I have so much emotion stirring in me right now that I am going to try really hard to stay on point as I write this post but I can't make any promises. Just thought I'd throw that in while I still can.
I feel as though this coming week has the potential to wrap up our struggles of the past five years into one little pretty box. I'm reminded of the days when Cale was a baby, maybe four or five months old, and I would literally walk with him upright for two or three solid hours in hopes of keeping his last meal down. I remember feeling so defeated when after those hours of walking he would spit up immediately upon laying him down. Food has always been Cale's enemy and getting him on the growth charts, and keeping him there, has always been one of our greatest challenges. The problems Cale faces with food have just gotten worse and worse over time and I finally feel like this trip to Ohio is going to give us the answers we have needed all along. I want to hope that. I need to hope that.
But the truth in all of this is that I am absolutely and utterly terrified. I'm scared for the procedures and tests that Cale will have to endure. They are going to be painful and extremely uncomfortable and I'm scared to have to look him in the eye while he's miserable and tell him that mommy can't make it better. I'm scared after all is said and done that we won't have the answers we were so desperately hoping for. I'm scared of the doctors telling us that there's nothing they can do for him. I'm scared that the life we've been merely getting through is going to end up being a life sentence.
We leave for Columbus, OH on Sunday at the painful hour of 5:50 am. Thank goodness we live in small city with a small airport that allows us the luxury of arriving at the airport forty-five minutes prior to our departure time. Cale will be admitted into the hospital on Monday and from then on it's test after test after test. We are leaving Riley behind with Grandma and taking Cash since he's basically a lesion of me. Leaving Riley is no easy task and I'm sick to my stomach about it. Nothing about this trip is going to be fun. We will fly home on the following Saturday.
I'm scared of the can of worms this trip is going to open. You see, I haven't allowed myself to cry about Cale in a very long time. It's been months, before Cash was even born, and to give you perspective of the timeline, I used to cry weekly over him. Even when Alex pours his emotions on me about our struggles with Cale I refuse to let myself cry. It's a conscience decision I make and for the life of me I don't know why I do it. I think maybe it's because tears are tangible evidence of my heartache and sometimes it's just easier to pretend that the hurt isn't there. I feel guilty for being sad and for wishing that my life was different. God gave me this life for a good purpose and so who am I to doubt His plan for me. I want to be strong, for myself and for Cale, but even as I write this I feel the lump in the back of my throat that signals that maybe a good cry will make things a little better. I just know I am going to be an emotional wreck this entire coming week.
As I was laying in bed awake last night I was trying to count up the number of hospitals and specialists we have taken Cale to since he's been alive. I honestly can't remember some of them and a lot of them seem to mold into one. Ohio is by far the furthest we will have traveled to seek help. My mind keeps wandering to what we will do or where we will go if this trip isn't successful. I want so badly for this to be the end of the road; for this to be our winning ticket! I want Cale to live a life free of pain. I want for him to be able to eat a fruit snack or enjoy a glass of water on a hot summer day.
Here's to hoping that our trip to Ohio will bring us one step closer to making those things a reality for Cale.
Tuesday, November 29, 2011
Thursday, November 17, 2011
mama bear
It has been quite some time since I've mustered enough thoughts to create a post worthy of anything intriguing. The thing is, if I had written anything I think it would have been paragraph after paragraph of poor me. Life has seemingly kicked my feet out from under me, stomped on me a few dozen times and then spit on me for good measure.
I've been reflecting on the days when Cale was first born and how we were thrust into this whole new world of challenges and unknowns. Alex and I were trying to navigate the best we could through circumstances we never in a million years thought we would be faced with. We somehow managed to deal with one day at a time and in doing so that made it not so scary. Looking back at our first year with Cale, though, it's one of those times when you think to yourself how in the hell did I ever make it through that? I now know the answer - God - but it still amazes me at the strength that He was able to instill in me.
I think this past year, or perhaps the past two years, will be a period in our lives when we look back and think the very same things. How was I ever able to wake up each morning and get through the day?
Cale's pain and struggles are ongoing. I recently read an article in a magazine from an author whose daughter has special needs. The daughter has a list of issues but the mom expressed how the hardest thing for her to deal with was her daughter's feeding and throwing up. OH! How I can relate! I've reached the point where I am no longer hung up on the sadness of Cale not being normal. In fact, some days I may even say I am at peace with that. It's Cale's pain, throwing up, and obvious misery that goes along with feeding that makes me want to cry and scream at the top of my lungs. I want to make him better, I want him to be able to enjoy life the way any five year old should be able to, and I want to see him play happily with his brother and sister. Unfortunately, all of those wishes are on hold until we can figure out why he's having so much pain and issues with eating, and then the journey of treating or curing the why will begin. It is such a long and daunting road but one that, as a mom, I am ready to take on with all the gusto and feistiness a protective mama can bring. I've played the role of nice for far too long and I'm ready to bring out my claws. Enough is enough.
Currently my days are filled with pounds and pounds of stress. I wake up, stumble my feet towards the coffee maker (or some days I wake up to it sitting on my night stand, thanks to a wonderful and serving husband), make Cale's breakfast, all the while praying that if he throws it up it will be before I get him dressed for school, carry him out to his bus and then say good-bye to him for a relatively stress-free two hours and forty-five minutes. It is during these hours that I am able to breathe. After he gets home is when I decide if I want to brave it and take my chances of going out of the house. You see, for whatever reason, Cale is 95% guaranteed to throw up as soon as you set him in his car seat. The position of sitting must be unbearable for him because he writhes in pain while he's in that seat and it's usually only relieved until he throws up. I should really make the back of our car his closet because that's when I need all the extra clothes. The longer I wait after he eats to get in the car the better our chances of making it anywhere without an incident. Consequently, we sometimes don't eat lunch until well after 2:00. Cale never complains about this and so I've gotten over feeling guilty about "starving" my own child. After lunch we usually try and do something calm. Cale usually chooses to lay on the ground and play with his iPad or sometimes I'll let him watch a rerun of Curious George or Cat in the Hat. Most of the time I end up cleaning up at least one episode of him throwing up between lunch and dinner. It is during dinner that I become the most anxious and stressed. As the day goes on the worse Cale gets. He's in obvious pain at the end of day no matter how long it's been since he's eaten. His body refuses to let him do anything fun and it breaks my heart that he's confined to laying on the floor while his sister is able to happily play within his reach. Immediately upon him finishing his dinner we get him down from the table and lay out his favorite blanket on our hardwood floor (purposefully avoiding the carpet) and let him play with his iPad until we are all finished eating. Alex and I nervously keep our eye on him, waiting for the signs that he is about to throw up. Sometimes we are lucky and are able to get him to the sink in time. Bed time finally comes and usually if he doesn't throw up within half an hour of getting him in bed we are good for the rest of the night. Time to turn out the lights and get some rest for tomorrow.
I hate the fact that I have to plan my outings away from the house around Cale's eating schedule. I hate it even more that even if I plan it perfectly that it's no guarantee that we're going to make it through without him throwing up. I hate that the embarrassment of Cale throwing up is a factor in accepting an invitation to someone else's house for dinner. I hate that throwing up is seemingly normal for Cale. I hate that he's in so much pain and I hate that we can't do anything to fix it. I hate that I don't have more patience for him and I hate that while he's suffering I'm mulling over the chore of cleaning up vomit for the fourth time that day. I hate that the aid on Cale's bus sits in front of him with a trash can at Cale's feet just waiting to catch whatever comes up, and you can be certain something will come up during the ten minute ride from school to our house. I hate Cale's disability and I hate that God is choosing not to heal him.
I'm sure deep down I can find joy in God's plan. I'm sure deep down I can say that I am thankful for the circumstances He's brought into my life because deep down I know He's making me more like Him.
But I can certainly say that this is a period in my life that I am going to look back and wonder how on earth I was able to get out of bed each day.
I've been reflecting on the days when Cale was first born and how we were thrust into this whole new world of challenges and unknowns. Alex and I were trying to navigate the best we could through circumstances we never in a million years thought we would be faced with. We somehow managed to deal with one day at a time and in doing so that made it not so scary. Looking back at our first year with Cale, though, it's one of those times when you think to yourself how in the hell did I ever make it through that? I now know the answer - God - but it still amazes me at the strength that He was able to instill in me.
I think this past year, or perhaps the past two years, will be a period in our lives when we look back and think the very same things. How was I ever able to wake up each morning and get through the day?
Cale's pain and struggles are ongoing. I recently read an article in a magazine from an author whose daughter has special needs. The daughter has a list of issues but the mom expressed how the hardest thing for her to deal with was her daughter's feeding and throwing up. OH! How I can relate! I've reached the point where I am no longer hung up on the sadness of Cale not being normal. In fact, some days I may even say I am at peace with that. It's Cale's pain, throwing up, and obvious misery that goes along with feeding that makes me want to cry and scream at the top of my lungs. I want to make him better, I want him to be able to enjoy life the way any five year old should be able to, and I want to see him play happily with his brother and sister. Unfortunately, all of those wishes are on hold until we can figure out why he's having so much pain and issues with eating, and then the journey of treating or curing the why will begin. It is such a long and daunting road but one that, as a mom, I am ready to take on with all the gusto and feistiness a protective mama can bring. I've played the role of nice for far too long and I'm ready to bring out my claws. Enough is enough.
Currently my days are filled with pounds and pounds of stress. I wake up, stumble my feet towards the coffee maker (or some days I wake up to it sitting on my night stand, thanks to a wonderful and serving husband), make Cale's breakfast, all the while praying that if he throws it up it will be before I get him dressed for school, carry him out to his bus and then say good-bye to him for a relatively stress-free two hours and forty-five minutes. It is during these hours that I am able to breathe. After he gets home is when I decide if I want to brave it and take my chances of going out of the house. You see, for whatever reason, Cale is 95% guaranteed to throw up as soon as you set him in his car seat. The position of sitting must be unbearable for him because he writhes in pain while he's in that seat and it's usually only relieved until he throws up. I should really make the back of our car his closet because that's when I need all the extra clothes. The longer I wait after he eats to get in the car the better our chances of making it anywhere without an incident. Consequently, we sometimes don't eat lunch until well after 2:00. Cale never complains about this and so I've gotten over feeling guilty about "starving" my own child. After lunch we usually try and do something calm. Cale usually chooses to lay on the ground and play with his iPad or sometimes I'll let him watch a rerun of Curious George or Cat in the Hat. Most of the time I end up cleaning up at least one episode of him throwing up between lunch and dinner. It is during dinner that I become the most anxious and stressed. As the day goes on the worse Cale gets. He's in obvious pain at the end of day no matter how long it's been since he's eaten. His body refuses to let him do anything fun and it breaks my heart that he's confined to laying on the floor while his sister is able to happily play within his reach. Immediately upon him finishing his dinner we get him down from the table and lay out his favorite blanket on our hardwood floor (purposefully avoiding the carpet) and let him play with his iPad until we are all finished eating. Alex and I nervously keep our eye on him, waiting for the signs that he is about to throw up. Sometimes we are lucky and are able to get him to the sink in time. Bed time finally comes and usually if he doesn't throw up within half an hour of getting him in bed we are good for the rest of the night. Time to turn out the lights and get some rest for tomorrow.
I hate the fact that I have to plan my outings away from the house around Cale's eating schedule. I hate it even more that even if I plan it perfectly that it's no guarantee that we're going to make it through without him throwing up. I hate that the embarrassment of Cale throwing up is a factor in accepting an invitation to someone else's house for dinner. I hate that throwing up is seemingly normal for Cale. I hate that he's in so much pain and I hate that we can't do anything to fix it. I hate that I don't have more patience for him and I hate that while he's suffering I'm mulling over the chore of cleaning up vomit for the fourth time that day. I hate that the aid on Cale's bus sits in front of him with a trash can at Cale's feet just waiting to catch whatever comes up, and you can be certain something will come up during the ten minute ride from school to our house. I hate Cale's disability and I hate that God is choosing not to heal him.
I'm sure deep down I can find joy in God's plan. I'm sure deep down I can say that I am thankful for the circumstances He's brought into my life because deep down I know He's making me more like Him.
But I can certainly say that this is a period in my life that I am going to look back and wonder how on earth I was able to get out of bed each day.
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