I feel led to tell it all, leave no room for questions, open my heart, and let you in.
Last week Lilah went back for her neurologist for a follow up. Dr. Moretz was concerned that Lilah was still not walking and only babbling some.
First Lilah will be having another MRI soon. Lilah's first MRI showed that there was an issue with her white matter and a "small corpus callosum." But, Moretz and another neurologist said that they didn't see anything wrong with her brain and they thought it was a radiologist mistake. Now, because of Lilah's delays she wants to repeat the MRI and see if the issues have increased, gone away, changed, etc. She is pleased that Lilah is improving, but doesn't understand why she is SO "globally delayed."
Next, Lilah will be seeing a geneticist in Augusta, Friday Sept. 3rd. Dr. Moretz said it would be a good idea to see if there is a rare genetic problem that is causing the delays.
A few days later Lilah had a function vision assessment. The teacher was very pleased with Lilah and said she is "so impressed with her functional vision." But she also said that she doesn't believe that Lilah's VI is the cause of her motor delays. She said, "I think there is another issue that is causing that."
I told Lilah's PT, on Tuesday, everything that has occurred and she said, "I believe that the geneticist will find something." My heart sank. WHAT? She said, "there has GOT to be a reason that Lilah does this?"( as she points to Lilah when Lilah lays her head down) Tears began to well in my eyes. I thought wait, she's improving, learning to cruise, getting stronger then I got really frustrated n my mind. I said, "you think something is wrong with her? Why hasn't anyone said anything before? We had a blood test that proved she was a normal karyotype. Why now?" I thought to myself..."she's worked with her for 15 months, we've done all these tests and NOW...just NOW she tells me that she thinks there is an issue with my baby?" To make matters worse, Lilah's OT walked up, saw me crying and Laura filled her in. Then Sarah said she agreed. She thought that there must be an additional problem. I just really don't understand why she didn't tell me before. I don't understand why no one in the medical community hasn't mentioned anything to me until now. I have been fighting, pushing, begging for tests...to see if there was anything Lilah needed...or if there were any underlying issues. I am just heartbroken...NOT because of Lilah...because I don't understand why no one will talk to me. I don't understand why it has taken them 21 months to tell me that they think Lilah has a "problem" other than her eyes. Now I feel like I have been lied to. I feel like no one is telling me the truth. Is there something, other than Lilah's eyes, that she has? I NEED to know. I need for someone to fill me in. I need to not feel like the therapists and Doctors know something I don't. THIS is MY baby. TELL ME....please, please, please....tell me if there is anything going on with her. I need to be able to help her. I need to be able to have a plan of attack and guide Lilah on her path. I need the knowledge and information. I need to know EVERYTHING there is to know about Lilah! I am her Mother. If there is an issue, diagnosis, anything....TELL ME!!
Why hasn't my pediatrician said anything?
I just don't know what to think.
What if there is another issue? Will it change who Lilah is? NEVER. Will I love her less? NO WAY!
I am just having SO many mixed emotions. Why now? what do we do? how will this play out?
If she has a genetic problem will she be able to have children? will it be one more limiting factor for her? is it one more thing for people to "make fun of her?" I just don't know. ONLY God does.
I am so weak right now. I am trying so hard to trust God in HIS plans for her. IS there a possibility that she could have no genetic problems? Could her brain be normal? Could she be ok?
I know, there is probably someone reading this who will want to say something like, "it could be worse" or " calm down , Katie, its just a diagnosis" or "stop complaining" or any other choice phrase. And you know what? I know those things. I understand them...very well. I also know that I want the BEST for my child. I know we all do. We all want our kids to succeed, live happy, problem-free, no pain, fear, issues. We all look at our kids and think, "how can I help them? and What more can I do?" Lilah is MY child and I will do all I can for her.
The bible says we can ask. We can ask for what's on our hearts. We can lay it all at the feet of Jesus. So I am... I am asking for normal MRI and normal genetics. I am also asking for strength and endurance. I am asking for TRUST. I am asking the Lord to help me trust Him in all His plans for Lilah.
I know that the Lord has the best plans for her. I know that Lilah is perfect the way she is. I pray for peace and trust.
I thank the Lord for Lilah. I thank the Lord for entrusting me with this precious gift. I pray that everything I do honors Him.
Thank you for not responding with harsh words of criticism. To be honest, I just can't handle meanness and judgement right now. I need support, understanding, and encouragement. I am human. I am having a moment of weakness.