This is Stephanie...
Lily has been doing pretty well lately. Her only issue is the mouth sores aren't going away from taking Methotrexate. She is talking a lot since she can hear and feels better. She is playing a ton on her own, which is great to see. She is waking up a lot at night in pain, so I'm tired but it's ok.
I have been fighting with the schools and speech therapists. Lily has to stop speech therapy at 3 with TriCounties Regional Center. Lily needs to continue since she is talking but still having severe issues. Because of the horrible budget cuts in schools, they are wanting to place Lily in a full on, non-mainstream, Special Ed class so they get paid more so they can accomdate speech therapy. What a joke, right? There is nothing wrong with Special Ed. If that's what she needed, then that's where she would be. But, she is mentally and physically able to be in a mainstream class. It's so frustrating. Lily's speech will take off around other kids, and she is as smart as they come. Her arthritis doesn't hamper her physical ability much.
And, the class is in Saticoy, not close at all. I can't take her there and I sure as heck am not putting her on a bus for an hour. Not gonna happen.
If it continues, I will appeal and then make them pay for a private school of my choice since they are refusing her the care she needs. Surpringly, that's the route they suggest you take without saying it bluntly. No one thinks she needs to be in a specialized classroom or have one-on-one care, but it's what they are doing for kids with IEP's.
On a different note, I have been trying hard to stay positive with the situation at hand. I am beyond anxious to go to Philly and learn and network. I need to do all I can to be with Lily and provide the best care possible.
That being said, I have really been put into check, by myself. Britt Merrick, the pastor of the church I used to go to, is in for the fight of his baby girls life. I can't imagine the thought of Lily already beating cancer just for it to come back 2 months later with a grim prognosis. I cry when I think about it. I don't know if I'm strong enough for it. It really is a time for me to check my relationship with God and wonder where my strength is...with doctors? with myself? with superfical hope?
I don't know if I can say that I fully trust God to heal Lily, let alone Daisy. I pray for it, I really do. I just don't want to get my hopes up. I know this sounds wrong, but I really think that God is using the Merricks and Daisy to open the lines of communication with God. Before being a parent, I thought I would understand. Being a parent, I am heartbroken for them. I am at a loss for words. It goes well beyong "Why God, why?" In my heart I trust God to heal Daisy. I know God has a plan, but what is it and why? Will we ever know? Heal her God. Doctors can try, but only You can.
Perspective has been my word today. I am grateful Lily isn't worse. I am blessed that she is in as good of health as she is. I am blessed she is healthy and arthritis is treatable and not incurable. Shame on me for whinning about it. Shame on me for letting it drag me down. God is protecting Lily and I. I don't deserve it, but I see it. Perspective. Great word, amazing thought.
Pray for Daisy Love Merrick (I love the name!!!)
Pray for the Britt and Kate and big brother Isaiah.
Daisy's blog is: http://www.prayfordaisy.tumblr.com/
Read it and pray for them.
Stephanie and Lily too...