i love my kids. i really, really, deep down in my soul, do-anything-for-them, love my kids. that said, there are moments where i don't know how to do that best or show it equally and that's something that i'm finding so hard.
i think it's more difficult when you have a kid with special needs and i'm still trying to get used to thinking about Caleb in that way. i always find myself trying to minimize and downplay his struggles, not that they are huge struggles but that almost if i accept them it makes his diagnosis more real. i still have difficulty accepting that he's on the spectrum and that he's going to struggle with things and i still forget that struggles aren't always bad for us.
anyways...
Caleb and Sadie each demand a lot of attention and for very different reasons. Caleb struggles with social situations and managing his tantrums and outbursts. Each week he spends 8 hours with his TSS and a couple of hours with his BSC and now we're adding occupational therapy to the mix. all of these things help him a great deal but it's a lot of attention that i think he would prefer not to have. on the other hand, Sadie will not be ignored. she almost seems to crave attention, at least most of the time and when big brother seems to be getting a lot of attention, it can be very difficult for a little girl.
a few weeks ago (Saturday), Sadie came down with a fever. not super high but significant enough to slow her down. we didn't see anything else wrong with her and so we administered ibuprofen and figured it would clear up in a day or two. Monday came and the fever was still there and still making her uncomfortable. we'd give her medicine in the morning, about lunch she would perk up for a bit and then by the afternoon she would be miserable. Tuesday morning was originally supposed to be her 4 yr checkup but instead became a sick visit when they saw the fever. the doctor looked her over and i still thought we were going to be sent home, convinced that she had the flu and kicking myself for not getting her the vaccine weeks ago at her brother's appointment. our doctor instead had a very serious tone and said that he wanted tests done. he mentioned mono, TB and the need for a chest x-ray and then the possibility of this Kawasaki syndrome, a very serious concern that would require a stay in the hospital. he pointed out Sadie's swollen lymph node on her neck- "her hurt neck" that i thought was code for a sore throat. then it was off to Children's for her tests.
for the rest of the week, Sadie became my focus. trying to take care of her fever, keep an eye out for other symptoms and generally be there for her. at the same time, trying to keep things as normal as possible for Caleb. Wednesday afternoon was the most difficult and the most conflicting moment for me. i noticed a red rash on the back of Sadie's shoulder and after reading up on the symptoms of Kawasaki (thank you webMD), knew that i needed to call the doctor. i filled him in on the change in her condition and he promised to call back with directions for us. Caleb was working with his TSS, a usual Wednesday afternoon but at the same time a lighter schedule then usual. at 3:15 the doctor's office called asking us to be there for 3:45. from the new house it takes us a good 20-30 min to get into Shadyside but i said we'd be there. i went upstairs and told Caleb we needed to go to the doctor's office for Sadie. he immediately said no and then the struggle began.
my little guy had no understanding of Sadie's need to get to the doctor's not because he didn't care but simply because he was focused on this unexpected change in his day. when he gets hit with these changes, sometimes he just says no and that's when i don't always know what to do. thankfully, i had his TSS there. she worked with him, talking to him, explaining to him, and coaxing him when i just didn't have the time or the patience to. i went back downstairs and gathered up Sadie. i took her down to the garage. Caleb still was refusing to come. i put her in the car and felt so bad leaving her sick and miserable even for the few moments it would take to go back upstairs to get her brother. again, thankfully, Caleb continued to refuse to go but he didn't tantrum. he's had trouble lately with tantrums and has had a few recently that lasted a good 20 minutes- time i didn't have in this instant. he let me carry him to the car, no shoes and no jacket. he also let me put him in and buckle him up. this would not have happened if he had been mid-tantrum. have you ever tried to buckle a 5 yr old in a seatbelt? it doesn't work well. i was so thankful that it went as smoothly as it did.
however, it still frustrated me that at this moment when i really needed to focus just on Sadie, i couldn't. i don't know, maybe i'm naive to think that parenting can be balanced that easily, maybe it's always going to be a give and take with my two. it did make me worry that Sadie might feel that she never gets the spotlight completely- that maybe she will continue to "demand" our attention to balance out all that we need to give her brother. it's a very frustrating situation to be in.
we made it to the doctor's relatively on time. her doctor was pretty confident that it was Kawasaki and got in contact with Children's. then he sent us home to wait one more day. Thursday morning we got the go ahead to take her to the hospital and get her admitted. fortunately, Caleb's preschool is fairly close to the hospital so he got to go to preschool, and we got to get Sadie set up in the hospital.
she was very brave getting an IV and numerous temp and blood pressure checks. they did an echo-cardiogram and finally started her treatment, an immuno-globulin drip. she bounced back pretty quick and enjoyed getting to watch a bunch of movies and cartoons, not to mention all the get well presents that appeared.
Friday afternoon, Caleb came to visit and he was able to see that Sadie was okay and that the hospital wasn't as scary as he thought it would be. they even spent a couple hours playing in the playroom together.
after a day of observation, Sadie was released to go home and we were all thankful to have her back.
she's expected to make a complete recovery. she has a follow-up echo-cardiogram in January and until then, she's enjoying a baby aspirin a day to prevent clotting and keep her heart in good shape in case there was any damage to it. we're so thankful that everything went so well.
and now things are back to normal... or as normal as they get here :-)
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