Wednesday, April 21, 2010

What is worse than knowing...

Not knowing. Is it easier to grasp things if you know what is to come? I think it is for me. I think it is the struggle of not knowing how many more steps lie in the journey. Is what is being done the LAST thing being done....

All along, I think I've felt like life would return to a relatively "normal" existence once that trach came out. There was the time waiting and watching and praying. Close the palate and then we can attack the decann process. Get the trach out and we can work on feedings and speech. That is the way my mind saw things. But each time, there is a twist. Palate can't totally be closed and that affects the soft palate which affects speech and swallowing....get the trach out and the stoma doesn't close. Go to close the stoma and well, we know how that turned out. Then there's the NEXT many times will have to be performed?? Is it permanently a solution?? How many more times will she have to go through this? Why? Am I not changing and growing in the Lord? Are my prayers not directed in the right manner? Will she EVER speak, will she forever be non-verbal. Can she ever eat normally?? I wish someone could just open up one of those handy little charts like they have for "normal" kids and show me the path.

I know God, and He is faithful. I know He sees us through this all. It is just my human brain that can't wrap around the NOT knowing.


  1. I know what you would be nice to know what lies ahead. God knows what's best for all of us and sometimes going through the hard stuff makes us lean on him so much more. Sending you tons of hugs and prayers!

  2. Sending big (((((HUGS))))) to you and lillian. It doesn't seem fair for her luck has to be around the corner.

  3. Not knowing is horrible indeed. I promise it will get better. Sometimes it seems so far away, or you thought it was better, than gets worse again. I remember thinking Jax is finally getting better. Than we had to trach him. Now he is a lot more work, it will get better!

  4. Hang in there sweetie!
    Hugs and prayers!! Always!!