Yes, it has been a long time.
Yes, I have wanted to post many times over the past 4 months.
Yes, I want to get everyone up to date on things.
But, life is too busy for me and it seems like such a HUGE task that I have turned away from posting what was happening because I felt that I needed to update everyone. I have decided that although I hope to post about some of the adventures the past few months have brought us, I need to just be free to post as I need and am able to.
So, that brings us to today...
Jordan is now in school 2 days a week. Some days I am glad...some days I wish she was here everyday. Days like today...I wish she had been in school.
Over the past few weeks I have come to an difficult decision about parenting my special daughter. I prefer to not take her in public. I prefer to keep her at home or in a place where I don't have to worry about her meltdowns, screaming attacks, temper tantrums and overly active behavior. I prefer to not be judged by my daughters behavior.
That may seem harsh to you.
My guess is that you don't have a child that is often completely uncontrollable. A child that will randomly start screaming at the top of her lungs for no reason...and then realize that she likes the sound and the way if makes her feel and she will keep doing it over and over and over and over...even though you are just trying to finish your grocery shopping. Or a child that has the inability to swallow and yet has a HUGE desire to eat, thereby, making your family night out at a restaurant a horrible experience because she keeps grabbing everything that is within arms reach and if you try to take it away she throws it...even shattering a plate on the floor. Or a child that will throw herself on the couch...or the floor...or against the wall because it feels good.
My life is not normal. My life is challenging. My life is exhausting. My life is full of blessings that no one will ever understand.
I wish I could see the blessings more clearly through the screaming and stress.
I wish I could understand why she does the things she does and what I can do to help her.
I wish I could get rid of the guilt I feel for just wanting a break from her.
I wish...
1 comment:
Hi Karrie, This is Stephanie from Hope4Haven. I just got your Hello and came over to check out your blog. I just want to say how much I can relate to this post!! And I know other people just don't get it. Haven has gotten SO MUCH BETTER but we lived a lot of years inside this house because I just couldn't do it all AND take her out to melt down. People think it's as easy as discipline and better parenting....yeah, they don't have a special. HUGS!!!!! I hope it will get better for you guys too!
Thank you for contacting me! I LOVE to have more tubie mamas in my life. I don't know what I would do without the support! I saw you already found the feeding tube awareness board on fb, I was def going to suggest that one!
I will email you more later. Just had to post here because I know exactly what you're talking about! HUGS!!
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