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Tuesday, October 23, 2012

Today's post brought to you by: Inchstones

My emotions have been up and down lately. There are days I am encouraged by the improvement Julia is making and the strength Hayden is gaining, but then there are days that I struggle to see the positive. Julia has been seeing Hayden's old therapist from Easter Seals. I am so lucky to have them back in my life, not that they were really out of it, but the weekly support helps. It helps that they know my family, they know me, and they understand that I have these moments of weakness.  They help me see the beauty in little inch stones and embrace those joys. 

I have not been sleeping well over the last few days. I cannot seem to turn my mind off of the pending microarray testing that was completed on Julia on September 27th.  The thing about these tests is that I endure weeks of waiting. This test in particular takes three-five weeks to run the DNA analysis looking for deletions or duplication's. I do not know why I cannot turn off my mind. I do not anticipate anything coming back  for Julia since Hayden did not have anything show up on his analysis a few years ago. Still I worry and I wait. However, even if something does show up I know that does not change who Julia is and what she will accomplish. I think what I struggle with is the irony in this all. The fact that I had a beautiful normal developing little girl get a normal childhood illness. The fact that it took away some of my worry she was developing normally and allowed me to experience a typical childhood progression. The fact that it was taken away from me in an instant. I try not to be angry or allow for self pity of why me, but sometimes I just give into that nagging little part of my brain. That nagging little part that is saying it is just not fair. 

Despite my ups and down this week we had something amazing happen today. It was a day that I needed something amazing to happen. Julia walked pushing a toy. While this may not sound huge it is so big! She did this on her own for five feet, without falling, without help. My heart was full, my eyes filled with tears as my baby girl was taking assisted steps. I also witnessed my son Hayden cheer his baby sister on because he knew that was a huge deal today. I found him an hour later helping his baby sister, showing her exactly how to pull to stand. He kept telling Julia to put her feet closer together. He corrected her kneeling telling her to tall knee. This kid is amazing! He sees joy where I miss it some times. He truly is a wonderful big brother and the best big brother for Julia. I have written before how Julia has helped Hayden well today Hayden has helped Julia. He helped her get into positions correctly and he celebrated our big deal of walking with a toy. 

Wow, how my days can go from worry to joy. I love the days with joy and I know the days with worry will become less. I know once I have digested our new normal it will get easier. But most of all I know my children will have many more amazing days ahead. 

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