"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:
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.
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
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.
