Friday, April 8, 2016

To my special needs child: THANK YOU!

Dear sweet child,

 Thank you for saving me.
Thank you for changing me.
Thank you for opening my eyes to a world I barely knew existed.
Thank you for helping me believe that all things are possible.
Thank you for pushing me to live in the moment.
Thank you for showing me joy in the little things.


Thank you for always trying your hardest...and for pushing me to do the same
Thank you for forcing me to stop and remember what is really important.
Thank you helping me realize how important and strong I am.
Thank you for ALWAYS smiling...
...Even during hospital stays!
 Thank you for making me a better person.
Thank you for teaching your siblings how to be better people.
Thank you for showing me who our "village" of helpers are and to reach out when I need help.
Thank you for forcing me to trust God, even when it seems like he is not there.

Thank you for showing me how to live!

I love you,


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Sunday, April 3, 2016

What I am most afraid of

There is one thought that I know is true and I am so scared. I know that others have dealt with this already and have seemed to do OK. I only hope I can be as strong as they appear to be. 

I don't think about it all day, every day...but when I do I want to cuddle up with my son and never let go.

What is this thought that I am so afraid of?

Losing my son. Having him pass away before I am ready. Knowing that at any moment he could be gone.

Some day I won't be able to look at his sweet face. I won't be able to hear his laughter. I won't be able to see his smile, except in pictures. No more kisses. No more cuddles. No more...

In some ways, life would be easier. No more fighting with supply companies. No more equipment like wheelchairs, standers, or feeding pumps. No more lifting our child. No more IEP meetings. No more fighting for inclusion, though still important for the rest of the world.

We will be left with our other 2 children that can walk, talk and eat on their own. We will also be left with a gaping hole in our hearts. A hole that can only be filled by one person, and that person will not be there. 

On good days I don't think about my fear; but when we have a lot of good days in a row I can't help but wonder when the next ball is going to drop. When our life will get flipped upside down.

On bad days I wonder if that is how it will end. Will the last time I see my baby be when he is in distress, fighting off a sickness, or watching his body being overtaken by seizures? Will I be able to be with him when he passes from this life into the next?

How does a person move on from that?

They say that time heals all wounds.
They say that it gets easier.
They tell you to take it one day at a time.

How does a person move when their heart gets ripped out?
How can you breathe when all of your air is gone?
How can you move on, when your whole reason for living is now gone?

I don't have those answers. I pray for those that are faced with questions. I admire those that can smile, even after a loss like that. 

I hope that when I am forced to answer those questions I can find the grace and strength to do so.