Yesterday, Kourtney got home from school and was in great spirits. She didn't even have a nap on the way home, so I am starting to wonder if the pain meds had a lot to do with her sleepy behaviour.
I realize how completely vulnerable I make myself when I blog. I am not blogging to make people to feel sorry for us, or to attract attention. I do it because it is very difficult repeating the same story over and over again. People have a choice to follow the blog, therefore I feel if they are reading they are interested. Furthermore, I think it gives a snapshot of our lives and gives you some understanding into what it is like to have a child with special needs. One of my coping mechanisms has been to put on the front that I have it all together. I usually try to make myself look presentable, (when you look good, you feel better), and for the most part am a bit stoic in my affect. I have learned that I cannot always look like I am carrying a load although most of the time my heart is breaking. I am not looking for advice when I blog but feel honoured that you would take the time to share in our journey . . . the ups and the downs.
Today I receieved two emails from my blog followers, two very different people with two different agendas. The first one was a "tough love" email, from someone who doesn't even live close and I have not even been close to for a real long time. She told me that she needed to help me from drowning and that I needed to get out of my pit because I was dragging my whole family down with me. She expressed to me she is doing this because she loves us and concerned for our family. Her closing line was, "You with Gods help are the only one that has the power to get out of the pit.....my question is do you want out or do you want to continue in this pit......?"
Well, of course I want to get out of the pit, but this tough love aproach from a distance comes across as advice from someone who has never allowed themselves to roll up their sleeves and start help digging you out of the pit. Instead, they throw you a rope, yet they are not at the other end to pull you up.
My next email, was from someone that lives close to me, although we don't talk or see each other often our hearts are bonded as her child has special needs as well. She was having a rough time, and the only person she wanted to talk to and needed to talk to yesterday was me. I felt so priviledged especially after the tough love email. I could not give her words or advice but I could listen with understanding. She needed an outlet and the only reason she called me was because of my vulnerability through Kourtney's journey. I encouraged someone who shares my pain, just by being weak.
I have been humbled during this journey, and yes have been angry, but one thing I know is that they only way that Kourtney's suffering will make sense to me is through my weakness and knowing there is an entire army behind us cheering us on, helping dig us out.
3 comments:
I hear ya (on your blog above)
We didn't end up going to BCCH yesterday as Paige's counts weren't high enough. So they've delayed the start of her treatment till next monday.
Work has me on compassionate leave, I'm on medical leave for the purpose of EI. When you're on approved compassionate leave from work, you still accrue vacation. For EI your DR. just signs a form, and can write in some comments. I've been off of work before due to depression, so she just elaborated on that. I don't know what I"m going to do when my EI runs out though. You'd think there'd be something to help financially when a child is sick!
I stumbled across your blog a few weeks ago, and while I don't know you, I know a little about your story from seeing Kourtney at school in her early elementary years when I had kids in the same school.
I have a close family member who has a special needs child, and the mom had closed herself off and had given up doing things because she feared a lack of understanding from people. She is no longer that way because she showed her vulnerability and she found that most people were more accepting than she had thought they would be.
I can't even begin to imagine what your family is going through. Thank you for sharing glimpses into your daily life and for showing your vulnerability so that there may be some understanding. It gives us something specific to pray about.
Christi
I love you and I am praying for you. 'nuf said. Tomorrow I'll give you a hug! :)
Jenny
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