Our journey through life with hemiplegic cerebral palsy and infantile spasms

Thursday, August 1, 2013

One of those days

This morning we all woke up bright and early and for some odd reason I thought today was a good day to keep technology away from the kids, no tv, no cell phone, no iPad. Someone remind me again why I did this?.... No, really I'm glad I did, I needed to start somewhere. So, we started our day with Karsen screaming and pointing at the tv while Kuper and I made every attempt to distract him with toys, food, books, you name it. That was only the beginning. 

Off we went to Shriners. Not all of us, just me and the boys (Kuper works Monday-Friday and frequent Saturdays). I have never had a problem going places solo, well, solo with the boys that is. When I go places really solo, no kids, no baby, no child stuck to my hip, tugging on my pants, it's weird and awkward and I don't know what to do with myself. That's a whole different topic I won't get into today. We drove to sac, me and the boys, and I forgot my coffee.... This day was not going to be good. When we first showed up we were immediately moved over to radiology to get an X-ray  of Karsen's hips. We skipped it last visit so they wanted it this time. The hips and legs are good! The we waited for our doctor. We were fist seen by two other doctors, one was there for training. We went over Karsen's full history. I didn't mind, I'm all for educating doctors more especially when it comes to infantile spasms. After those two left, in came our regular doctor. At this point Karsen has had enough. He's been held down to a able for an X-ray, checked range of motion on all limbs, stretch, weighed, blood pressure checked and not another doctor wanted to look at his rash, which was on his leg today as well (because of drool soaking his pants, it's that bad). I had the hardest time hearing the doctor talk to me because all I could hear was Karsen screaming and crying, all while he continued to hit me and pull my hair and Karter is laying on the floor playing with his toy, yes the nasty, germ ridden dirty floor... I started to feel it creep up on me... You know, that feeling you get when it's all too much.... It was the chaos that was causing is, it was what the doctor was saying. In the midst of screams, car noises and hair pulling I could hear the doctor telling us to try this cream and let him know if it doesn't work. ARE YOU KIDDING ME?! It started to creep up even more, my adrenaline started to pump. Out walked the doctor to get this cream, and all I could do was sit still. What the heck do I do?! In comes the doctor, he hands me the cream and asks me if I have any questions. This isn't a first for me, and I'm sure it's not the last but I just started crying. I opened up the flood gates. In that moment I think the doctor knew he wasn't going to be able to us the cream and call it good. After 15 more minutes of discussing our options (while both kids are not behaving how I would wish, but I honestly didn't care at that point). We had decided to start the process for a referral for an ENT doc. Thanks goodness! We are making some movement here. We left on a good note, I wiped my eyes,  picked up my truant rum throwing, back arching, face hitting, shirt ripping toddler, and my sweet germ covered child and headed for our car.  We got loaded up and started to make our way toward home with the plans of running a few errands. 

Met my girl friend for lunch, both boys got a quick power nap and seemed so much better. Got seated(but apparently they sat us in the wrong spot) and decided to move us. I really feel bad for the girl but I WAS NOT HAPPY! Well, the move must have not been ok wi Karsen either. The melt down began, in the middle of the restaurant. Thankfully Karter was coloring and writing K's, happy as can be. But it took a solid 10 minutes of screaming, and I mean screaming, and me trying everything under the sun..... Except for one thing. Out comes the phone and on goes Mickey. I caved. I had to. If I didn't want to completely loose it Mickey had to be out on. In the midst of the 10 minutes of screaming, I started crying AGAIN! Ugh... Public place, plenty of people staring at me because of Karsen, and my poor friend that has no kids, dealing with what a circus my day had been. Mickey cured all.... For about 30 mins. It was 30 mins of peace and I was able to gain some composure. 

We left and started our few errands. Babies r us, Rodgers jewelry, gas station, then I decided to take the boys to the park. But before all of that Kuper called me to see how the appointment went. I lost it, AGAIN, cried like a baby. What on earth is wrong with me?! Nothing about this has been easy. No moment in raising Karsen did I say "wow, that was a breeze." In fact, I think in some ways it's gotten harder. I wasn't crying for me (ok, maybe some of it was)but crying because I can see how badly Karsen wants to talk, walk, not drool, all stuff other two year olds get that comes easy. I hate that he has so many appointments that he clearly hates. After I got off the phone with Kuper, Karter asked me why I was crying. I proceeded to tell him "I get sad every now and then for you and Karsen. I worry that I won't be a good enough mommy. I want you and your brother to be the best of friends and protect each other and be there for each other." He hopped in my lap, held me tight, told me "its ok to cry, it's ok to be sad. Karsen and I are already best friends, he's the bestest ever. I love you mommy." I'm crying now just haring that again in my mind, in my heart. I've been busting my butt with this kids when I fail to remember they are already bonded, they are Gods perfect gift. And yes it is more than ok to cry and be sad.

We finished our errands, hit the park and burned off some energy. It was exactly what I needed. I needed to see the joy and happiness in both my boys. Pushing each of them in the swings side by side, tickling them nd making them laugh was the best dose of medicine I could of had. No drug can give you the high that I got today from that brief moment. They are beautiful, they are driven, they are wise, they are compassionate, they are selfless, and they are only kids. Maybe I should start taking cues from my kids because, wow, they are pretty amazing.




3 comments:

  1. im bawling my eyes out over here!
    you are doing an incredible job.

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  2. I'm crying too. A hard day, but there is so much that was right too. You all are amazing. <3

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  3. Tears with you. I love you!! And don't feel bad about Mickey. I have paid my kids before for behavior. Because sometimes it's necessary.

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