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Monday, December 27, 2010

A Poor Evaluation

Yesterday was a tough day for me. Miles had his end of the year Physical Therapy (PT) evaluation and he didn't do so well. He scored a "Poor", where before he was at least "Average". He is now 15 months old, but his Gross Motor skills are at a 9 month old level. I was so sad to get the results, I wanted to cry. But I didn't. I sat there listening to our PT talk about the things that Miles should be doing better and what we can do to help him get there.

So many thoughts crossed my mind as the therapist talked to us. Had I been deluding myself? I thought Miles was doing so well! He can pull himself up and he's starting to climb up on things. He can hold his own bottle and finger feed. He can...he can...he can...."oh no!", I thought. The therapist is right, Miles should be doing so much more! He should be crawling and taking steps, at least bearing weight on his feet! He should be able to catch a ball and roll it back. He should be able to understand at least a few sign language words. He should be a few months behind, but six! Six months behind his true age?

Of course, my next thought was that it was my fault. That I haven't been practicing enough with Miles. I've been too self-involved and preoccupied with my own things to give him the attention he needs. I'm a bad mom, I thought. And the thought after that was of one of utter frustration and and hopelessness. I thought, I can't do this, I'm too exhausted, it's so much work, why can't we just let him be, he'll catch up eventually. I went on to feel angry at all the people who have "perfect" babies yet still complain all the time. I felt angry at my situation and I felt sadness for Miles. By the time the PT left, I mustered a fake smile as I wished him a Happy New Year. Miles was asleep on my shoulder, my sweet little angel, snoring away, oblivious to my pain.

I spent the rest of the day oscillating between all my feelings: sadness, anger, frustration, guilt. Everywhere I went I saw "perfect" little kids doing all the things that Miles still cannot do: talking, walking, eating big chunks of food. It fueled my anger at others and at life. I felt rage inside and I let myself rage. I wanted to see how far I could take it. How long would my anger last? See, I was curious because lately I have been perfectly happy with my situation. I love Miles so much and I am learning daily about him, me, humanity. And I love this type of learning, it's powerful and exciting and makes life worth living. So I was curious to see how long I would wallow in my "K hole". As it turned out, it didn't last more than a day.

I wanted to wallow in my hatred for a bit, but it was difficult. Miles made me laugh and he reminded me of all the things that he CAN do. Miles doesn't just pull himself up to stand, he pulls himself to stand so he can look through his trunk of toys or so we can help him climb on the couch with us. Miles can look at himself in the mirror and recognize himself and laugh hysterically for minutes on end! Miles can feed himself with his little fingers while leaning back on his high chair with one foot up in the air. (He's very flexible!). Everything that Miles does now, was once a challenge we didn't know if he would achieve. But he has achieved so much. And he will walk one day. And he will talk. And he will run and possibly play the guitar and he'll swim and maybe even ride a horse on his own. He can do it all, on his own time, just like any kid. But unlike most kids, "his own time" will take longer. And we'll always have to bear the endless questions from strangers or even friends who just don't know enough about D.S. We'll have to explain that because he has low muscle tone, it's going to take him longer, but he'll do it.

I went to sleep a bit unsettled, a little sad. But I wasn't angry anymore. And today I feel like the luckiest woman alive again. Lucky to have the life I have, to be on the path I'm on and not know where it's going to lead me!


  1. You always inspire me! Thank you for your honesty and your heart. XO

  2. I love reading you Loli. I love you and I love SMiles for being your son.
    always there for you,

  3. woow Loreni, How amazing that you got to know that its alright where he is. its perfect. we will grow, he will learn on his own time and in his own way. he will teach us all a lot of things that us "perfectly born" dont have a clue of. cheers to you Loreni for taking that hatred and transfering it to what is really present and beautiful, MILES a very very special little someone that is here to share and push you to grow and see things througha different and unique lens. many kisses to you and hubby...Miles and the baby girl in the tummy. you rock!