Friday, April 8, 2016
Sunday, April 3, 2016
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.
Wednesday, March 2, 2016
- He is getting bigger/older and his body is stronger
- We have gotten better at seeing symptoms and adjusting to his needs
- We have nurses whose job is to monitor him and provide treatment
- God didn't think we needed to be there (I usually see other peoples needs and help them in one way or another, even if it is just noticing that they are crying and offer a hug)
- We have become really sheltered from the rest of the world because of the younger kids and weather.