Our journey through life with hemiplegic cerebral palsy and infantile spasms

Thursday, October 31, 2013

We should all be on the same side

Parenting is hard. Its challenging, frustrating, exhausting, and rewarding all bundled into one. For me this past two years has been, more than anything, emotionally exhausting. I've learned to grow thicker skin. And no, I didn't learn to grow it for my kids, I learned from other parents, other adults.

I would like to know when, we as parents, were no longer on the same team? When did we stop trying to lift each other up, when did we stop encouraging each other to keep at it? When did we decide to start judging each other so harshly and therefore being so harsh on ourselves?

I had something happen today that was out of no ordinary for me. If you have a special needs child or even just a difficult child or a strong willed child.... well, lets just say if you have a child.... you've had your moments of melt downs in public, the fits where everyone stares and you can almost feel the burn of every set of eyes on you. I was unfortunate enough to have two of these moments in a matter of an hour in two different locations.

Time one: in the doctors office waiting for Karsen's hearing test. They told to me to come in a little before 9:45 since we are a new patient to fill out paper work. Ok, no biggy. We get there 15 mins early. I'm feeling pretty proud of myself right now, that's a first in a while. I fill out the paperwork all while trying to keep Karsen away from that darn water machine and Karter is sitting oh so patiently and acting like an angel (this is odd). I finish the paperwork right at 9;45. Boom! Doctor then in turn runs 25 mins late! are you kidding me?! Since my boys are the only ones in the office I decided to let them tickle each other. They LOVE this game and who doens't love the sound of little boy giggles?! 5 minutes later it ends in a hard fall with Karsen, a goose egg on his head and the lady behind the counter whispering to the other gal "That's why you don't let your kids run around". Ok judgey lady. whatever. I brush it off. I was doing what I had to given my situation. he could have fallen doing anything.

Time two:
Karter was in serious need of shoes, so we went to do some quick shoe shopping. I got the shoes, paid, and then shortly realized the $20 off wasn't applied. Had to in turn go to the service desk to get it fixed. At this point I was impressed that my boys were behaving so well. We finish up, walk out to the car and Karsen drops his snack. Oh the world ended. I picked him up and tried to calm him down. He was tired, cranky, sad, hungry all rolled into one. He began hitting me, hitting himself, bit me, screaming drawing all sorts of attention to me. Ive dealt with this before, it's nothing knew. As I talked to him explaining to him what I was doing I could feel that burn. The eye burn. I shouldn't have even looked but I did. When I turned around, this woman about my age looks straight at me and rolls her eyes. I continued to fix my situation, loaded my boys up and drove off.

After both situations all I could think about is how rude and judgmental people can be, and how sad it was that we don't try to encourage each other. Don't get me wrong, my friends are great, my family is great. I have felt nothing but love and encouragement from them when it comes to dealing with my children and going through the hard stuff. But strangers, it's very rare to have someone encourage you along, to give you that "I know what you're going through" smile.

I know before I had kids I thought the same thing, I did the same things and I remember telling myself that I will never raise my voice at my children and I will never have  a child that bites or hits, that will not be tolerated. Well guess what?! It's not your choice. You're given what God has given you. Boy has it been a humbling experience. We need to stop passing judgment and start encouraging other moms and others dads. Let them know they aren't alone and yes it is hard and if you're child says they hate you (thank you Karter for my first of many) that you're doing something right. So, here's my letter to those eye rollers.

Dear Rude Judgey Lady,

The next time you want to roll your eyes at me put yourself in my shoes. What good has come from your eye roll? Know that I see you.Know that it's hurtful. Know that a simple dirty look can hurt for the rest of the day, or ever a week. Remember that each child is unique, each situation is complex and different. Give an encouraging smile, a sympathetic grin. Go out of your way to tell that mom they are doing a good job staying strong. Heck, treat them to a Starbucks or a candy, or you could even ignore the situation all together. This thing called parenting isn't easy, but it can make it feel a lot breezier if you stop passing your judgment and start encouraging and uplifting others to keep at it.

Sincerely,
A mom that is constantly struggling and praying to become the mother God intended her to be and is a doing a pretty darn good job




EEG results

Our neurologist called yesterday to let us know the results of the EEG. The good news? His infantile spasms has not returned. The bad news? His EEG is very irregular and puts him at very high risk for seizures. So what do we do? The same thing we have been doing, watch him like a hawk. I wish she was able to tell me what movement to look out for but every brain is different as well as every body. So we just watch for any/all. I knew that he would always be high risk for seizures, especially since he had them before. It's nice to be able to check off infantile spasms off of his medical chart....well, ok it will still be there, but it is no longer a current diagnosis. :-)

Karsen has his hearing test this morning. I'm ready to get some answers and see if his hearing is at all a contributing factor to the lack of speech. 

Tonight the boys are going trick or treating (a small neighbor hood) and then going to a trunk or treat. Karsen is going as a monkey (fingers crossed that the costume fits him), if that doesn't work out we are going to do Clark Kent. Put a super man shirt under a white button up. I figured it was a perfect fit with his glasses. Karter (Karsen's older brother) is going to be a power ranger. I always envy those moms that come up with these super cute matching, or family costumes but that's just not me. I will be going as a mom and I will admire all the cute costumes out there. ;-)

I hope you are all having a fabulous Halloween. If you are handing out candy keep in mind of the many issues some kids may have, some may be non verbal, some may have a sensory disorder, there is so much more. I know tonight might be hard on Karsen and I can only hope and pray people are understanding. Be safe, check your child's candy (steal a few for yourself), and never take your eye off your kid for one second in crowded areas. Ok enough mom talk. Happy Halloween!!!!!

Tuesday, October 29, 2013

Hearing test

We heard back from the audiologist already! Woo hoo! Referral work went through fast (unlike the Botox! Grrrrr) and we got in for an appointment fast, this Thursday. I'm anxious to get the results but not nervous at all. Whatever the results it won't change a thing for me, just might give me more answers. I talked to our gal in charge of Karsens medical chart and found out our ENT (the guy sending the referral paper work for the Botox) forgot an extra form that has Togo with it. Seriously?! Yet another thing to put it off another week. 

We still haven't heard back from our neuro for the EEG results so I'm going to pick up the phone right after I finish this little up date. Fingers crossed and praying they didn't find anything. I HATE seizure meds and all their side affects. 

Today we went to a friends house for a play date and decorated pumpkins. Karsen wasn't in the best mood and was crying about nearly everything. He did however have fun painting his pumpkin for the brief five minutes (if that) that I got him to sit down and paint. It was nice taking a break from our crazy life to just go to a play date. Thinking we should plans these more often so my kids can have some fun with their friends as well as me! 

Here's some sweet pics from today.

Karsen's pumpkin was the biggest one (fresh from our garden.) Karter's is the one with the green eyes on the right of Karsen's


Are you ready for Halloween??? It will sure be fun watching Karsen be able to walk to go trick or treating. I remember not being sure if he would by now. Boy did he shock us all. He's a rock star. So proud of how far he has come!