Saturday, January 28, 2012

I CAN'T...

     What a title, right?  Especially when we are in a day and age when "can't" should NOT be an option for us nor our children.  I've had this on my mind for a few days.  I'm always hearing other moms talk about what they can't get their children to do, how they are constantly telling them to go do this, or go do that. I hear them talk about how it's hard to get them out of bed for school in the morning and how they just won't shut up, clean up or whatever it may be.  I sit back and reflect what it would be like for ME to have to constantly stay on Kerstin about getting dressed, taking a bath or cleaning her room.  How it might feel to tell Kerstin to be quiet. I can't!

     I can't tell Kerstin to get up and get dressed, I have to do that for her.  I can't tell Kerstin to clean her room, she doesn't mess it up, even when her cousins visit, they clean it or I'll do it.  I can't tell Kerstin to go to her room, unless taken, she's not able to voluntarily. I can't tell Kerstin to be quiet, her coos, aahs, babbles and laughter is music to my ears!  I could go on and on listing the negative I can't's...there is no point in that.  After 10 years on this journey, my life has changed for the better.  My eyes, heart and mind are opened to new and challenging things.  I've been forced to learn about things I had once never given a thought. For that, I am THANKFUL to God!!!

     There are some things that I know I definitely can't have...I can't let life go by for Kerstin and myself! I can't let or allow my daughter to be sheltered from LIFE.  I can't let Kerstin's disability stop her from being a child.  I can't let society and certain "professionals' tell me what's best and right for my child.  I can't let negativity and ignorance keep me from enjoying my daughter and her enjoying LIFE.  I can't let anything or anyone stop her from making strides and progress!  I can't let a diagnosis determine her boundaries...the possibilities are is to be lived and enjoyed!!!

Monday, January 23, 2012

Weight...among other things!

Happy New Year!! This is the time of the year when we start seeing all the commercials promoting diet plans, exercise equipment,  quick weight loss pills, shakes, sprinkles, etc...  We've all seen them, and most of us adults are tempted to try them because we need to or just from the mere popularity of them.  Some of our children could even benefit from a form of weight loss that is healthy and for life not fad.

My little one is the complete opposite, and on a mostly liquid, soft or puree diet; we've been on a battle with weight for some time now! God knows I'm doing my best and will continue to do so.  It just seems so frustrating when it seems as if my best isn't close to being enough.  In my eyes and mind!  In all of this, I can say that she has gained 1 pound from her December check to the January weight check.  I am so thankful to God for that, it just doesn't seem like it's enough for me though.

 It seems that way because we've had to deal with the development of a pressure area on her rear.  Due in part to the weight loss and a bony prominence! You don't know the tears I've shed in light of this. We've had to go get the cushion in her wheelchair "feathered" and cut to have a softer spot.  Her position is changed every so often, she's kept dry...things I was doing and it still happened.  OT doesn't want her seated on a "doughnut cushion" because of the risk of pulling and causing even more irritation.

Through all of this, we're still prayerful and very trusting that tings will continue to work in our favor.  Kerstin WILL continue to gain weight, the pressure area will clear!  I am so proud of my daughter and love her dearly!  She is making great strides at work on her Dynavox...had to treat her to something from her fave store, Target!

Tuesday, January 17, 2012

A message from Kerstin! ;))


I’m a member of the Junior Leadership Team at my school and in a few months we will be embarking on a trip to our nation’s capitol.  This 5 day 4 night trip will include tours of the MLK, Jefferson and FDR memorials, the U.S. Capitol Building to meet some of our representatives, an outside tour of the White House, Arlington National Cemetery, the Washington National Mall and other sites.
This trip will give us the opportunity to see firsthand monuments of people that have done extraordinary things to get our country to where it is today, and to also see the places where our lawmakers work on our behalf.
This trip takes place at the end of April and the cost is $550.00; it covers the cost of my travel, room and other expenses.  I am asking for your support in making this trip possible for me. Your generous sponsorship would be greatly appreciated.  Whatever amount you are able to provide would tremendously benefit my educational experience.
You can contact my mom, Mattisa at  to let her know of your generosity! You can also make a donation via PayPal, at the "Trip to D.C. Donate" button to the left.

Sincerely yours,

Kerstin &