As iron sharpens iron

The title of this blog post comes from Proverbs 27:17 "As iron sharpens iron, so one person sharpens another"


Some days this journey feels SO lonely. I can stand in a room with people all around me and still feel like I am the ONLY person on earth that is in this place. What I mean by that is this...there are no books, no directions, no plans, no "this is what you should do" when you have a child with special needs. Parenting alone is difficult. Parenting a special needs child takes more than you can imagine. Finding the strength, courage, will, determination, and FIGHT to navigate the roads of this journey are some times filled with uncertainty. Constant questions in your head...
"Is this Doctor right for her?"
"Why did that therapist do that?"
" Will this help her in the long run?"
"Am I putting her through so much pain during tests?"
" Should I stop what I am doing?"
"should I do MORE?"
"Should I fight harder, beg for more and push her until she gets "where" she needs to be?"
"Do I allow her to be a kid and stop or limit therapies, tests, procedures, etc?"
"What about......"

And the list goes on and on and on...EVERYDAY!

There is never a break or a "YES! This is it. THIS is the right thing for Lilah." I am the type of person who is always thinking and researching and wondering if I am doing "enough" to help my child.

While writing this blog I have met some wonderful "friends", made connections, learned from others, but I have also gotten some comments here that have been PAINFUL, hurtful and mean(even after changing the title of the "comments" to "generous words of hope"). But, nothing in this journey is easy, and when I open my heart for the world to see...someone will not like it. Many probably dislike it a lot because I speak the truth. I quote scripture. I believe in God. I believe that Jesus is my saviour. Then there are those who write me emails that are little words straight from God to let me know HE is proud of me for telling the truth during my journey with Lilah. Telling the truth that I have amazing days, with some very painful moments.

I received an email the other day that I would like to share:

Hi Katie,

I've written you before. My daughter is 4 and totally blind. I came across this quote a while back and have had it on my fridge ever since. It has helped me through so many hard times.

"I am grateful for the progress, trying to learn to see God in the pain, and hopeful that I can become who God needs me to be for my family through the days ahead. But, for now I relish in the progress of today...even if there was pain involved."

Thank you for being so open with your feelings on your blog. I don't know how many tears I've cried with you, for you, or for myself and my Addison while reading. You have helped me to not feel alone in this journey we are taking. THANK YOU!!!!!

Kathy

WOW.......

See, I needed those words. I opened the email, again, when I was having a hard moment. I am having surgery Tuesday and I am running around trying to find help, sitters, drop-offs, pick-ups, figuring out what needs to be done before then, etc. THEN...Lilah's neurologist's office called and instead of giving us the results, of the MRI, over the phone( as she did last year), the nurse told us that the Dr. wants to review the results with us in her office. FEAR immediately took over. I was in the middle of helping Alex, my oldest, with her homework. I put on the brave face and tried to help her and then.....the tears began to fall down my face. Nothing will change Lilah. Not a result. Not an evaluation. Not anything. She is the sweetest child....EVER! But, I am human. I am her mother. I worry. I see how this world views children like her. I know that God sent her to me to help change the world, and I trust Him, but the path and the pain...is sometimes very hard. I feel as if I can never have the truth about Lilah be for sure. First it was "she's blind", then it was "there is some sight" then it was "she has more than a VI" then it was "she's really delayed" now there might be something wrong with her brain? I would like the roller coaster to not have such HUGE dips. I can handle the ups and downs and twists and turns, but such HIGHS and LOWS. Sometimes I feel as if I am going to fall off. No consistency at all....and then, THIS is where my FAITH takes over.....just when I am at my weakest and I cry and shout and scream out of pain...God whispers in my ear, "I am here, Katie. You are not alone. I am not watching in the bleachers. I am carrying you and Lilah. I will never leave you. I love you." And THAT is when PEACE and calm overtakes me.



To Kathy,
I cannot thank YOU enough for writing those words. To know that someone out there feels the same way is priceless. To know that my transparency is helping someone else means I am honoring God. Thank you for hearing HIS call and writing me and speaking HIS words to me. I am here for you!
Katie