"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Wednesday, October 19, 2011

A Rough Few Days

Just a little For Your Information--brought free to you by courtesy of me. . . .

If you are wanting to bless and support a family who is parenting a special needs child, kindly don't suggest that the reason the child has some specific physical problem (which has a good, solid diagnosis already, no less) is because they are possessed with evil spirits. And should you error, and mention it, kindly don't continue to try to press your point after said parents have tried to gently and kindly let you know that while they believe God is the great Healer and could choose to miraculously heal their child,  they are satisfied that evil spirits are not causing their child's issues. Ok?? It really isn't helpful . . . not at all.

We are dealing with ENOUGH ALREADY emotionally, physically, financially and spiritually. We do not need that kind of "help", no matter how well-intentioned it is.

Do I believe that there ARE evil spirits? Absolutely. Do I believe in praying and rebuking them in Jesus' Name?? Absolutely. And I have had some occasions in some of my children's lives where I felt demonic oppression and have prayed for there to be freedom for my child in Jesus' Name. Not in a loud, public showy way that would scare the child. Just quietly and privately, between God and me. And I have seen there be changes--huge changes. But there is no need to become a paranoid "demon-behind-every-bush" person. I do not believe that clear-cut physical issues that have a certain Dx that makes all the sense that can be,  are demonically caused.

So yes, please let us know you are praying that God will miraculously heal our children if it's His will. But stop there. Just stuff a sock in it, and don't go further if you truly believe that demonic possession is causing our child's physical handicaps/illness. Keep it to yourself, and simply pray. That will help us the most.

Katya's eye exam on Monday was another emotionally draining day. Paul and I took her and I'm so glad he was with me.

Basically in a nutshell, after being examined by two residents and two fully licensed and accredited Doctors, everyone agreed that glasses will *not* help Katya see better. Since it's obvious Katya does not see well, they are strongly suspecting that what has happened is damage to the nerves that convey the information her eyes see to the brain for interpretation. They said that either cranio-stenosis AND/OR starvation could have caused the damage.

Needless to say, this has been a tough thing for our family to deal with, and tears have been shed. I personally feel very affected by it as I know how poor my own vision is, and how lost and miserable I am without my glasses. It is very hard for me to think of my little girl going through life with such poor vision as she appears to have . . . Very hard.

Katya also (no surprise) needs surgery on her eye muscles to help them but the Drs said they will not even talk about doing that surgery until she has had her cranial reconstruction, because it would be an utter failure if they attempted it prior to that.

Now in the midst of all this glum news, you might wonder, was there any GOOD news? Yes, there was. The good news is that Katya does not have as major of issues with her eyes working together as they would typically expect to see in a child with her level of cranial/facial issues. They said that means she does have less issues with depth perception and such. So that is a good thing!

And as to why she is "squinching" so much of the time recently? Her eyeballs have pushed forward so far due to the growth of her brain that she is having issues with dry eyes . . . Artificial tears are what Katya needs. That at least isn't a big issue, as long as we can get them into her eyes. After her two recent experiences with eye drops at the Drs offices, I don't think it's going to be a lot of fun getting them in several times a day! Poor girlie . . .


Mike and Christie said...

Oh Poor Katya!!! And POOR YOU!!
Please tell me somebody didn't say that!!!! Ignorance is truly..... IGNORANT! UGH

nicole said...

when i look at katya all i see is loveliness..and she is so loved by god and her family and bloggy friends..hell find a way to heal her in his time and she has a lovely family to help her through it..

Leah S. said...

Oh yes, gaving a child who has paranoid schizophrenia, I have heard a lot of the old demonic thing. I'm all for casting out demons, but I'm sorry....not everything revolves around the spiritual realm. As for her eyes, I don't know if you're aware, but if we ever get Ianna home, we'll be dealing with the same issues. She has lost the vision in one eye completely and the other is on it's way out, all due to compression on the optic nerves from brain growth without having had her cranial surgeries done. I'll be praying you can move forward with surgery with Dr. Carson very soon after her scans!

Milena said...

Oh how I hope Katya will get to have her much needed surgery really soon! Poor sweet girlie!

Amy said...

Someone actually SAID that to you?? Where are they?? Let me at 'em.... ;)

Shannon said...

I'm sorry someone said that to you. It's so cruel, yet people continue to push that as if that could be the only possible explanation for the issues children with disabilities face.

I've heard it a lot myself, as that seems to be the prevailing belief about autistic children nowadays. I have two children on the spectrum and I have heard the demon possession argument more times than I can count. I have also had people blame me because I'm not a christian. "God's punishing you for your sins through your childrens' disabilities."

It's really hard not to take a general disliking to people sometimes.

Again, I am so sorry this was said to you. You and your little girl deserve a whole lot more support and compassion than that. I hope in the future people will pause for a moment and consider the situation before popping off with something like that to you.