
You mean to tell me nobody goes down a water slide in their wedding dress?
Ohhh, but it was so much fun
Life was perfect for me.
I found the love of a lifetime, was getting married, completing my Doctorate, buying a ‘real’ home, adopting a mischievous puppy and a furry lil kitten.
My dreams were coming true one by one.
Never in a million years did I imagine my luck would run out.
On January 5th 2010, it did (or so I thought) because that’s the day my vibrance, spontaneity, and spunk - died.
I was unsure if the real me would ever return.
I hid in the corners of crowds, no longer seeking to be the center of attention. I spent my quiet moments secretly crying. I would go grocery shopping at 5:30 in the morning and walk with my head down to avoid conversations with anyone. This is sad because I used to be such a chatter box. I used to love up on any of my friends kids but during this dark period, I was filled with so much anger that it was just easier to avoid them.
Basically, I represented the true meaning of the phrase, “Fake it till ya make it.”
Guess what ya’ll?
I’m starting to make it.....Finally.
My weekend started with this family moment. A real family moment with a happy mommy, a loving daddy, and laughing kids.
***VIDEO HERE***
Which means we sat down and had a family dinner, the four of us (plus two doggies and a cat).
Before bed, daddy read to all of us, Alice in Wonderland. While Maddox didn’t understand much of the story she was excited about the rabbit. The best part of the evening was when Daddy, Mommy, and MacGregor walked Maddox down to her room to put her to sleep. We all kissed her goodnight and then tucked MacGregor in his room for the night.
This is the way it should be.
I love the comfort of my own home were down syndrome doesn’t exist.
Yes, even though I am starting to ‘make it’ I still worry about the future. Will people still love Maddox when she is 16 and continues to watch Barney? How will I have the talk with her that she can’t have children? Will she live in a group home, and will her best friend be her case manager?
I am learning to live more in the moment and worry less about the future because I have struggles to overcome today and tomorrow too....Like her upcoming IEP, her outpatient therapy running out, and should I sign her up for preschool?
Ugh....I can’t be worrying about what happens 16 years from now AND what happens 16 hours from now. I’ll get grey hair waaay too fast.
People tell me that moms worry about their kid regardless of if they are ‘normal’ or disabled.
I have to say I disagree.
I have one disabled child and one normal child.
I can tell you I don’t care when MacGregor rolls over because I KNOW he will. I don’t care how much he eats because he is ON the growth charts. I don’t care how long he sleeps because his internal alarm clock actually WORKS (Maddox’s hasn’t from the day she was born).
Ok, sorry, this post was really intended to show you that the real me was making a comeback but as you read, you can notice that will I am starting to ‘make it’ there are still day to day struggles. It’s part of the emotional roller coaster I ride. I wake up happy, blink, and then something will pull at my heartstrings.
For example, last week, I had just accomplished something huge at work and someone comes up to me and says, “Welcome back, we missed you, I know it is tough.”
He knows it’s tough?
Really?
He knows what it’s like to walk a mile in my shoes? He knows what it feels like that the baby sitter gets to take Maddox to therapy everyday and her own mom can’t be a part of helping her become her very best?
He knows how it feels to work months on a skill and miss the shining moment because I was working?
He knows how hard it is stare into the eyes of a child that you are still trying to accept? All while this same child stares back at you with unconditional wholehearted love....
Grrrr.....He doesn’t really know what tough is.
Yes, I went from happy to sad in seconds. There was a time in life when I was nothing but happy and I patiently (ok, not so patiently) wait for her return. I know she’s getting closer.
In the meantime, I just have to keep building on the good things.
Don’t know about you but I need to see that giggle video again!!!!
***VIDEO HERE***