Spent

There are a few things I feel I need to express about my previous post...

It was written with raw emotion.  Please forgive me for not proofreading the post before I submitted it.  By the time I reread it, there was so much traffic on the blog that I didn't feel like I should edit it or take it down.  So it sits where it is, bad grammar and all.  ;)

I wrote it because I needed someone to understand.

Someone who didn't make excuses for the way we were treated.

Someone who empathized.

Someone who could help.

I have had a few friends who have tried really hard to help me through this.  They have given the best advice they could.  They have been great friends.

But, they didn't "get it" because they don't have a child with special needs.

Or, they didn't "get it" because they have children with special needs, but they are not members of my church.

Or, they didn't "get it" because they do have children with special needs, and are members of my church, but they have never experienced anything like this before.

Steven and I have really been so alone and lost.

For four months.

We have had tons of support since I posted about our trials and we are extremely grateful.

Our Bishop has reached out to us in a perfect and Christ-like way since I posted.  We take great comfort in this.

It has been four months of hurt though, so it will take some time to heal.

For now, we really don't know where to go or what to do.

We are still lost.

We just want to go to church.

The Church of Jesus Christ of Latter-Day Saints is a perfect church.

The spirit is undeniable.

We have witnessed lots of miracles in our church, many of which included Leah.

When Leah was born, shortly after her diagnosis was given, Steven and another man from our church gave her a blessing. They laid their hands on her head, pronounced a blessing upon her in the name of Christ and by the power of the Priesthood which they held, and blessed her. I don't know what that blessing said.  I wasn't there when they gave it.  What I do know is that before the blessing was given, the NICU was full of unhappy babies.  Most of the infants were crying and the nurses were stressed.  When the blessing was pronounced, the babies stopped crying.  Instantly, the NICU was quiet and it remained that way for the duration of the blessing.  When it was over, the babies went back to their tears, it became loud again, and the nurses were back in the weeds.  The nurses used to love to talk about this with me.  When the NICU was especially rowdey, they would ask if Steven could come back and do it again.  It was a miracle.  A small and simple miracle, yet a miracle all it's own.

I can not deny my church.  It is a church of love.  A church of miracles.  A church of Christ. 

It is a perfect church.

It is also a church of imperfect people (including and especially, the Sones').

But the pain we've experienced because of imperfect people is also undeniable.

There is no pain comparable to the pain a parent endures when their child(ren) are hurt. 

Leah was not "hurt" per say, but just because she doesn't know she was being discriminated towards, does that make it ok?

It is my job to defend and protect her.  Steven and I were given the callings of being her earthly advocates.  We are to fight for her as hard and as long as we have to, with anyone and anywhere we have to.  We were called to protect and nurture her.

We advocate for her today, on this earth, with the hopes that she will advocate for us in eternity, when we have all left this earth and we meet our Heavenly Father.

My church teaches that children who have special needs, especially cognitive delays, are perfect.  They are so perfect that they don't even need to be baptized (although they can if they want to).  They are literal celestial beings on this earth.  There is nothing closer to perfection then a child who has Down syndrome.

This is my church.

We could visit another ward (and have been), which would teach the same things as the ward we belong to now does.  But we love our ward.  We love the people in our ward.  We love the friendships and the memories of our ward.  We don't want to leave because of a few imperfect people who make really bad choices.

We're also spent.

I've cried more tears in the past four months, then I've cried in years.

Our testimonies have been beat up but we've been fighting as hard as we can to hold onto them.

It takes so much energy to not let yourself fade away.

It takes so much energy to try to force people to hear you.

It takes so much energy to try to understand how people could forget you.

It takes so much energy to not be angry.

It takes so much energy just to hold on.

It takes so much energy to forgive.

It takes so much energy to fight against satan.

And our energy is gone.  We are spent.  We give.

We have to find a way to get past this so we can rebuild.  But we don't have the energy.

And, just going back fixes nothing.  We can't and we won't do that.  We will not put our daughter in a situation to be discriminated against, we don't care where it is.  Something has to be done to fix what was done.  Ignoring it will just allow it to happen again.  And, how can we leave things the way they are?  What if another child moves into our ward and it happens again? 

But, we don't have any answers.  We can not think of any way to fix it.

Like I said, we are spent.

We have to leave it in the hands of the leaders who have the authority to fix it and we have faith that they will.

Until they do, we will be lost. 

We will be in a ward where we don't belong.

We will miss our friends.

We will still be using all of that wasted energy to hold onto the frailness of our testimonies.

I fear that we will not grow. 

We will do our best...

But leaving things left unsettled will not help us strengthen ourselves again.

I think our leaders just don't know what to do.

And, neither do we.