Life is a Journey

My son, Alex, is 3 1/2 years old. He was diagnosed with Mowat-Wilson Syndrome at 5 days old. My son, Aaron, is highly active, extremely creatively bright. My daughter, Sydney, is verbal, talented, and snarkily beautiful. I have so many thoughts about life.... they don't hear me now.... maybe they will someday. :)

Wednesday, January 25, 2012

Are we famous?... LOL

I spent most of Monday sitting, cleaning, and playing with Alex.  Just exactly what I wanted to be doing, and where I wanted to be.  We made a trip to the grocery store and the library.  Thankfully, M gave us her cart cover because I am pretty sure Alex ate the entire handle of the grocery cart.  Two more listening sessions down, and I can't wait to see what J says at OT therapy Thursday.

Today is a new day and busy we must be.... During Alex's therapeutic listening time today, Alex held on to a vibrating toy for several minutes.... and he colored.... and he played his xylophone!

We followed that up with some down and dirty PT time with D.  She worked him hard.... climbing up onto surfaces, pulling up to standing.  One thing I will work with him on in the next week is getting into a lunge.  From the lunge position, he can weight bear onto the bent leg to get into standing.  The hard part is that both legs like to move together.  He can break this pattern (for instance he crawls instead of dolphining) but it is difficult for him to do.... the whole motor planning thing.

Today is Tuesday and words can not express fully how much I love my family.  The Magazine... Parenting Children with Special Needs came out today and there we are- Andy, Alex and I... on the cover.  It's funny because I don't consider our family to be an inspiration like the article grouping says.  I consider us to be lucky, loving, strong, determined, dysfunctional, and perfect for each other.

Last week, Tuesday, I took Syd to her therapist appointment.  We are trying to get to the bottom of why she is reluctant to be a contributing member of our family.  The idea was thrown out that maybe she holds some resentment toward Alex.  She hasn't been the same since.  Even when we first started trying to figure out her quirks, she has never reacted as violently as she did last week.  For two full days, she hid in her room.  She refused to talk to me.  Finally, I brought her a cup of hot cocoa and we had a heart to heart.  The crux of the matter is that we were insinuating that Syd wanted "normal".  We implied she didn't love Alex.  She felt like we didn't understand at all.

I tried to explain, again, that we all hope for "Italy".  We all hope for normal healthy children.  Didn't she feel sad when she looked at her friends' families.... everyone "normal".  She shook her head and said, "Not at all."  I said, "Syd, there are some days when I see little children Alex's age, doing normal 2 1/2 year old things, and I get sad.  I wonder why?  What did I do wrong?  Why can't I have what they have?"  She responded, "Nope, not me.  Alex makes me stronger.  Alex makes me love more."  Fighting tears, I asked her, "Syd, are your friends teasing you about Alex?  Are they making fun of him?"  She said, "Mom, you know Sarah, Ginger, Mason.  You know how they all love Alex and they fight over who gets to push him in the stroller.  He is our team mascot.  He makes everyone smile.  They all love him."

Which brings me back to the article.  If you have a chance to read it, you won't be surprised by the story in it.  This is Syd.... her heart has the softest spot for those who are unique.  She rejoices his successes much like I do.  When he is sad, she is there.  When he is in need, she is there.  When he needs motivation, she is there.  When he needs giggles, she is there.  When he needs a sister, she is there, and will always be there.  A mom couldn't ask for more.

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