and suit that baby up for cakes! (One of Hailey's hundreds of nicknames is Hailey Cakes, cakes for short). She also tolerated prone (tummy time) WAY better than she ever has. MAY have taken some new toys and bubbles ... but we had her laughing while on her belly!! I've never seen her like that. She has also recently started getting herself up to sitting from almost flat. I was so super proud the first 70 times I watched her do it. Even Emma gets in on the excitement! HAHA Emma told me she sat up and I didn't believe her and sure enough she had! We also had pictures taken of all three girls and Hailey looked pretty good! She wasn't too "slouchy." I don't want her to be embarrassed later if she doesn't look like Hannah.

Which brings me to the emotions - all of them. I've been doing really well lately. I think you all have "cheered" me up. That and the fact that I've been able to leave my house with out my kids sometimes!! (THANK YOU!) No matter what the reason I have been doing our thing, finding my groove and getting it done. I finally got caught up on my phone calls, have my appointments scheduled and actually feel a little ahead in some areas. Sometimes (like tonight) I'm reminded of realistic reality. She has shown me things to make me optimistic, but as the neurologist said in the beginning, he's optimistically realistic. Like in the bathtub when I try to get her to stand up so I can wash her and her legs are unforgivably stiff and her feet are crossed. On a slippery surface that's like trying to make a drumstick stand on an ice cube - difficult. So, long story longer, we need to be real in the sense that we are dealing with the brain ... an AMAZINGLY magnificent complicated thing. It can do incredible things and simultaneously it's as delicate as glass. (Although Jay would argue with me that glass is actually super strong and it's too strong which is why it breaks because it has no give ... or something like that.) But it can be broken with such little effort. And like glass, the brain can't be put back together quite the same way. It can still be functional (with glue and time) and beautiful, but never quite the same. Which still haunts me. A friend of mine who is also a twin mama, and one of those twins has a chronic and fatal disease, told me once, that thoughts and emotions will sneak up on me like a ninja in the night. Which is the truth. When I started writing this a few days ago I had been doing well. Then this weekend I broke like a record. I cried in public twice. Both times to friends, but still I was an ugly ridiculous mess. Good thing these women are super nice and would never say I was as crazy as I was. Sometimes it just comes. How I am actually sometimes embarrassed in public, thinking people will think what's wrong with that baby. (Yeah I know, I'm awful. It's not something I want, it just happens) The thoughts about the day Hailey will know she's different. About the day we have to draft an IEP. About the day when SOMEONE says ... "So if you're identical, why are you messed up and she's not?" About so many things so far down the road, sometimes it's hard for me to see the here and now.

But I will tell you ... I have some days where I honestly forget. I forget she has to wear braces at night. I forget that she needs a supination strap during the day. I forget about the tape on her back or neck or arm. I forget she's on medication now (temporarily for reflux, that I don't think she has). And we just giggle and play and I stare at her absolutely breathtakingly beautiful face and she smiles. And I smile. And we are happy.

**** As always, Thank You for being so wonderful to us. The happy tears I cry always help to remind me of God's love. I have had several people tell me this blog breaks their heart. I'm sorry. There are two things I would never want - 1. Gifts, please don't feel obligated. 2. To make anyone feel bad. I have only ever wanted to be transparent, open, honest and grateful. Just to let you know where I stand, what's new with Hailey-gator and to publicly Thank each and every one of you for being so supremely awesome. ****

It Wasn't Supposed To Be Like This

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

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

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

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

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

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

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

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

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