Tuesday, October 25, 2011
I attended our local special needs support group for the first time a week ago. It was interesting. I left feeling just as "alone" in this walk as I usually do. Most of the families represented had children with Autism and the conversation didn't really get past talking about gluten free diets or their kids not leaving their clothes or shoes and socks on. There was some discussion about sleepless nights...I could identify with that to the extent that I've dealt with it, but not bc Lillian was up playing in her bed..but bc she is sick, vomiting, running a fever, or needing medications. I decided I would need to go at least one more time before I gave up on it. The day after the meeting I had a chance meeting with one of the parents ,who was rather quiet at the meeting, in the post office. We had a nice long conversation, and I felt so connected. More connected than I had sitting in that group. Yesterday, if you read yesterday, we got a new diagnosis for Lillian. It really was good information to have. I don't really like it. But, at least we have another piece of the puzzle. It is always hard for me to digest bad news. It is an answer to prayer, but still bad news. It affects me, it makes me hurt, it makes me sad. I feel, physically, like my heart is being squeezed. Now, I have not sat around and moaned and cried and complained about it, I really haven't thought too much more about it. What does stick with me, is was what seems to be lack of support. ONE person I spoke to yesterday allowed me to cry, did not question my feelings, did not judge my heart. She understood...she understood, bc she has a child who is chronically ill and had a very difficult childhood. The bottom line, I just need to talk it out, to feel the way I feel and not feel judged or questioned about WHY I do. I appreciate words of encouragement, but I STILL need my moments....does that make sense? Any parent could attest to feeling pained over their childs' poor decisions, or a procedure that child may have to go through...I have joy and excitement, faith, understanding and grattitude for all that she HAS come through and endured and I see how greatly God has protected her through it all. I talk to God about it...ALL of it. I AM only human. I have my earthly thoughts and am discouraged from time to time. Just let me be. You have my permission, if I sink into a pit of despair, to drag me out of it....but I have to process, I need to process. It brings new light to the support group. While I didn't find myself completely at ease there, I think I will continue to go because I can just be and people will understand and NOT judge why.
Monday, October 24, 2011
Monday, October 17, 2011
Just got the call from ENT. Lillian is scheduled for her tonsilectomy on November 1. Pharygeal flap surgery to follow on December 20th. These are the steps we have prayed over and hoped to happen. Now we have approvals and dates....and I'm already feeling the nerves kick in. These appointments, to me, are kin to her palate repair and decannulation. It seems so much rests on these important surgeries. Then, my mind starts...are they THAT important? These are the issues that have to be addressed to hopefully move forward. Right. That is the mantra...right? It pulls at my heart to know I am ultimately the person making these choices for her. Do I have to put her through these surgeries? It seems that it gets harder every time we face surgery. I know---believe in my heart this is the direction to go...but it just doesn't make it easier for me to think about.