Terri's Moment of Clarity:

I have a son named Eli.  He has chromosome ring 14.

What's that?

It's developmental delay (he's at a 2yr-old level), daily seizures, respiratory trouble (apnea, which means frequent CPR), stroke, feeding issues (g-tube), the works.  He has a very fragile immune system and gets pneumonia and croup if the wind blows the wrong way.  

As a mom, I often feel like a failure throughout the day. I always feel like I'm spreading myself too thin.  

My husband asks me "Who are you?" in gesture.  "I am the ghost of Terri's past", I reply, only half-jokingly.

I decided to pull out my calendars to see what in the heck it is I am actually doing with my days.  

For Eli alone in 2008, we had 65 doctor appointments, 5 hospitalizations, 130 prescription refills, two ER visits, 567 therapy appointments (at the house - physical therapy, occupational therapy, nursing, equipment calls, etc.), 11 different nurses in- home and 1 birthday party to attend. 

Oh, and endless telephone conversations with all of his "people", from doctors to priest and rabbis...

Now I know why  my 9-year old son Noah clings to me.  I also have Multiple Sclerosis, so I have the good fortune of not remembering half of what has happened, and not remembering what I told to whom. 

BTW - If I repeat myself unnecessarily, always tell me (or anyone else with MS, if they have told you something before)!!  Don't let them go on and on if you know the story!  We need the energy. 

I also now know that I am tired for a reason, but wouldn't change it for a second if it meant not having Eli, Noah or my wonderful husband Ryan.  My family has taught me that they are always number one.  Ryan, you make my life happy and fulfilling. Thank you for everyday.  You make my heart sing.  I look forward to the end of the day, when we are both beat tired and can just stare into each others eyes and just simply "know".

Asking for help is not shameful, it's necessary.  

I have made the best friends in the world because of Eli.  I have lost some too.  Older friends have stayed true, and others fell to the wayside.  

He was made this way for a specific reason. 

His pain and agony, I don't understand. Why do babies have to suffer so? His disease, this specific disease (ring 14), I understand.  I only hope I meet more people who can hold me up as I get older. 

God bless all us parents.  No one knows what we go through in 24 hours with our angels.  

Remember though, it's worth it. 

But you knew that. 

God Bless, 

Terri Granard