Tuesday, August 24, 2010

Today is a good day to celebrate my child

When you have a little kid with special needs
time passes by agonizingly slowly.
You are always waiting...
wondering when your child will do things.
You can't even imagine
that day when your child
will be walking or saying words
because you are mired in the delays
and the expert appointments
and your own distress.
When, you want to know.
You go through life
not quite believing this is your life,
trying so hard to be a cheerleader
and to cherish this child who needs
you so much
even as you cry in the shower
or in the car
or wherever.
As your child grows older,
moving at his pace, not yours or anyone else's,
you grow more patient
and less anxious.
Your child makes progress.
Real progress.
The sadness is less sharp.
And if things don't happen,
you are not crushed
because you know now that
someday they could.
There is no timeline.
Or maybe they never will
but you have a healthy amount of
acceptance in your heart,
and it keeps you strong.
And most of all, you have
an incredible child, and you know it.
But then one day you realize
that maybe you haven't been celebrating
as much as you should. You see a photo
and realize just how grown up
your child is getting, that the years
are flying by and wow, he sure
has come a long, long way.

This is that photo.


  1. Ellen

    funney my mom and I were talking about this very topic of this post

    For a brother and sister post why not try to sign max up for cub scouts I know 2 boys with disablites who do them and one will be a Eagle scout.

    For Karite I would say that Judo is a better fit for special needs I did that instead and wish i countiued it

    try asking the people u sign S up if they will take Max too

  2. What a beautiful post! I long to be where you are!

    Max looks so grown up in this picture! WOW!

  3. This is a lovely post. I appreciate your honest voice and insight. Thank you for sharing.

  4. Great post. You're right sometimes it feels really good to let go of the worries and appreciate how special your child is and how far they've come.

    Thank you for raising awareness on kids with special needs. You have an award to pick up on my blog. http://www.sueberrylane.info/drupal/content/awareness-wednesday-award

  5. That was very well said, and I'm stealing it and putting it on my blog (giving credit to you of course). My son just started Kindergarten this week and your blog post just summed everything up, it was perfect.

  6. Yes, yes, yes! Once again, you took the words right out of my mouth, and said them better than I ever could. Go Ellen! Go Max!

  7. This was wonderful. Thank you.

  8. What a wonderful post! My husband and I found your blog when our son was still in the NICU. Your blog is so refreshing because it is both honest and hopeful.

  9. Wow, wonderful! That was just perfect for me to read today, thank you.

  10. Achingly beautiful, Ellen. *sniff*

  11. Miniature golf! Awesome! Great post today. Thank you.

  12. Oh my god, Ellen, I just don't even have any words. Well, maybe perfect, beautiful, heart-achingly right-on.

  13. Everyday is a great day to celebrate Max - he is amazing. I can't believe what a big and handsome boy he is - wasn't he just a chubby little adorable baby? I am also celebrating his progress - I am so proud of what he has accomplished and his determination to keep trying to do more and more.

  14. Aww May God Continue blessing you and your lovely family..You have a wonderful heart! :)

  15. Ellen,
    Wow. Thank you for this post. It's even true for me. Sometimes I forget to celebrate for myself, instead of trying to figure out the whys and whens. :)

  16. What lovely poetry!

    He is growing up, isn't he?

  17. I have to keep remembering this! Right now our daughter is doing really well with her CP like symptoms. Unfortunately, her "issue" is most likely progressive...neurologically speaking. So in addition to the "waiting", we have the "wondering". Are things going to get worse? If you go by statistics, yes they will. It probably will get a lot worse, medically speaking. But sometimes progressive things just "stop"...and no one (docs included) know why. So we hope that "this" stops.

    That being said...recently Sam has had a nice progression of skills...we don't know why or how...but we are living day to day, and enjoying every moment.

  18. SO TRUE.

    Thanks Ellen. Sometimes life goes by so fast, with all the planning, therapies, equipment...you don't get a chance to stop and just ENJOY our children.

    And, just for the record...everytime I see something purple, my next thought is Max. :)


Thanks for sharing!