Thursday, May 22, 2014

Losing Control

I stood there in a complete panic as images of Lydia were flashing through my mind.  I saw her for the very first time, I saw her as I handed her over for her first surgery, I saw her laying in the bed and the monitors flat-lining as she turned blue, I saw her super sick, I saw her in the car seat for the very first time, I saw her swinging in her swing for the very first time, I saw her very sick and I saw her being her typical two-year old self.  I was completely paralyzed by the chaos I was experiencing and these flashes of memories that we have endured with her.

This is not really how I envisioned our first school visit to go.  I was overwhelmed by what I was seeing and what I was hearing.  As I was asking questions and getting the annoyed looks, I became more and more frustrated.  As I looked around I became more and more panicked, knowing this is not where we needed to be.

Starting off our day, the speech therapist was not very happy that I wanted to be present.  With the medical issues that Lydia has, I was not comfortable dropping her off in unfamiliar hands.  For goodness sakes, my parents nor my in-laws watch her for extended periods of times.  We have taken a lot of flack for our decisions, but my husband and I still stand firm that we are doing the very best for Lydia.

I take my parenting responsibility VERY serious.  I believe that God has entrusted me with Lydia and it is my responsibility to raise her according to God's plan.  I understand that one day I will stand before the Lord and I will be accountable for the decisions that I have made.  I realize, I am by no means a perfect parent, but I try really hard to read the Bible, listen to God and raise her how I believe God is calling me to raise her.  I know that my husband also takes his responsibility very important and we try to work together as a team.

I realize that this is not the norm in society these days.  I know that it is a lot easier for me to drop her off and have the teachers and therapists do what they are familiar with.  However, I know that this is not what is in the best interest for Lydia.  Some days it is so hard to keep battling, to keep asking the questions, and to keep standing firm for how we want to raise Lydia.

It is so much easier with my other girls.  My other girls are not tied to a school district, they do not have an IEP, they do not need therapies.  In my opinion, three is way too early to go to school (and she seems too tiny for it!).  However, if we want to get the therapies that she needs, which in my opinion is very important, we have to.  I guess we could try to do everything through private insurance (most likely with a fight) or we could somehow attempt to pay for everything out right?  But this is where we are at and what we have to do.  I know that God is testing my faith and in turn my faith is being strengthened.

As hard as it is, as exhausting as it is, this is what I need to do.  Lydia needs the very best and I am the one person here on earth that knows the most about her.  I want to be involved and included in her education.  I want to make the decisions and I want feels as though I have control over what happens with my daughter.  I have learned several times, I really don't have any control in many things that I want, but I know that for her education I need to have that control.  In many ways I feel like we have fought too hard to get here, that I need to keep fighting to get exactly what will benefit Lydia the most.

My other girls go to a private school and it is my wish that Lydia would go to school with their sisters.  That complicates the process a bit more.  However, I was so touched when I talked to the principal of the girl's school and he said that they would do whatever they needed to make things happen.  He wants to bring in the teachers of the school for the IEP meeting so they can better understand the process, the goals for Lydia, and what is in her best interest.  WOW!  Completely different than our visit to our school district.  I want someone to teach my daughter who has the same passion for the Lord as I do, who is teaching because they really want to and who is passionate about discipline.  We have found that in the girls' school.  We want that for Lydia too!

I hate the IEP process and I am fighting it.  One, I hate it because it focus' a lot on what she cannot do.  It focus' on how far behind she is.  Two, because I feel like I have no control.  I understand that there are people who educate people with special needs and there are people who maybe know more than me in these areas.  However, there is no one who knows more about Lydia than I.  I want to be a partner in her care.  I want her team to listen and to make decisions together.  I fight it because I don't understand and I really don't want to lose control of my daughter.  She is so young and I just want to hold on to her a little longer.  Obviously, I still feel like I lost so much of her being a baby that I want to hold onto these moments and cherish them. 

I guess, once again, I realize that I have no control.  I leave it into God's Hands.  I try to do what He is calling me to do, I try to raise Lydia (and all of my girls) the way that God wants me to.  And if that means making waves, then that is what I need to do.  I still, however, need to conduct myself in a godly manner.

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