Caution: Angels At Work

From Diana

Many of you have continued to ask what you can do in support of the family.  We trust and believe that God is going to provide ALL of the days needed inpatient to heal Smiles and get her on the right path of recovery.  However, God also tells us to also be wise.

I will be starting a Treatment Fund for Smile where donations can be made to help cover the costs. We all know that the family, especially Dad is very private and doesn't like to ask for help, to which I continue to say, Angels can't be stopped!   As Mom has told us, the daily care is $525.00 a day, just think about that for a moment.  This is a long process as we have already seen 35 days into it.  To cover the month of March (31 more days of treatment)  the family will have to pay $16,275.00.  Anything that we as "Angels" can contribute will be a huge help to the family.  So I will provide a link as soon as it is available with the information where you can donate to help ease, at least the financial burden, for the family.  In the meantime, if you want to make a donation now, contact me at writingforsmiles@gmail.com and I will tell you where to send your donation.    I know we are all on tight budgets but surely we can give up the cost of eating out this week or our gourmet coffee for sake of Smiles.  Every little bit will help! If you have any questions, please do not hesitate to contact me.

Spread the word and let the feathers fall!

Day 35: A New Bump In The Road

From Mom

Seven months ago when this leg of the journey with our girl began we prayed for God’s intervention. For His protection over her, for Him to give her peace. We prayed that He’d lead us to the right doctor and that we could get her on some treatment quickly so that she could move on with her summer and start the school year OK.  As the weeks turned into months and she continued to get worse instead of better we prayed for healing and proper medication and diagnosis. I remember speaking to one of her therapists back in October about the next stage of the treatment process and her telling me that it would most likely work. But, if we didn't see progress in the coming weeks we would have to start considering residential treatment. My husband and I looked at each other with the same expression. One of confusion, maybe even denial. We just never imagined in a million years having to consider sending our child away. That wasn't part of our plans. And surely, if it wasn't in our plans then God would understand and fix it so that it was aligned with what we wanted for our child. And so our prayers shifted. We now prayed for progress. The week before Thanksgiving we were at one of her therapy sessions and the therapist called me in to the room where she and my girl were talking. She proceeded to tell me that our daughter felt that she needed to go into residential care. She said she didn't feel like she was improving or feeling better and she thought this would be the best thing to do. I remember storming out of that room with my chest so tight I thought it’d explode. I left them to finish their session and went outside to call my mom. I cried my heart out to her on the phone, taking advantage of the few minutes I still had to myself. When we were on the way home, my girl told me that she thought this was God’s will for her. I lost it. I pounded on the steering wheel to make my point clear. I told her that God did not want this for her life! That these feelings that she was having were not of Him and that He would make her better if we just believed. God was at work. No doubt. He was working on our hearts. Preparing us for January 25th. He was paving the way and closing and opening the doors He saw fit. And so our prayers changed once again. Now I pleaded with Him to not make this be the way to her healing. To not let us be separated from our little girl. Christmas eve came around and we were at our last session of the year with her doctor. She told me that she didn't feel our child was safe and that after the holidays, we needed to reevaluate the options. Christmas and new year’s came and went, almost in a blur and 2013 greeted us with the toughest decision we will probably ever have to make as parents. Our prayer now was that God would lead us in the direction that He wanted us to go with her. We met with her treatment team and all agreed that our only option at that point was to place her in a residential facility that would meet her specific needs.  It was clear to us then that God was taking us to this place that we didn't want to go but that was necessary for our daughter’s healing. We prayed that He would take us to the right one. We did research and continued to pray. God opened the right doors and we were led to the place where our Smiles is in now. Going into this stage of the game we knew that our insurance company would cover some of this treatment but that at some point they would start to fight us on whether it was really necessary.  At $525 a day we knew that fight would happen sooner rather than later. We signed papers at her admission telling the facility that we would take financial responsibility once the insurance coverage ran out. We just wanted her to get the proper treatment. As the weeks started rolling by our focus remained on her and her struggles to find the right treatment plan. Four weeks later, we have just started to see some progress but there is still a lot of work to be done. Last night I got a call from her therapist informing me that the insurance company had begun the denial of coverage process. She told me not to get too upset just yet and went on to explain the appeals process. Today the doctor will do his part in getting that process started. It’s called a peer to peer review. This is where he gets the opportunity to try to convince them that she is not well and that she is not ready to go home. Our prayers must change again. I know we should pray for specific needs but, as I told God this morning on my way to work, I don’t know what to pray for. I don’t know what I should ask for. So I ask that He moves, that He provides, that He draws us nearer to Him and the He would do His will in the life our girl. This is too big for us. It is. But, it is not too big for our God. I know that He loves her more than we could ever love her, and if we are willing to do whatever it takes to get her the help that she needs, how much more will He do for her.

The next few days are going to be critical. Please pray that God will move. That He provides. Pray that He gives us strength to fight this so that we can get our child the help that she needs. That He makes His will clear to us. And that if and when we doubt and falter, that He will help us with our unbelief.

Thank you for your continued prayers and support.

Day 32: Hope

From Mom,

Those of us who have Christ, have hope. We have hope because we know that His promises are real and that He is working even in the midst of a storm. Does that mean that we don’t have days when we feel totally hopeless? No, it doesn't!  I will tell you that last Thursday, I was feeling completely hopeless. Things with our sweet girl did not seem like they were progressing and honestly, I didn't see an end in sight. Then we got to the visit on Saturday and as soon as we saw her, we knew that something was different. Her smile was real. I've learned to tell which are and which aren't.  Dad and I got to spend the visit with her all alone because her sister was at a church event. It was great! We talked about nothing and everything and just enjoyed seeing her look so focused and positive. Going back on Sunday, we were a little skeptical. We've learned to not trust these moods of hers or not rejoice too soon because they often don't last. But God is good and Sunday’s visit was even better than the day before. We know that this doesn't mean that we’re in the clear. I’m sure there will be many bad days ahead. They are in the middle of regulating medications and her system has to get used to all of that , but this weekend gave us hope. Hope that we might have our girl back soon. Hope that she can and will have some normalcy even if it means she will have to work harder at that than the next gal. And hope that her smile will be real, soon.

Today is a month that we dropped her off at that facility in Orlando. Some days have been harder than others but none have been easy without her. There is still a lot of work to be done. We are starting to see a light at the end of the tunnel though, and for that we are thankful today. 

Don't always believe what you see!

Encouragement for us all...

Someone once told me that when we complain about our circumstances, what we are really saying is that God doesn't know what He is doing... 

I have earned a reputation for knowing useless and arbitrary facts.  Facts that can sometimes be categorized as useless information.  Well here is one... For example, did you know that the images your eyes see are actually transmitted upside down to the brain? The brain processes those upside down images and turns them right side up for us.  Here's another one...

Did you know that each of your eyes has a blind spot? There is a spot on the retina of each of our eyes that literally can’t see anything at all. This blind spot is where the optic nerve is and there are no rods or cones there. You can sometimes see when you only have one eye open.  Now, you normally don’t notice that there is a blind spot anywhere in your field of vision. That’s because your brain is filling in the gaps, so to speak.  Your brain doesn’t have to do much gap filling actually, because you normally look at things with both eyes, and one eye can always see the spot that the other eye can’t. But your brain does mesh the two images from each eye into one seemingly seamless image when you are using both eyes.

Our ears don't hear all the possible sounds there are.  Its common knowledge that most dog hear much better than we can.  More useless facts...that's because their ears are generally and simply more sensitive, that is they can hear fainter sounds than we can.  Second, and more to the point, dogs can hear frequencies outside the human range of hearing.   Ever wonder why you can’t hear a dog whistle? Well, generally it’s because dogs can’t whistle! Sorry, I couldn’t resist it. Anyway, dogs can hear things that we can’t not just because they are too faint for us, but because we can’t hear those things no matter how loud they might be. As another example, it has been found that elephants routinely communicate over large distances using ultrasound rumbles. Humans can’t hear these vocalizations and for a long time we had no clue that elephants were communicating this way. But finally somebody began to suspect something fishy about elephant behavior and they deployed special instruments to detect this ultrasound – and voila, we suddenly began to understand what we were missing. Whale songs are also inaudible to us, but most everybody has heard of them nowadays, because we have the equipment to detect and then translate them into sounds that we CAN hear.

Our noses aren’t the best in the animal kingdom either. Dogs can smell fainter smells than we can. And they can smell things we can’t no matter how odiferous they might be. Beagles are famous for sniffing out rabbits. Have YOU ever tried following a rabbit from scent alone? And of course dogs are used to sniff out drugs all the time. And more recently, they are even being employed to detect certain diseases like cancer. ‘Nuff said?

The moral of the story is: Don't be afraid or angry about what you see or hear, and worse yet, what you think you know.  There is so much God is doing in the midst of this mess, things we can't understand, things we cannot see and questions that are not answered.   What we "see" is that things are upside down, that there are no answers in sight and try as we do, we can't hear from God why.  BUT that does not mean, He isn't working, you just can't see it yet.  He is speaking, we just haven't translated it yet.  You haven't heard Him yet  because His voice is faint.  If you practice being still, His voice will be heard in your SOUL where He lives and a peace will surround you, a peace like the dog hears the whistle, reserved for His children and those who choose to trust in what they cannot see and cannot hear.  

As angry as we may become at the circumstances, as desperate and hopeless as we may feel, never lose sight that what we see is not all there is...HE IS BIGGER AND LOUDER!

Greater is He who is in You than he who is in the world!

Day 26: New Stage: Anger with a Dash of Persecptive

From Mom,

The last few days have not been easy ones for our daughter. She is frustrated and desperate and terribly sad. She wants to come home. It’s hard for her to focus on anything else. Her mind is all over the place right now and the only thing she knows for sure is that she’d rather be any place but there and that we, her parents, are not doing anything about it. I know we can’t take anything she says personally. I know she’s not in a good place and that she is just lashing out. I just wish that we could bring some comfort and solace in a time when she feels so sad and alone.

My mom always says that when we feel like complaining about our situation, we should look around because we will always find people that are worse off than we are. She hasn’t said that to me now though. But, some days when I am not sulking, I do try my best to stay positive and concentrate on the good. I have a friend who just lost a loved one in a senseless and tragic way, another who is going through financial difficulties that can and will impact the lives of her children, family members that are going through some serious health issues and the list goes on and on. I find myself trying to focus on what’s good, like I mentioned before, knowing that it can always be worse. But this is my child we’re talking about and it just isn’t fair. I think I’ve reached that stage of anger and frustration they warned me about a couple of weeks ago. I’m not angry at God though. I know this is not what He wants for me or my family. He didn’t set out to hurt us or destroy us. But we know that is what satan wants. And I’m angry. Angry at the situation, at life, at the doctors….. just angry. I want to be able to tell my daughter that everything is going to be ok and believe it. I want to make it all go away for her but I can’t. I think she’s angry too. She wants to will herself to get better so that she can get back to her life as soon as possible. She’s 13 and right now, like every other eighth grade girl, she wants to plan on what she’s going to wear to her middle school prom. It’s hard to look ahead and know that there are events like that coming up that mean so much to her that she may not be able to attend or be a part of. It hurts me that her eighth grade shirt with all of the kids’ signatures on the back is missing hers. These are all little things in the grand scheme of things I know, but they are little things she is missing out on, and they are big to her! So, yes I am angry, very angry right now but in the midst of all that is so wrong, there are people who manage to love us through it all. Who try desperately to find ways to make things easier for us if only to lighten our load. We appreciate that more than we can possibly express. It gives us hope. It carries us.

A Lesson From the Snail

I know today will be difficult, just like yesterday, and probably like tomorrow.  But with each passing day, you are one step closer to bringing Smiles home, healthy and whole.  It may not seem like you've made any progress, like your stopped at this "unrest" stop for what feels like forever but the wheels of the Lord are always in motion.  His tireless work may not always be visible but it is palpable when you have Faith.  His assurance is found in His Word, in the comforting hold of your spouse, the love of your children, and the support of your friends and family who love you and will quietly walk along side you until we reach success.

The road to success is not straight

There are curves called Failures, 

loops that have caused us confusions,

and red lights set by the Enemy.

You are not however, traveling alone.

You have friends called speed bumps that help you from going to fast

Family who help refill the tank for the journey ahead

and Road Side Assistance from Prayer warriors 

who pray for safe passage.

You're equipped with a spare called Determination,

an engine called Perseverance,

insurance called Faith, and

a driver called Jesus.

Believe you will make it to a place called Success!!

In the mean time, do not fear and know you are loved!

Day 21: Valentines Day

From Mom,

Today is supposed to be about love, hearts, chocolates and everything that is pretty and romantic. Somehow even wishing my husband a “Happy Valentine’s Day” seems wrong right now. He deserves it, don’t get me wrong, but how are we supposed to feel happy today when our little girl is so far away from us? How do I not focus on last night’s phone call when I spent almost the whole ten minutes trying to get her to stop crying and focus on getting better rather than coming home? Sometimes I feel like I say those things for my sake more than hers. I’m the adult, her mom. I’m supposed to keep it together in front of her. And so I say all the things I know I have to say to her even if I don’t always buy them myself. The truth is, today hurts and as much as I try to focus on the end result and how much healthier my girl will be when she comes home and how she is in the right place, getting the treatment that she needs, it doesn't make today feel any better. Today is not what it should be. It’s not what it’s supposed to be.

When I wrote out my husband's Valentine’s day card last night, I had to think hard about the stuff that was good in our lives rather than what is so wrong. God gave me a wonderful husband and awesome father to my girls. The best daughters any mom could want, great family and wonderful friends. Though it’s not Thanksgiving, I want to make sure not to take any of God’s blessings for granted and be thankful. There is a lot that is wrong and it is SO wrong that at times it can cloud our vision and not let us see what IS good.

Happy Valentine’s Day my sweet girl. We love you so very very much!