Our journey through life with hemiplegic cerebral palsy and infantile spasms

Monday, July 30, 2012

Down to only one

Today marks day one of Karsen being only on one med! He's been completely tapered off of the prednisone. It's hard to say if he's his normal self since it's been months since he wasn't on anything and seizure free. In fact he was quite little and didn't do much. So, I'm getting to know Karsen all over again. Boy does he like the sound of his own voice and he is LOUD! It makes me laugh, I remember telling Kuper when we were pregnant for the first time that I refused to have a child that would scream for fun. Ha! Not much I can do about it now. Plus, I let him do it since he hasn't had a voice for so long it's nice to hear him make noises. Oh yes, I am a sucker. 
Today I received an email from one of my fellow MOPS leadership friends, it talked about putting our info out for new moms to have so they could contact us and any helpful things to add to it as well (ex. I enjoy running, soccer, and knitting... that sort of stuff, to help new moms connect to us easier). Such an awesome idea. For those of you that don't know what MOPS is, it's mothers of preschoolers (not just true preschoolers, it's pregnant to kindergarten). We have meetings once a month (not so much a meeting... it's craft, food, guest speaker and socializing..... it's so much fun) and then play dates and field trips every month. It's a christian international organization. I've been a part of MOPS since Karter, my first, was 6 months. I'm now on my second year in leadership, which I love, it's amazing to see it grow and find many new moms that are searching for friendship, help, or God (obviously he applies to all ;-) This is my second year as play date coordinator. When I first got Karsen's diagnosis I wasn't sure if I was up to the challenge to stay the play date coordinator, but it's been a pleasant distraction and Karter LOVES going to all the play dates. So, when I read that email today and started thinking of ways that I could reach out to new moms, what to put about me.... then one simple title popped into my head; special needs mommy. Am I? Do I fit that title? Every person I have met in my life that is a special needs mom is so amazing and loving and nurturing, patient, and wise, someone I would strive to be like as a mom. Do I fit the description? Loving? ok got that.... Nurturing? I think I am... hopefully.. lol... patient? Ha! not so much! Wise?... does google count for helping on the wise part? ha ha. It's been such a roller coaster of emotions this year. And after having all the doctors appointments, the therapy appointments and all the referrals you think I would have gotten use to the term special needs. I guess it's still a shock.  I've hit the stage of acceptance with Karsen's struggles, I just hope I can meet all of his needs. I pray that I can be a perfect mom to both Karsen and Karter. I pray I spend enough time with each of them. I pray I'm that mom that inspires other moms, the ones I met before I ever knew I would have special needs child. I am so grateful and taken back that God finds me strong enough and mommy enough (woman just doesn't cover it) to take care of these two precious boys. These two miracles. May He guide me endlessly to nurture and care for His children. May He guide me in His foot steps, walk His way. Be that example for my boys. Be that example for strangers. I've already found through this first year of Karsen's life His way is so much better than my way. Why do I always feel like I have to have control of my life. When I've given it to Him... What beauty, what peace, what perfection. So, yes, more info about myself? Special needs mommy and SO proud! 

Look at my lefty grabbin on to the basket. Proud mommy moment!
Oh, and side note: Still no seizures!!!! Woo hoo!!!!

1 comment:

  1. Yes, you most certainly qualify as a "special needs" mommy. No perfection required....you do the best you know how to do because you want to, because you love your little family. That is all that is required of you. Do the best you know how to do. God makes up for the rest. Your boys are beautiful. :o)

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