First, I want to preface this entry as this really is going to be mostly a journal entry, ( a long journal entry, a detailed journal entry - you've been warned) for my sanity more than anything else. Why post such a personal entry, you might ask? Because I want this blog to really represent who I am (who we are). I don't like to gloss over or sugarcoat or pretend to be anyone other than who I am or try to represent my family erroneously. We are anything but picture perfect. We are typical messy humans living a typically messy life. Some days we have it all together & some days we are holding it all together with every fiber of our beings
Sunday morning dawned beautifully. I even got to sleep in until 9:30. That was quite the accomplishment & I foolishly thought it was going to be an easy, breezy, perfect day. Silly me. Of course, I can almost laugh about it now, almost 24 hours after the really bad ended. To say it was an emotional roller coaster is a fairly accurate description. Started with a high. Moved on to a low & then up & down all day long. Bear with me I am using the old ploy of foreshadowing. The story is coming.
{clears throat} Starting again...Sunday morning dawned beautifully, I even got to sleep in...blah blah blah. All I had on my schedule for the day was to iron clothing for our eldest child's high school graduation. That is literally it, afterward, we would be joining his girlfriend's family for dinner, so I didn't even have 'make dinner' on my list. Considering the day before involved several loads of laundry, cleaning my bedroom & bathroom, cleaning all the floors in the house, giving our youngest son a badly needed haircut, make dinner...you get the idea, right? Anyway, I was very grateful to have such a light list for the day. Especially as I was already having a hard time holding back tears while I ironed, dressed, did my hair & makeup, just thinking about my baby graduating. I'm a mom, give me a break. I spent 25 hours in labor & quit my job after he was born because the idea of someone else raising him for me was unthinkable. My first baby is all grown up...first peak & fall on the emotional coaster of the day.
The husband left early to go pick up a grad card for the boy's girlfriend, something we of course completely forgot about because that is how this household rolls. And because we had been invited by her parents to the after graduation dinner at their house, we wanted to bring a gift, nothing better than wine...of which we are hopelessly clueless seeing as we have never partaken. One call to my sister, who knows wines as a chef & excellent wine lover later and CA knew what to pick up while he was out. Upon his arrival home I was almost finished with my hair & makeup & it was time to get Kier to the school for one last choir warm-up & prep for the commencement walk. Once he was home it was time to boss the remaining children around. Did the girl's hair, my nerves are kicking up by this point, commencement is less than an hour away. Thank goodness we had made arrangements for reserved handicapped seating, taking away one worry.
Just as I got Liam's teeth brushed & was prepping him to put on his nicely ironed dress shirt & pants, he informs me that his stomach hurts & I notice that he has the beginnings of a rash spreading across his chest. weeeeeeee....the coaster dives into a steep twisting turning drop. And I freeze momentarily. We CANNOT miss Kier's graduation! We CANNOT miss it! But if Liam is having a bad A-T day he can't be forced to go because what if he gets sick & throws up at the graduation? He's well known for his stellar vomiting timing. ALWAYS when we have big stuff going on. ALWAYS! At this point, I'm freaking out in my mind. Trying to keep my cool in front of Liam. I don't want him to feel bad, or get upset. It isn't his fault. He can't control the A-T. But the messy human in me wants to scream at him, NOW?!?!?! Are you freaking kidding me?!?!?! NOW!?!?!?! I can't do this right now! This is not freaking fair!!! Just one day. I ask for us to be allowed one freaking great family important day without this stupid freaking disease!! OHMYGOD!!! I HATE A-T & (just for a split moment) I HATE YOU, GOD!!!! None of this is said out loud. As I said it is unfair to unload all of this on Liam. He hates the disease more than any of us. Me complaining is not going to help the situation & all it will do is greatly & unjustly upset Liam. I ask him to be really honest with me. Liam, this is Kier's special day. He & his classmates deserve this day after all their hard work to get to this point in their lives. This is not a day to go if you shouldn't & risk getting sick in front of 600 ppl or more. These grads deserve this day to be about them, not about that kid & his family who threw up during their incredibly important & momentous graduation. Should you stay home today? Yes, he says, he feels sick enough that he doesn't want to risk vomiting in front of everyone. He wants his big brother's day to go off without a hitch.
But now we decide who will stay at home? CA & I cannot miss Kier's day. Maybe it wouldn't affect the rest of the graduating class of 2017, but it would ruin Kier's day if both of his parents are not there to witness his walk of fame. But graduation is set at 2 pm, right in the middle of church, so we can't call any of our friends because they have all already left for church, which is 40 minutes away from our house. And we have no other family in the area & we suck at making friends in our neighborhood that we feel close enough to, to ask if they can watch Liam. This is where being so far away from our support network sucks. We really are alone here. Some days just knowing how alone we are, how self-sufficient we have no choice in being at times really makes me want to cry, and sends me into a pity party spiral. No time for any of these feelings and ponderings right now though, so we call McKenna (13) & Nolan (10) into Liam's room & ask if they are willing to stay home?
Now, of course, they'd much rather stay home than be dressed up & sit through boring graduation. But they have to understand that this means they don't get to play video games, watch TV, and just ignore Liam. If he is possibly going to throw up or develop a fever or whatever might go wrong, they need to be in his room, watching over him & monitoring him vigilantly. Just in case. They understand & prepare to set up in his room, where he has 2 chairs. McKenna has her cell phone so if something happens she knows to text us, if it's an emergency to call 911 first & then call us after she calls 911. Don't worry, she's CPR certified, as are Kier & myself. I set Liam up with his Joey Pump, to make sure he stays hydrated & when he is feeling nauseated it is easier to get water into him through the Mini-One button in his abdomen than it is to try & get him to drink by mouth. Bonus, this way he can go to sleep, which he promptly did.
CA & I leave for the high school, right on time, in 90-degree humid temps, but I am already struggling to hold it together, as I am now split between wanting to be there for both of my boys. I'm worried about leaving Liam home with his siblings when he isn't feeling well & I'm desperate to see my baby do the diploma walk. Being a mom is hard stuff dude! Seriously! CA drops me off at the school entrance because there is no parking within a mile of the school. I find our reserved seats very easily but now I feel extraordinarily conspicuous as these are obviously reserved for those in wheelchairs, and I am completely alone, with 3 extra seats and a wheelchair space. So much guilt for primo seats, when I literally have no need of them anymore. But all the school people are busy with graduation ceremony things that there was no way I was going to bother them with my guilty conscience. Thankfully as the National Anthem was playing this lovely elderly couple, who were looking frantically & failing, through the immense crowd to find the rest of their family, came to a wandering stop right next to CA. Since the ceremony was started we offered them the 2 extra seats, that had been meant for McKenna & Nolan. They were so grateful & we were so relieved that we weren't needlessly hogging great seats. Although yeah, I was still wishing Liam & the kids could be there too.
See? Happy, sad, happy, sad, happy...up down all day. So overwhelming. As soon as Pomp & Circumstance began I started crying. Thank the Lord above for waterproof mascara! I teared up repeatedly throughout the ceremony. We called the kids at home just as they began the diploma walk & video chatted with them so they could see their big brother's accomplishment. I bawled, I screamed, I cheered, I clapped, I shook, I laughed. A complete basket case, you say? Yes, I was, completely, utterly. I was so grateful when it all ended. We had the long walk to the car in heat, and heels for me. Relieved it was over & we were able to go home & change before we went to dinner. When we got home, Liam was just waking up & feeling a little better, probably dehydrated from the heat & humidity of the day, also explains the rash as it was probably a heat rash. It's faded now.
Now on to the dinner. It was lovely & so nice of them to include us, we are grateful because Kier loves their daughter so much & is always so happy to be at their house. But, neither of us are talented at spending time with people we don't really know. We are horribly awkward & spending time with strangers is really hard for us. Once upon a time, I was quite gregarious, loquacious even. Years of being at home & not really having company over for Liam's health & because of my rampant anxiety issues from Liam's disease has altered my ability to make small talk with people I don't know that well. But as always, I am quite good at faking it till I make it. We really did have a good time, they truly are gracious & kind & fun. But in the moments leading up to the dinner, I was trying not to throw up. And wishing I had used Liam's illness as an excuse. But Kier means more to me than my fears & this meant a lot to him. And I would do anything for that freckly faced cutie pie of mine. Just more examples of highs & lows. I wish I had more friends that I could talk to out here but it is what it is & for right now, I guess I am, more or less, on my own when it comes to this kind of stuff.
We got home & relaxed some more, into cruddy old sweats & the TV. It felt so good & I thought the worst of the day was over. Liam is fine don't worry. We got the kids all ready for bed, Liam was feeling even better than when we came home after graduation, so yay. 10 minutes before Nolan & McKenna went to bed, I found the children's Zyrtec package almost empty. I just bought that pack of 12 on Thursday. They were for Nolan for whom this spring has been hard on allergy-wise. One dissolvable tablet every 24 hours. And he knows he isn't supposed to go near medicine without supervision, he is almost 11 after all. However, Sunday I guess he forgot he was almost 11 & reverted to the age of a 4-year-old. He ate at least 5 tablets yesterday alone, they taste so good he said.
One frantic terrifying phone call to poison control later & that kid will be lucky to see his 11th birthday if he pulls another stunt like this again! I could have killed him myself if I wasn't so afraid he might have just killed himself. OHMYGOSH! AAAAAARRRRRRGGGGHHHHH!!!!!!!!! Lord give me a break, please!?!?!?! Just one small freaking break!!!!!! Poison Control said if he hadn't shown any bad side effects, and gave me a huge list of things to watch for, then he will most likely be okay. He could go to bed & just keep an eye on him. If he started ticking off the warning signs we would need to call them back to let them know and take him to the ER. Thankfully he seemed fine. Just as I started to relax again, had taken my shower, was just starting to doze off after the insane day, he comes into our room & says, "Mom, I just threw up. In my room, next to my bed." {eye rolling sigh heaving moment of, 'well of course you did!'}
Approximately 2 hours later, after having cleaned up the tremendous amount of sic in the room, the bed, the nightstand, the carpet, the laundry he managed to hit, a second shower of the night for me and I was back in bed. However, it took me a while to achieve sleep. I finally passed out around 1 am. It was a L O N G day. An exhausting, draining, depleting, debilitating day. One filled with amazing highs & soul-crushing lows. And I would like to say I am glad it is over but it was such a momentous life-altering day for our firstborn baby that I cannot bring myself to lament too much. One day I will be able to look back & laugh about it, but I'm not quite there ... yet.
Like any journal entry, this one has relieved some more of the stress of the day & eased my soul to release it onto a page rather than holding it in my brain to continuously overwhelm my senses. I apologize if this has overwhelmed your soul as well... but you warned at the beginning of this post what this was going to be about. I am not perfect. I think unkind things about God from time to time. I feel certain that He loves me enough, & knows me well enough to understand my heart & know that I don't mean the bad thoughts about Him. And I feel He can handle a little trash talk on occasion. So long as I don't push Him too far. :)
No more woe is me. This pity party has left the building. I am heading back to sunshine station and this metaphor is losing my interest. ;) Sending you all wishes for lovely dreams. Congratulations Class of 2017. We, your parents, are so proud of all of you. We look forward to your future endeavors & cannot wait to see what you become when you finish growing up. Tomorrow I will post the pics & videos of the graduation. But this was purely a journal entry.
All my crazy love to the Interwebs!
Jess
Sunday morning dawned beautifully. I even got to sleep in until 9:30. That was quite the accomplishment & I foolishly thought it was going to be an easy, breezy, perfect day. Silly me. Of course, I can almost laugh about it now, almost 24 hours after the really bad ended. To say it was an emotional roller coaster is a fairly accurate description. Started with a high. Moved on to a low & then up & down all day long. Bear with me I am using the old ploy of foreshadowing. The story is coming.
{clears throat} Starting again...Sunday morning dawned beautifully, I even got to sleep in...blah blah blah. All I had on my schedule for the day was to iron clothing for our eldest child's high school graduation. That is literally it, afterward, we would be joining his girlfriend's family for dinner, so I didn't even have 'make dinner' on my list. Considering the day before involved several loads of laundry, cleaning my bedroom & bathroom, cleaning all the floors in the house, giving our youngest son a badly needed haircut, make dinner...you get the idea, right? Anyway, I was very grateful to have such a light list for the day. Especially as I was already having a hard time holding back tears while I ironed, dressed, did my hair & makeup, just thinking about my baby graduating. I'm a mom, give me a break. I spent 25 hours in labor & quit my job after he was born because the idea of someone else raising him for me was unthinkable. My first baby is all grown up...first peak & fall on the emotional coaster of the day.
The husband left early to go pick up a grad card for the boy's girlfriend, something we of course completely forgot about because that is how this household rolls. And because we had been invited by her parents to the after graduation dinner at their house, we wanted to bring a gift, nothing better than wine...of which we are hopelessly clueless seeing as we have never partaken. One call to my sister, who knows wines as a chef & excellent wine lover later and CA knew what to pick up while he was out. Upon his arrival home I was almost finished with my hair & makeup & it was time to get Kier to the school for one last choir warm-up & prep for the commencement walk. Once he was home it was time to boss the remaining children around. Did the girl's hair, my nerves are kicking up by this point, commencement is less than an hour away. Thank goodness we had made arrangements for reserved handicapped seating, taking away one worry.
Just as I got Liam's teeth brushed & was prepping him to put on his nicely ironed dress shirt & pants, he informs me that his stomach hurts & I notice that he has the beginnings of a rash spreading across his chest. weeeeeeee....the coaster dives into a steep twisting turning drop. And I freeze momentarily. We CANNOT miss Kier's graduation! We CANNOT miss it! But if Liam is having a bad A-T day he can't be forced to go because what if he gets sick & throws up at the graduation? He's well known for his stellar vomiting timing. ALWAYS when we have big stuff going on. ALWAYS! At this point, I'm freaking out in my mind. Trying to keep my cool in front of Liam. I don't want him to feel bad, or get upset. It isn't his fault. He can't control the A-T. But the messy human in me wants to scream at him, NOW?!?!?! Are you freaking kidding me?!?!?! NOW!?!?!?! I can't do this right now! This is not freaking fair!!! Just one day. I ask for us to be allowed one freaking great family important day without this stupid freaking disease!! OHMYGOD!!! I HATE A-T & (just for a split moment) I HATE YOU, GOD!!!! None of this is said out loud. As I said it is unfair to unload all of this on Liam. He hates the disease more than any of us. Me complaining is not going to help the situation & all it will do is greatly & unjustly upset Liam. I ask him to be really honest with me. Liam, this is Kier's special day. He & his classmates deserve this day after all their hard work to get to this point in their lives. This is not a day to go if you shouldn't & risk getting sick in front of 600 ppl or more. These grads deserve this day to be about them, not about that kid & his family who threw up during their incredibly important & momentous graduation. Should you stay home today? Yes, he says, he feels sick enough that he doesn't want to risk vomiting in front of everyone. He wants his big brother's day to go off without a hitch.
But now we decide who will stay at home? CA & I cannot miss Kier's day. Maybe it wouldn't affect the rest of the graduating class of 2017, but it would ruin Kier's day if both of his parents are not there to witness his walk of fame. But graduation is set at 2 pm, right in the middle of church, so we can't call any of our friends because they have all already left for church, which is 40 minutes away from our house. And we have no other family in the area & we suck at making friends in our neighborhood that we feel close enough to, to ask if they can watch Liam. This is where being so far away from our support network sucks. We really are alone here. Some days just knowing how alone we are, how self-sufficient we have no choice in being at times really makes me want to cry, and sends me into a pity party spiral. No time for any of these feelings and ponderings right now though, so we call McKenna (13) & Nolan (10) into Liam's room & ask if they are willing to stay home?
Now, of course, they'd much rather stay home than be dressed up & sit through boring graduation. But they have to understand that this means they don't get to play video games, watch TV, and just ignore Liam. If he is possibly going to throw up or develop a fever or whatever might go wrong, they need to be in his room, watching over him & monitoring him vigilantly. Just in case. They understand & prepare to set up in his room, where he has 2 chairs. McKenna has her cell phone so if something happens she knows to text us, if it's an emergency to call 911 first & then call us after she calls 911. Don't worry, she's CPR certified, as are Kier & myself. I set Liam up with his Joey Pump, to make sure he stays hydrated & when he is feeling nauseated it is easier to get water into him through the Mini-One button in his abdomen than it is to try & get him to drink by mouth. Bonus, this way he can go to sleep, which he promptly did.
CA & I leave for the high school, right on time, in 90-degree humid temps, but I am already struggling to hold it together, as I am now split between wanting to be there for both of my boys. I'm worried about leaving Liam home with his siblings when he isn't feeling well & I'm desperate to see my baby do the diploma walk. Being a mom is hard stuff dude! Seriously! CA drops me off at the school entrance because there is no parking within a mile of the school. I find our reserved seats very easily but now I feel extraordinarily conspicuous as these are obviously reserved for those in wheelchairs, and I am completely alone, with 3 extra seats and a wheelchair space. So much guilt for primo seats, when I literally have no need of them anymore. But all the school people are busy with graduation ceremony things that there was no way I was going to bother them with my guilty conscience. Thankfully as the National Anthem was playing this lovely elderly couple, who were looking frantically & failing, through the immense crowd to find the rest of their family, came to a wandering stop right next to CA. Since the ceremony was started we offered them the 2 extra seats, that had been meant for McKenna & Nolan. They were so grateful & we were so relieved that we weren't needlessly hogging great seats. Although yeah, I was still wishing Liam & the kids could be there too.
See? Happy, sad, happy, sad, happy...up down all day. So overwhelming. As soon as Pomp & Circumstance began I started crying. Thank the Lord above for waterproof mascara! I teared up repeatedly throughout the ceremony. We called the kids at home just as they began the diploma walk & video chatted with them so they could see their big brother's accomplishment. I bawled, I screamed, I cheered, I clapped, I shook, I laughed. A complete basket case, you say? Yes, I was, completely, utterly. I was so grateful when it all ended. We had the long walk to the car in heat, and heels for me. Relieved it was over & we were able to go home & change before we went to dinner. When we got home, Liam was just waking up & feeling a little better, probably dehydrated from the heat & humidity of the day, also explains the rash as it was probably a heat rash. It's faded now.
Now on to the dinner. It was lovely & so nice of them to include us, we are grateful because Kier loves their daughter so much & is always so happy to be at their house. But, neither of us are talented at spending time with people we don't really know. We are horribly awkward & spending time with strangers is really hard for us. Once upon a time, I was quite gregarious, loquacious even. Years of being at home & not really having company over for Liam's health & because of my rampant anxiety issues from Liam's disease has altered my ability to make small talk with people I don't know that well. But as always, I am quite good at faking it till I make it. We really did have a good time, they truly are gracious & kind & fun. But in the moments leading up to the dinner, I was trying not to throw up. And wishing I had used Liam's illness as an excuse. But Kier means more to me than my fears & this meant a lot to him. And I would do anything for that freckly faced cutie pie of mine. Just more examples of highs & lows. I wish I had more friends that I could talk to out here but it is what it is & for right now, I guess I am, more or less, on my own when it comes to this kind of stuff.
We got home & relaxed some more, into cruddy old sweats & the TV. It felt so good & I thought the worst of the day was over. Liam is fine don't worry. We got the kids all ready for bed, Liam was feeling even better than when we came home after graduation, so yay. 10 minutes before Nolan & McKenna went to bed, I found the children's Zyrtec package almost empty. I just bought that pack of 12 on Thursday. They were for Nolan for whom this spring has been hard on allergy-wise. One dissolvable tablet every 24 hours. And he knows he isn't supposed to go near medicine without supervision, he is almost 11 after all. However, Sunday I guess he forgot he was almost 11 & reverted to the age of a 4-year-old. He ate at least 5 tablets yesterday alone, they taste so good he said.
One frantic terrifying phone call to poison control later & that kid will be lucky to see his 11th birthday if he pulls another stunt like this again! I could have killed him myself if I wasn't so afraid he might have just killed himself. OHMYGOSH! AAAAAARRRRRRGGGGHHHHH!!!!!!!!! Lord give me a break, please!?!?!?! Just one small freaking break!!!!!! Poison Control said if he hadn't shown any bad side effects, and gave me a huge list of things to watch for, then he will most likely be okay. He could go to bed & just keep an eye on him. If he started ticking off the warning signs we would need to call them back to let them know and take him to the ER. Thankfully he seemed fine. Just as I started to relax again, had taken my shower, was just starting to doze off after the insane day, he comes into our room & says, "Mom, I just threw up. In my room, next to my bed." {eye rolling sigh heaving moment of, 'well of course you did!'}
Approximately 2 hours later, after having cleaned up the tremendous amount of sic in the room, the bed, the nightstand, the carpet, the laundry he managed to hit, a second shower of the night for me and I was back in bed. However, it took me a while to achieve sleep. I finally passed out around 1 am. It was a L O N G day. An exhausting, draining, depleting, debilitating day. One filled with amazing highs & soul-crushing lows. And I would like to say I am glad it is over but it was such a momentous life-altering day for our firstborn baby that I cannot bring myself to lament too much. One day I will be able to look back & laugh about it, but I'm not quite there ... yet.
Like any journal entry, this one has relieved some more of the stress of the day & eased my soul to release it onto a page rather than holding it in my brain to continuously overwhelm my senses. I apologize if this has overwhelmed your soul as well... but you warned at the beginning of this post what this was going to be about. I am not perfect. I think unkind things about God from time to time. I feel certain that He loves me enough, & knows me well enough to understand my heart & know that I don't mean the bad thoughts about Him. And I feel He can handle a little trash talk on occasion. So long as I don't push Him too far. :)
No more woe is me. This pity party has left the building. I am heading back to sunshine station and this metaphor is losing my interest. ;) Sending you all wishes for lovely dreams. Congratulations Class of 2017. We, your parents, are so proud of all of you. We look forward to your future endeavors & cannot wait to see what you become when you finish growing up. Tomorrow I will post the pics & videos of the graduation. But this was purely a journal entry.
All my crazy love to the Interwebs!
Jess