I knew I should have just posted a quick update yesterday evening but I allowed myself the excuse of being too tired and now I don't know which events happened yesterday and which events happened today; each day has now morphed into one. So I will just do the best I can of getting everyone up to speed.
We finished the first test yesterday afternoon which meant the tube was removed from Cale's nose and his "constant" was relieved of her duties. I feel for the people that had to spend 24/7 in the presence of Alex, my mom, and myself. Cale seemed to throughly enjoy his freedom from all the tubes and wires, taking every opportunity to dash towards the nearest nurse's computer. He may have the entire hospital reprogrammed by the time comes for us to be discharged. His freedom didn't last long, however, and he was started on an IV around 8:00 pm. The nurse who poked him was phenomenal and got it on the first try with little crying from Cale. He was much stronger with this IV than he has been in the past. He got tucked into bed shortly after that and Alex and I headed back to the hotel with Cash while my mom stayed the night with Cale.
This morning we woke up bright and early and headed back to the hospital around 6:45. Cale was scheduled to be taken downstairs at 7:00 to be sedated and prepped for today's test. Let me just say now that I am so very thankful that I wasn't fully aware of exactly how today would go, otherwise I would have lost hours of good sleep worrying about it. The team of doctors in charge of his sedation were great - very caring, informative, and empathetic. They allowed us to stay by his bedside while they put him to sleep, which is something I hate to do but also couldn't allow myself not to do. I've watched Cale be put to sleep a number of times and each time it's been hard on me. I always cry but as soon as we've spent a few minutes in the waiting room I am able to pull it together. Today I watched the doctor push the medicine through his IV and I anticipated much of what I have seen in the past. This time, however, was different. Cale's eyes fluttered back into his head and he started gulping for air. His back started to arch in rhythmic motions and I immediately became completely and utterly terrified to my core. I didn't know if he was having a seizure or experiencing complications from the medicines but regardless it was one of the scariest moments I can recall from our medical journeys with Cale. The doctor saw the panic in my face and quickly assured me Cale was simply fighting going to sleep. The terror stayed with me, though, and I broke down after we were escorted into the waiting room. I don't remember a time of ever being that scared.
Once Cale woke up he was required to remain still for eight hours while a tube about the diameter of a straw went through his nose and down into his small intestine, measuring the pressures and contractions of his esophagus, stomach, and small intestine. Keeping a five year old still for eight hours is downright near impossible. We watched a lot of movies, played with a lot of electronics, and did our best to stay positive. Of everything we've ever had to do with Cale this was by the far the hardest thing to date. Cale was terrified and it was very difficult to try and explain everything that was going on. At one point during the test the doctors administered a drug through his IV to bring on contractions in his stomach and small intestine. This caused Cale immediate, unbearable pain. He started to throw up and finally within about an hour he seemed to be relieved of most of his discomfort. He was then allowed to eat his first meal of the day which was at about 4:00. As per usual he was in pain after this and as if on cue he projectile vomited right in front of the doctor. Even though vomiting is what we don't want to have happen it was God's doing that he did it in the presence of his doctor. This got her attention and I just know we are on the right path to finding a cause for all of this. Cale has won the hearts of everyone he comes in contact with and we have so many advocates on our side. I feel as though they won't let us leave until they are able to help Cale; it's as if they have all declared this their personal mission. I love it!
Cale's attitude through all of this has been amazing. He was downright miserable today. He has endured a great amount of pain, remained patient while being confined to a hospital room and forbidden to move for eight hours, given us all grace when we lose our patience, and even lifted our spirits when we get down. I feel somewhat of a failure because he is the one keeping me strong. As the parent aren't I supposed to be his strength? He's such an amazing little man and his light shines bright. It's so easy to become depressed in this environment. There are sick children everywhere and families walk around with tears in their eyes and faces marked with exhaustion. This hospital is not a happy place and it's hard to remain positive. There's something about the way Cale can be subject to such misery and yet come out on the other side with a joy that is inexplicable. I'm so very proud of him.
Tomorrow will be another long day with two different tests scheduled. They will be a piece of cake compared to today but I imagine Cale will have lost the desire to remain strong. We are all ready for this week to be over.
I cannot thank everyone enough for all of the prayers and words of encouragement we have received over the last few days. Each comment, e-mail, text, message, and phone call have lifted our spirits in ways I can't even describe. I am so grateful for the love and support of our family and friends and I hope I am able to repay your kindness someday. Thank you, thank you, thank you!
Until tomorrow...
Wednesday, December 7, 2011
Monday, December 5, 2011
ohio: day one
If there's one thing that I'm consistently reminded of in our journey with Cale is that there is always a child who is suffering more and a family who is hurting greater. As we've been walking the halls of the hospital we get a brief peek into what other families are having to deal with and it helps put the personal hardships of our journey into perspective. One child's room was decorated with lights and even had a Christmas tree, indicating that she had been there for quite some time and would most likely be there through Christmas. It makes our week long stay seem petty.
However with that said, today was no easy feat. We checked in this morning and were admitted into his hospital room. We met with one of the primary doctors that will be in charge of Cale's care and then he was taken to have an impedance probe inserted through his nose. This process was incredibly scary and uncomfortable for Cale and to be honest I had to look away as I held his head to keep him from moving. No matter how simple the procedure, the emotion of seeing your child in pain and in fear is always extremely difficult as a parent. His constant stream of tears made it challenging to tape the tube to his cheek. I hate seeing tears of fear.
The rest of our day was spent walking the halls, watching Max and Ruby, playing on his iPad, and typing on the computer. He was very despondent for much of the day and finally cracked a smile when he found a string of fiberoptic lights hanging from the ceiling of one of the play rooms. I anticipate spending much of our day tomorrow playing with these lights. I have no idea what draws him to these so much but I was thankful they brought on a smile and even a few laughs. Our Cale is one strong boy and I am constantly amazed by the bravery and poise he shows amidst the most difficult of circumstances.
The highlight of our day came late in the evening when we got to Skype with Riley. Seeing her and hearing her voice brought on the biggest smile we'd seen on Cale all day. Riley immediately noticed the tube in Cale's nose and asked him what it was for. Without waiting for us to respond she quickly asked if it was helping his tummy to feel better. Her words to Cale brought tears to all of our eyes! At only three years old she is one of the most compassionate people I know. Cale ended our Skype session by telling Riley that he loved her. :)
Now that today is over I am feeling even more confident that we are at the right place in the right hands. I'm hopeful and encouraged that these tests are going to reveal part of, if not all, the reasons Cale is in so much pain. The biggest encouragement so far has been the "constant" that is assigned to him. A "constant" is a nurse that is required to be with Cale 24/7. She monitors his every move; whether he is sitting or laying down, eating, coughing, gagging...anything! She will even sit at his bedside the entire night while he sleeps, which is a little awkward for Alex who is spending the night with Cale in the hospital. :) Apparently siblings are not allowed to stay the night which immediately made me unable to be with Cale. Alex and my mom will take turns spending the night.
Thank you for praying for Cale and our family. We feel every prayer and are so encouraged by the amount of love and support we have been given. More to come tomorrow!
However with that said, today was no easy feat. We checked in this morning and were admitted into his hospital room. We met with one of the primary doctors that will be in charge of Cale's care and then he was taken to have an impedance probe inserted through his nose. This process was incredibly scary and uncomfortable for Cale and to be honest I had to look away as I held his head to keep him from moving. No matter how simple the procedure, the emotion of seeing your child in pain and in fear is always extremely difficult as a parent. His constant stream of tears made it challenging to tape the tube to his cheek. I hate seeing tears of fear.
The rest of our day was spent walking the halls, watching Max and Ruby, playing on his iPad, and typing on the computer. He was very despondent for much of the day and finally cracked a smile when he found a string of fiberoptic lights hanging from the ceiling of one of the play rooms. I anticipate spending much of our day tomorrow playing with these lights. I have no idea what draws him to these so much but I was thankful they brought on a smile and even a few laughs. Our Cale is one strong boy and I am constantly amazed by the bravery and poise he shows amidst the most difficult of circumstances.
The highlight of our day came late in the evening when we got to Skype with Riley. Seeing her and hearing her voice brought on the biggest smile we'd seen on Cale all day. Riley immediately noticed the tube in Cale's nose and asked him what it was for. Without waiting for us to respond she quickly asked if it was helping his tummy to feel better. Her words to Cale brought tears to all of our eyes! At only three years old she is one of the most compassionate people I know. Cale ended our Skype session by telling Riley that he loved her. :)
Now that today is over I am feeling even more confident that we are at the right place in the right hands. I'm hopeful and encouraged that these tests are going to reveal part of, if not all, the reasons Cale is in so much pain. The biggest encouragement so far has been the "constant" that is assigned to him. A "constant" is a nurse that is required to be with Cale 24/7. She monitors his every move; whether he is sitting or laying down, eating, coughing, gagging...anything! She will even sit at his bedside the entire night while he sleeps, which is a little awkward for Alex who is spending the night with Cale in the hospital. :) Apparently siblings are not allowed to stay the night which immediately made me unable to be with Cale. Alex and my mom will take turns spending the night.
Thank you for praying for Cale and our family. We feel every prayer and are so encouraged by the amount of love and support we have been given. More to come tomorrow!
ohio: travel day
We rolled out of our driveway ten minutes later than planned and with three inches of fresh fallen snow the drive to the airport took a little bit longer than we had anticipated. Still, though, we got to the airport at a reasonable time and were pleased to see that the line at the checkin counter was only a few people deep. As we fumbled with luggage, car seats, strollers, and all the other crap that goes along with traveling with small children, we hear the guy at the checkin counter announce that the flight to Minneapolis - OUR FLIGHT - had been closed and that the gate was being shut. WHAT???!!! We still had at least half an hour before it was scheduled to leave! Thankfully, the employee had the departure time wrong and thought the plane left at 5:30 and not 5:50 like scheduled. Still, though, with all the chaos and confusion time was quickly slipping away and he was starting to tell people that if you had not yet checked in you would have to rebook the flight to Minneapolis. Thankfully Alex and I had just electronically checked in and held the tickets in our hands. We finally made it through that mess but literally had to RUN through security (or at least as best you can run through security) and after throwing shoes on the wrong feet, forgetting belts, and letting Cash's head bob crazily on my shoulder as we dashed to our gate, we finally made it on our flight, but not without the pleasure of receiving guilty stares as we obviously were the last people to board the plane...with two small children. I'm sure everyone just loved us.
Our flight to Minneapolis was nice and smooth and it was beautiful being able to watch the sunrise. Cash did okay on the plane, crying a few times until he finally allowed himself to fall asleep. My mom met us at our gate and we all got on the plane to Columbus, OH. That flight was also smooth and Cash behaved much of the same. Cale of course loved every minute of the flights and was a little sad when it was time to get our rental car. With the exception of nearly missing our flight it was a good travel day.
Once we got settled in our hotel we ran to the grocery store and looked for the nearest Starbucks. The latter of these two is by far the most important. :) We made dinner in our hotel room and took Cale swimming, something that he greatly enjoys and certainly deserved before the start of this week. Overall I think I would say our spirits are high and we are all incredibly hopeful that we are in the right spot seeing the right doctors. I think it's safe to say we are excited for the hope of finding answers.
I must admit, on the morning of Cale's first test I am mostly calm, which is pleasantly surprising. I know things will most likely change once Cale is admitted and the painful process of explaining to a thousand people why we are here begins, but for now I am certainly enjoying the calm.
I know without a shadow of a doubt that this calm comes from everyone who has been praying for us. I am so thankful for such an amazing support system. From those of you who have been there and done this to those of you that simply loves us and our little boy, thank you! It means so much to Alex and me to know that you're sharing with us on our journey.
We check in the hospital at 10:00 ET and Cale's first test begins today. It's a 24 hour test in which a tube is placed through his nose and down into his stomach. I'm not entirely sure what exactly this test is looking for but I will hopefully be able to update more tonight.
Thank you again for your continued prayers! If you want specific things to pray for here are a few things I know we'd appreciate:
Tuesday, November 29, 2011
columbus, ohio
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.
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.
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.
Wednesday, September 14, 2011
milestones
Here are a few (good) things going on with Mr. Cale:
- Three weeks ago he learned (gained the confidence) to go down the stairs all by himself with just the use of a handrail! This is both good and bad in the sense that he loves his new talent and wants to practice it all day long which provides many opportunities for him to do so unsupervised. I'm waiting for his first tumble.
- With a lifejacket and four noodles tucked under his arms he is able to stay afloat in the swimming pool without someone holding on to him. He is also figuring out that if he kicks his legs he can move to other parts of the pool.
- With nearly 4 1/2 years of speech therapy under his belt he is gaining more and more control over his speech. He can say all of his vowels without a second thought and is trying new sounds every day. A lot of his words I can understand if I know the context and if I made a list of the words he can say it may add up to about ten or so.
- He can finish an entire small cup of ice cream from Dairy Queen!
- He can get on and off a tricycle without any help, although peddling is still a work in progress.
- He is able to show irritability towards his sister, in a way she can understand, when she's wanting him to do something that he doesn't want to do. I love that he's growing a backbone...this will come in very handy in life. I'm still looking for mine.
- He can identify most letters and can even produce a few of the correct sounds. I'm pretty sure he'd be able to say them all if his mouth would just work right! :)
- He is in the beginning stages of potty-training. We have had a handful of successes...wahoo!!!
- He wants nothing more than to be Buzz Lightyear from "Toy Story".
- He can play at a park like a semi-normal kid because he can go up stairs all on his own and finally feels confident enough to just go for it, even if it is a little scary!
Here's what Riley is up to:
- She took swim lessons with Alex at the start of the summer and can now swim around the pool all by herself with a lifejacket on. She hops in and out without using the stairs and even dares to jump off the diving board. I am cautious of everything, she is cautious of nothing!
- Riley sits in on Cale's speech therapy and so she's also able to identify most letters and say a few of their correct sounds.
- She is able to count objects, as long as there isn't any more than ten. :)
- She is starting to "pretend play" and it's absolutely hilarious to listen in on the scenarios she thinks up.
- She is on her way to being potty-trained during nap time and bed time. She's completely potty-trained during the day.
- She loves the movie "Cars" and would be content to watch it every day for the rest of her life.
- She can swing in a big girl swing which terrifies the heck out of me.
- She can color mostly in the lines. :)
- She hates that she can't go to school like her big brother.
All in all, Riley is growing up way too fast. Her mannerisms and choice of words all point to a young girl instead of my little toddler.
And finally, Cash:
- At two months old he weighs 13 lbs which puts him in the 75th percentile. His height also hits the 75th percentile at 23 3/4 inches.
- He poops ALL DAY LONG. I'm very serious when I say I don't think I've ever changed just a wet diaper and I think we go through about twelve diapers a day.
- He is starting to go longer stretches between feedings, so now I can go about three hours without feeling like all I am to him is a cow.
- He is sleeping okay at night. His longest stretch of sleep has been five hours but that has only happened once. It's usually two or three hours before he starts yelling at me to change his diaper and feed him.
- He is smiling more and more and within the last few weeks has really started using his voice. I love those little coos.
- He is able to control his head very well and I can contribute this to the fact that he is the first child of ours to not loathe tummy time. He is content to be on his belly for five or ten minutes before he realizes that his face is beginning to smash into the carpet. :)
- He has an uncanny ability to know when he's not being held, therefore I spend the majority of my day with a baby in my arms. Note: I secretly enjoy this because, God-willing, he is our last baby and I want to soak up and enjoy every minute I have with this little guy.
- He tracks me from across the room and is soothed by the sound of my voice.
He is definitely an easy baby, or perhaps it just seems that way because he's the third baby and we've relaxed quite a bit. For the most part he's pretty chill and I could not be more thankful that God outnumbered Alex and me with a third child. :)
Wednesday, September 7, 2011
normal mom things
Being Cale's mom sometimes feels like the loneliest place in the world.
No, it is the loneliest place in the world. Or at least in my world.
I want to be a normal mom.
With summer winding down and school back in session, moms are excitedly dropping their kid off for their first day of school and having to hide back the tears when their child doesn't want them to kiss them good-bye or drop them off too close to the front of the school. Moms are fighting to sign up their kids for soccer, gymnastics, dance, and t-ball. Their schedules are crazy and their calendars are all marked up with different activities with lists of whose responsible for taking who where.
Today was Cale's first day of school and we have spent several weeks preparing him for this day. The mere mention of the word has brought on a bucket of tears and hours wasted with anxiety. It's very difficult for Cale to forget anything and we're learning that it's becoming more and more of a struggle to redirect his thoughts and attention, therefore an entire day can be spent assuring him that his first day of school is going to be okay. Last night we had our first big success of talking about school without encountering a major meltdown. I pretended to be his teacher and went over what I thought she might ask him when she saw him for the first time. He seemed to like that and we saw our first glimpse of excitement in him. He actually went to bed without crying about today's looming events. Success!
We woke up this morning and only had a few bouts of whining. He ate breakfast, got dressed, brushed his teeth and we were all ready in perfect time to take a few 'first day of school' pictures. I was relieved to see that he was in a good enough mood to smile for the camera. In fact he even seemed excited which filled my heart with unexpected joy. After pictures we hopped in the car and the drive to school was relatively calm. We went over what he was going to tell his teacher if she asked him what he did this summer and that seemed to lighten the mood. Once we pulled up in front of school I could tell he was becoming more and more anxious, and sure enough it was a tiny bit of a struggle to get him to walk into his classroom. He clung to Riley and shed a few tears when it was time to say good-bye but as soon as we turned the corner the cries muffled out so I'm assuming he calmed down rather quickly. We survived the first day of school drop-off.
Needless to say, I wasn't crying over how independent and grown up my little boy was becoming. I walked away wishing that for special days like these I could be a normal mom.
With summer winding down, our schedule is changing and a new routine is about to begin. My calendar is full and life is about to get crazy. However, instead of fighting to get Cale signed up for t-ball or soccer, I am fighting to schedule his many therapies so that we can get through the week with a tiny bit of free time. My calendar is full of doctor appointments, case worker meetings, and conferences on how to maximize Cale's potential. I wish so badly that I was a normal mom that could sign my son up for normal things.
With Cale getting older and his peers growing right along with him, I feel that we are on the journey to getting left behind. It seems as though my girl friends get together because their kids enjoy playing together...they ask to play together...and no one ever asks to play with Cale. I feel as though I am getting left behind which is both incredibly hard for me to admit and incredibly difficult for me to accept. I always thought Cale's differences would affect him in this way, never me. I just want to be a normal mom.
The crappy thing about all of this is knowing that Cale probably wishes he were normal a million times more than I wish I were a normal mom. My heart just aches for him, for us.
No, it is the loneliest place in the world. Or at least in my world.
I want to be a normal mom.
With summer winding down and school back in session, moms are excitedly dropping their kid off for their first day of school and having to hide back the tears when their child doesn't want them to kiss them good-bye or drop them off too close to the front of the school. Moms are fighting to sign up their kids for soccer, gymnastics, dance, and t-ball. Their schedules are crazy and their calendars are all marked up with different activities with lists of whose responsible for taking who where.
Today was Cale's first day of school and we have spent several weeks preparing him for this day. The mere mention of the word has brought on a bucket of tears and hours wasted with anxiety. It's very difficult for Cale to forget anything and we're learning that it's becoming more and more of a struggle to redirect his thoughts and attention, therefore an entire day can be spent assuring him that his first day of school is going to be okay. Last night we had our first big success of talking about school without encountering a major meltdown. I pretended to be his teacher and went over what I thought she might ask him when she saw him for the first time. He seemed to like that and we saw our first glimpse of excitement in him. He actually went to bed without crying about today's looming events. Success!
We woke up this morning and only had a few bouts of whining. He ate breakfast, got dressed, brushed his teeth and we were all ready in perfect time to take a few 'first day of school' pictures. I was relieved to see that he was in a good enough mood to smile for the camera. In fact he even seemed excited which filled my heart with unexpected joy. After pictures we hopped in the car and the drive to school was relatively calm. We went over what he was going to tell his teacher if she asked him what he did this summer and that seemed to lighten the mood. Once we pulled up in front of school I could tell he was becoming more and more anxious, and sure enough it was a tiny bit of a struggle to get him to walk into his classroom. He clung to Riley and shed a few tears when it was time to say good-bye but as soon as we turned the corner the cries muffled out so I'm assuming he calmed down rather quickly. We survived the first day of school drop-off.
Needless to say, I wasn't crying over how independent and grown up my little boy was becoming. I walked away wishing that for special days like these I could be a normal mom.
With summer winding down, our schedule is changing and a new routine is about to begin. My calendar is full and life is about to get crazy. However, instead of fighting to get Cale signed up for t-ball or soccer, I am fighting to schedule his many therapies so that we can get through the week with a tiny bit of free time. My calendar is full of doctor appointments, case worker meetings, and conferences on how to maximize Cale's potential. I wish so badly that I was a normal mom that could sign my son up for normal things.
With Cale getting older and his peers growing right along with him, I feel that we are on the journey to getting left behind. It seems as though my girl friends get together because their kids enjoy playing together...they ask to play together...and no one ever asks to play with Cale. I feel as though I am getting left behind which is both incredibly hard for me to admit and incredibly difficult for me to accept. I always thought Cale's differences would affect him in this way, never me. I just want to be a normal mom.
The crappy thing about all of this is knowing that Cale probably wishes he were normal a million times more than I wish I were a normal mom. My heart just aches for him, for us.
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