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!
Nothing could EVER alter my love for her.
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.
8 comments:
Hard post...brings back so many memories for me.....
I think with children like our's the professionals have a 'wait & see" attiude. Sam was a bit younger when we all got on the same page and said there had to be something more going on. With Sam, we're pretty sure it's Peter's PLUS along with some brain damage in his white matter. What causes what, we just don't know...
It's hard. I'm sorry you're facing this with her, to me she doesn't seem that delayed on the video clips and I hope and pray that she will catch up. If you ever want to call me feel free to. I can give you some details of some of the things we looked at because of the Peter's.
Take care & God be with you all,
Yvonne
Precious Katie,
I understand your heartache. I sit here crying over your hurts. The fears of "not knowing" I think sometimes can be harder to deal with than knowing. Know that I love you and I am lifting up your precious family. Lilah is such a gift from God. Look at all you have learned from her. Look at what others are learning. During this difficult time you have to cling with all you have to God and know HE will provide the answers in HIS time. I understand wanting them already. You are an amazing woman and God is using you. You are a wittness of His love everywhere you go. Lilah has touched my heart in so many ways. She has one special family. God knew what he was doing when he gave her to you. Stay strong beautiful lady. God has never left you nor will He ever! Love you!
Love,
Christy
I know your pain Katie and I am praying that you find your answers soon! We have some answers but we are also still searching. I don't believe my son's one genetic condition is responsible for all of his delays but that's why we are still searching. Are you taking her to a developmental pediatrician? We are on the waiting list here.
Katie,
My heart hurts for you. Coming from a medical background, as far as your pediatrician, and OT/PTs, they might have suspected something else, but didn't want to tell you because they weren't even sure what to expect. Not that this is an excuse for them, in all honesty, if they suspected something even without knowing they should be open and honest with you. They are human though, you've got to remember that.
I will be praying for normal MRI and genetics study as well. As a mom I know how deeply you want everything to be ok. TRUST in God's power! TRUST that HE is in control (not you, not the neurologists, not the pediatricians) and that HE will carry you and your family through this struggle. I love you! Please let me know if you need anything!
Stacy
Sometimes, on somedays, life with special needs can be overwhelming. I am praying and trusting that our faithful Father will fill you with the growth and peace that you seek through all this.
Katie - I can't seem to find the words express coherently the thoughts that are going through my head and the emotions that are going through my heart. Please know that I love you - all six of you - and will continue to pray that you find the answers you so desperately seek. I know that you won't rest until you do!! I pray for peace for you, happiness for the four precious angels God has blessed you with, and understanding for the wonderful man here on earth who has been by your side through your journey.
I love you! You inspire me to be a better person!
Love,
Michele
Praying for you. I see both sides. The therapist side, and the mom side. As a therapist, we can't go around telling parents it could be this or that when we haven't known or worked with a child long and so many things we consider turn out to be wrong after we get more info. I never say I think there is something more without really thinking it through and praying about it. Unfortunately there are liability issues involved for us too. So, I can't speak for the other therapist you have but I would never seek to keep something from you I thought could help you or Lilah, but in the same turn I would not bring up something that I had not clearly investigated and had clear evidence of. We are not allowed to diagnose things beyond our specialties. I must say I am falling in love with your little girl and I am very thankful for the opportunity to work with her and some how make her life better! Every day I ask God to give me wisdom and show me how to help each one of His precious children I have the privilege to work with and I know He does. God wants and has good for all of you! I am praying for peace, comfort, and rest for you!
I cannot imagine what you are going through - I snuck over from Kristen's blog. Please know that I will be praying that you find the answers you need.....
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